Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: Sharmin on April 23, 2008, 10:05:13 PM
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Andy,
Thank god for you!
I talked to my son's doctor 2 weeks ago - and we did the transfusion at a very slow rate. He was also hit with a big dose of prednisone.
Last time his hg after 2 weeks was 80.
Today, his hg after two weeks is 122.
His doctor asked us to come back in another 2 weeks.
He is looking great - his lips are as red as cherries and he is very upbeat and he has been playing with a ball
for hours like a puppy.
Thank you for your advise, we will continue to transfuse him at a very slow rate.
What a scare he gave us 2 weeks ago!
I hope your daughter is doing well Andy. I am happy about her nursing internship - she must be so happy.
Sharmin
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Sharmin,
This is wonderful news and I hope the high dose of prednisone can eliminate the problem. It has been stubborn but these antibody issues can correct with aggressive prednisone use. Let's hope the slower rate will lessen the reaction. It does seem like it would be less shock to the system this way.
My daughter is still feeling tired but with her workload anyone would be. Her physical is in May after school ends. She is now confirmed for the nursing internship for 8 weeks this summer. She will be working in the ICU at the local community hospital in Buffalo, and getting paid rather well. She's excited.
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Congratulations Sharmin, i am so happy for the good news :congrats
Andy, i wish your daughter all the luck in her summer internship :goodluck and please keep us updated about her tests
manal
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Good to hear that Sharmin :happyyes :stars
Andy,
Wishing your daughter, the best of luck for her career! :goodluck
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Hi everyone,
my son did great for about 3 weeks after his last transfusion. This week his lips seem a little more pale and he is suddenly lethargic. He has never fallen asleep during the day - but today he fell asleep as soon as he got home from school - and has been feeling unwell all day and he has an upset stomach. Just when I think things are getting better :dunno.
Andy, he was on a very high dose of prednisone this time - usually such a dose could get him through 5 weeks. This time - if his hg is low - it has only gotten through 3 weeks - could this mean that the prednisone is not working as well to control the antibody? I am quite anxious, if the prednisone can't control the antibody then what will happen :dunno :dunno :dunno
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Sharmin,
I wish there was something definite I could tell you, but with antibody reactions, it is often the case that there is no easy answer. Different tactics are tried and maybe a combination of tactics may work. Taking less blood at a slower rate is one. Prednisone is another. I have read that sometimes EPO is used along with prednisone but with mixed results. Although this is troubling, it can't be considered severe hemolysis, as his transfusion frequency is still measured in weeks. In cases of severe hemolysis, the initial dose of prednisone can be 100-200 mg.
http://www.merck.com/mmpe/sec11/ch131/ch131b.html
Corticosteroids (eg, prednisone Some Trade Names
DELTASONE
Click for Drug Monograph
1 mg/kg po bid) are the treatment of choice in warm antibody idiopathic AIHA. In very severe hemolysis, an initial loading dose of 100 to 200 mg is recommended. Most patients have an excellent response, which in about 1⁄3 is sustained after 12 to 20 wk of therapy. When stable RBC values are achieved, corticosteroids are tapered slowly.
I have mentioned this before and wonder if it is practical to find donors who are better phenotype matches. Donors with a similar ethnic background may help minimize the compatibility problem.
http://www.ncbi.nlm.nih.gov/pubmed/11071629
The effect of red blood cell (RBC) phenotypic differences between donors (mostly white) and Asian recipients on the frequency of alloimmunization was determined. Additional transfusion and patient immune factors were examined. 14 (22%) of 64 patients (75% Asian) became alloimmunized. A mismatched RBC phenotype between the white population, comprising the majority of the donor pool, and that of the Asian recipients, was found for K, c, S, and Fyb antigens, which accounts for 38% of the alloantibodies among Asian patients...Transfusion of phenotypically matched blood for the Rh and Kell (leukodepleted in 92%) systems compared to blood phenotypically matched for the standard ABO-D system (leukodepleted in 60%) proved to be effective in preventing alloimmunization (2.8% vs 33%; P =.0005). Alloimmunization and autoimmunization are common, serious complications in Asian thalassemia patients, who are affected by donor-recipient RBC antigen mismatch and immunological factors.
http://www.blackwell-synergy.com/doi/abs/10.1046/j.0041-1132.2003.00589.x
RBC autoimmunization and the development of autoimmune hemolytic anemia should be recognized as a complication of allogeneic blood transfusion. The need for additional blood transfusion was successfully avoided in one patient by treatment with recombinant human EPO and corticosteroid therapy. Once RBC autoimmunization is identified, subsequent management should incorporate a strategy that minimizes subsequent exposure to allogeneic blood.
http://bloodjournal.hematologylibrary.org/cgi/content/full/97/12/3999
Previous data on a presumed homogenous population in Greece and Italy also showed an overall low rate (5% to 10%) of alloimmunization.2-3 The difference between our experience of lower rate of alloimmunization (7.4%) and Singer et al's higher rate (22%) can be explained by our access to phenotypically matched donors in Hong Kong. We agree with Singer et al's recommendation that the recruitment of Asian blood donors in North America, just like the recruitment of black donors for sickle cell disease patients, can increase the availability of compatible blood for thalassemia patients, who have a lifelong need for transfusions.
If there is a large enough Asian community in your area, it may be practical to arrange for blood from a similar population. It may require some work to find a group of matching donors or it may be possible through the blood bank. It is something you should talk to the doctor about. I would also suggest that if it is at all possible, you consult with Dr Vichinsky about this. I don't know if a phone consultation would be possible, but it would seem sufficient as an examination of your son shouldn't be necessary. Dr Vichinsky has much experience with this and may be able to advise a strategy to deal with it before it does become worse.
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Thank you Andy. We plan to see Dr. Vichinsky in the fall - I wonder if perhaps we should go sooner.
After his nap - he bounced out of bed and seems well. His color also looked a little better.
The highest dose of prednisone he has been on is 40mg - for 7 days. It was then tapered to 20 (4 days), 10 (4 days) and now we are on 10mg every second day as usual. His rate of transfusion was decreased from 90cc/hr to 80cc/hr - but he was given both units. Next time perhaps we can slow the rate further and take only half the amount - and go in two weeks later for the other half. I think this may be best in the long run.
My son's blood type is O - and he has 7 allo antibodies so it is really difficult to find a donor for him. The hospital takes 4 large vials of blood to cross match him.
We will make an appointment to see Dr. Vichinsky as soon as possible - thanks again Andy.
We'll do his blood test Thursday morning - if his hg is still in the 90s (it will be almost 4 weeks) then things are good. I'll keep you posted.
Thank you for all of the information - I will share it with our doctor.
S
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Andy,
My son's hg today is 80 - 3 weeks post transfusion. I am really confused because 1 week ago it was 122. He looked great until last Friday - very red - but he woke up looking pale Saturday morning. I know that most of the hemoloysis happened over night. I am not sure what would have caused the sudden drop. I was hoping that he would be at least 90 because of the high dose of prednisone he was on. I am hoping that we can begin transfusing him at a slow rate every two weeks, because I notice that it is between the 2nd and 3rd week that he drops drastically. I wonder if transfusing him 15cc/kilo rather than the 20cc/kilo he is getting now - every two weeks may be best. I know that the transfusion requirement is not out of control right now, but the problem is getting worse rather than better.
I am very afraid right now, and we are looking into seeing dr. vichinsky next month.
Thanks again,
Sharmin
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Sharmin, i am praying for you and for your son. I am sure that things will be much better, please update us :hugfriend
manal
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Manal,
Thank you so much for your support. The hospital called saying that they will need more time to find matching blood for him - I hope that they find it soon, before the antibody reduces his hg further. Our pediatrician says that Andy's suggestion makes a lot of sense and wants to follow the plan that we suggested to him. It has been a stressful day waiting around for the blood, but my son is running around playing so that makes me feel better. His eyes are bright and he looks very happy. We have to be thankful for every positive moment we get:) Thank you for your prayers Manal, I pray that all of our children are healthy soon. :hugfriend
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Give lots of hugs and kisses to Maani from his aunt Zaini :bighug :bighug :bighug
I hope everything will be alright with this handsome young man :)
ZAINI.
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Thank you Zaini :hugfriend
I love you Manal and Zaini - what would I do without you??
We are still waiting for the blood bank to find blood. I'm sure they will find it either later today or tomorrow morning.
I'll let you know when they do:)
:bighug :bighug
Sharmin
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Sharmin,
The slower transfusion rate with less blood should make some difference.
http://www.clinlabnavigator.com/transfusion/WarmAutoimmuneHemolyticAnemia.html
A critical aspect of transfusing patients with AIHA is to avoid over- transfusion. The kinetics of red cell destruction always describe an exponential decay curve, indicating that the number of cells removed during a unit of time is a percentage of the number of cells present at the start of this time interval. Raising the hemoglobin level abruptly is likely to increase the amount of hemolysis that is occurring and may precipitate DIC. Indeed, the most common cause of post transfusion hemoglobinemia and hemoglobinuria in AIHA may not be alloantibody induced hemolysis but rather the quantitative effect of increasing the red cell mass subjected to ongoing autoantibody hemolysis. Accordingly, transfusion of comparatively small volumes of blood is the optimal means of minimizing the danger of transfusion-induced intravascular hemolysis. The patient's hemoglobin level should be maintained just above a tolerable level until more specific therapy becomes effective.[/size]
I've been reading about blood matching which has been done using phenotyping. In recent years, it has been shown that genotype matching of blood can give a more accurate match.
http://www3.interscience.wiley.com/journal/98518982/abstract?CRETRY=1&SRETRY=0
Genotyping was very important in determining the true blood groups of many polytransfused patients with -thalassemia, and it assisted in the identification of suspected alloantibodies and the selection of antigen-negative RBCs for transfusion.
By using this along with phenotyping, a better match is found. After many transfusions, it becomes difficult to determine the true blood type because so many foreign antibodies have been introduced via transfusions. Genotyping matches for the true blood type.
http://cat.inist.fr/?aModele=afficheN&cpsidt=1466407
After multiple transfusions, the serologic typing of autologous blood group phenotypes is difficult, because of mixed RBC populations. The genotyping of ABO, Rh, Kell, Kidd, and Duffy systems could be used to determine autologous blood group antigen status...Genotyping from peripheral blood produced results identical to the autologous blood group phenotypes, regardless of the amount of blood transfused or of the length of the sampling period after transfusion. CONCLUSION: A fast and reliable PCR.sequence-specific primer DNA genotyping assay for simultaneous determination of autologous ABO, Rh, Kell, Kidd, and Duffy blood groups can be performed on peripheral blood samples, even though the patients have recently received multiple transfusions.
http://cat.inist.fr/?aModele=afficheN&cpsidt=18300371
The development of red blood cell (RBC) isoimmunization with alloantibodies and autoantibodies complicate transfusion therapy in multiply transfused thalassemia patients...In conclusion, the transfusion of matched blood is essential for chronically multiply transfused patients in order to avoid alloimmunization. Considering the high frequency of anti E at our hospital, it is advisable to genotype patients and match the red cells for E antigens in multiply transfused thalassemia patients.
I do not know where the current state of genotyping is or if it is even being done on a routine basis. There is a movement in Europe to replace the old method of phenotype with DNA genotype. There is a group called Bloodgen that is working to make genotyping the standard for blood matching.
http://science.uwe.ac.uk/projectshowcase/neil_avent.asp
Bloodgen is an international consortium led by Professor Neil Avent and colleagues in FAS. The consortium aims to use genotyping to improve patient safety and blood transfusion compatibility.
In most developed countries safe blood transfusion is taken for granted. But, not all blood groups are compatible, and blood grouping is complex, with two cross-matching tests required prior to transfusion.
What's more, these tests are based on technology that has not changed since the early days of blood transfusions. Bloodgen aims to change all that with the development of a 'Bloodchip' - a CE-marked commercial product that will be sold to Blood Services worldwide.
There are 29 different blood group systems but currently only ABO and Rh (Rhesus) are routinely tested for. Professor Avent, Director of UWE's Centre for Research in Biomedicine and leader of the project said:
"Inevitably there is going to be some incompatability with blood transfusions, especially in those that receive multiple transfusions, because if it is incompatible the patients' immune system will create an antibody. Blood grouping at the moment uses antibodies that interact with proteins on the surface of cells.Our research looks at blood group specific genes which vary from one individual to another. This is certainly a safer means of testing blood because of its comprehensiveness. The Bloodchip will embrace all blood groups that are clinically significant and we'll be able to have those tested on a routine basis."
"The ultimate goal is that a new technology will come in and replace techniques that have been around for 100 years or so. Genotyping is incredibly accurate and could be used for a wide range of routine testing of patients in the near future."
The Bloodgen consortium, which is supported by a large EC Framework V grant, pulls together expertise from around the globe. The partners are: Biotest AG Dreieich, Germany; Bloodbank, Rotterdam; Blood Group Reference Centre, Barcelona; Institute of Haematology and Blood Transfusion, Prague; the North Bristol NHS Trust, Southmead, Bristol; Progenika SA, Spain; Sanquin Research Foundation, Amsterdam; University Hospital, Lund; University of Ulm, and the University of the West of England, Bristol (lead partner).
Genotyping will eventually replace phenotype matching of blood. One article I read from 1999 talked about the white population having been genotyped but others, such as Asian still needed to be done. I don't know how much progress has been made in the past nine years but I think this is an important subject to bring up when you speak with Dr Vichinsky.
I read until I couldn't keep my eyes open the past two nights, trying to find information for you and Rozitka about antibody reactions. It is somewhat frustrating because it is a very difficult problem that affects a percentage of those receiving blood transfusions and there are no easy answers. I hope each little bit of knowledge can come together to help in some way.
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Andy,
I can't thank you enough! This is so much useful information - and I can see the pattern - when our doctor began transfusing him more aggressively - the antibody only became more active. I will take all of this information to him so that we can find the optimal method of treating him. Thank you from the bottom of my heart :hugfriend
I'll keep you posted,
Sharmin
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Sharmin,
I have worked so hard at trying to find answers and it makes it all worth it to know that anything I found can be of even the smallest help. I am also really happy that your doctor is willing to look at these things and use what he thinks may help. I never am trying to show doctors up and really hope that my contributions can be seen as what they are, and that is sincere attempts to give some information that can help. I realize that with the amount of work many doctors are confronted with, that they may not have the time available to do the hunting that I can do. (And believe me, no one wants their doctor to be as bleary eyed as me after a couple nights reading medical study summaries). I hope any doctor can find some answers in the information I compile. Your doctor has been so open to the information I dig up. I hope all doctors can understand that we're all trying to do the same thing and that is help patients. We hear a lot of negative comments directed towards doctors and much of this is the result of doctors just not having prior experience with thalassemia. I don't think any doctor should be criticized for this, but the criticism may begin when a doctor is confronted with thal and makes no attempt to further his/her understanding. I feel this is a minority of doctors who are like this and I think if patients encourage their doctors to find correct information, that we will see far fewer complaints, as most doctors do take their work seriously and will try to learn what they can if they know the information they possess is not complete. Sharmin, your doctor is doing a great job and has shown so much willingness to look at information that may help make life better for your son. I hope a solution to this autoantibody problem is forthcoming.
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Thank you again Andy,
Our doctor says that the information you provided makes a lot of sense. I will print the articles off for him - he usually takes the information and shares it with a few other doctors - they all agree that this course of treatment makes a lot of sense.
And the good news is that they have got some blood for us!! So we are off to the hospital to get his slow & small transfusion!
Thank you everyone - we love you all!!!!!!!!!!!!!!!!!!!! :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend
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Andy,
We shared all of the information with our doctor today. He has taken our print offs and he is studying it all - he wants to fully understand it before deciding our future course of treatment. He is the best doctor ever, he spent a good 1 1/2 hours with us today - at the end of his work day to make sure he understood our views - so that he could research them further. In the meantime - he decreased the transfusion from 20cc/kg to 15cc/kg - and the rate as I have mentioned from 90cc/hr to 80cc/hr. We will return in 2 weeks. Also, with IP6 and a slight increase in desferal the ferritin has decreased from 2300 to 1700. The information you have provided will make a great difference - it is already starting to:) Thank you for your hard is making things much better.
Sharmin
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Andy,
My son was transfused on May 2, his pre-transfusion hg was 80. He was given 15cc/kg rather than his usual 20cc/kg - at the slower rate I mentioned.
Today, 10 days later his hg is 78. I am a little disappointed because I had hoped that the tx would last 2 weeks, but I suppose we did start pretty low. Maybe we can try transfusing 1 week apart for a while until his pre-tx hg is high enough to last 2 weeks with the lower volume. I'm glad that we are getting expert help soon, because things are definitely getting worse, considering that he is on the prednisone and his hg is still falling quite rapidly :dunno. In the beginning prednisone was able to make him last 5 weeks, and now we are barely getting through a week. We desperately need a change in his treatment. I will let you know what his doctor decides to do.
Thanks again Andy,
Sharmin
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Hi Sharmin
Praying your soldier gets through this as soon as possible. Wouldn`t it be beneficial to know his post trans hb just to know the rate at which he is dropping. Hassan always gets 15cc/kg and there have been times when his post trans hb had shown an increase of a little less than 2gm/dl and sometimes even showed an increase of over 5gm/dl depending on the quality of blood. What your son is going through is something very different but what I want to point is perhaps his hb did not increase much in the first place. Wishing your son loads of health
Maha
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I hope everything will turn out fine sharmin,this problem is scary,my prayers are with you and maani. :hugfriend
ZAINI.
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Thank you for your prayers Maha and Zaini :hugfriend
Maha, we have at times done post tx hg - but the doctor has not done it lately. Thank you for the reminder, I will mention it to him today.
Andy, with the slow rate, lower volume tx - should we notice the lower antibody activity (rapid hemolysis) with each individual tx - or are we looking for a long term benefit - after a few transfusions a reduction in the rate of hemolysis? My guess was that we are looking for a change with individual tx - because that particular tx is causing less shock to the body - hence triggering less antibody activity.
Thanks again Andy, I will update you all after our tx today - sending my best to all of you :hugfriend :hugfriend
Sharmin
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Sharmin,
Yes, the hope is that a slower transfusion rate will cause less hemolysis. And with a lower amount of blood being transfused, the HB will drop more quickly just because the same volume of blood isn't taken. Weekly transfusions are often the answer until the antibody problem is under control. Prednisone shock may be the answer, but I would wait and talk to Dr Vichinsky before taking that action.
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Thanks Andy,
Today they give him 1 bag - less than 15cc/kg and we will go in for a second bag on Friday. We then plan on going in weekly until his hg is high enough with the one bag to tx every two weeks. We are continuing with the 10mg alternate days of prednisone until we speak with Dr. Vichinsky.
Our hope is to get on a better treatment plan after our visit in Oakland, also to bring back valuable information for other patients. I hope what we learn will also help Rositka and the family in Greece. There are ways to deal with this issue we just have to learn how it can be managed.
Thank you everyone for your wishes and thank you Andy for the wealth of information and insight.
Sharmin
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HI Sharmin.
Thinking of you at this hard time. chin up, hopefully your child will get better soon
To you :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers
Take care Kathy
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Thank you Kathy, your wishes warm my heart at this time:)
:love :love :love
I hope that you also are well:)
Sharmin
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Sharmin,
Can you also ask Dr Vichinsky if L-carnitine would be of any help in prolonging the life of red blood cells when there is an antibody reaction responsible for their early demise?
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I'll start making a list - these are all great questions.
- Vit C containing foods
- L-Carnitine.
I have until the end of June before I leave for our trip if you think of more questions.
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What about resveratrol? Is he taking it? are you giving him wheat grass?
I'll pray everything will be back to normal,well,as normal as it can be for our kids ,so many hugs and kisses for maani :hugfriend :hugfriend :hugfriend
ZAINI.
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Thank you Zaini,
your wishes make a big difference. The doctors are confident that this will get better, they are trying to determine the best way to do so. Our doctor reassured me that things are not out of control and my son is not in any danger at this time - which makes me feel better. We will do small weekly transfusions until things are better.
Andy, during our visit they will be doing the phenotype testing on my son as well. I started him on wheat grass today - should I begin the resveratrol as well?
Thanks everyone, love you all :grouphug
Sharmin
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Hi Sharmin,
I'm glad that it's going better this way. This shows that we have to go beyond the books. Though I can feel the pain of your son going through weekly transfusions is in itself a great deal too. I know I felt like pulped out fruit when I knew that I will be getting bi monthly transfusions instead of monthly. I felt like my life got tied more tightly to the hospital from that day.
I hope your son's routine gets back to normal soon. Praying for his health :pray
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Thank you Sajid, your support (and everyone else's) brings tears to my eyes. Thank you for your prayers. I will keep you posted.
The little munchkin is actually glad that he is going in more often these days - they have Nintendo Wii for him to play - so he gets to miss school and play Wii instead. He thinks it's party time every week, in fact in his 'humble' opinion he told me that this is indeed the best plan. :happydance
I'm sure he would feel differently if he were older.
Thank you again everyone, I pray for your good health and well being too Sajid - and all of my wonderful friends. :grouphug
Sharmin
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WOW a Wii !!
Now I wanna come and join the fun with him every week :wah :biggrin
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Sharmin, i am so happy that he is feeling this way. Actually i know that this makes you feel some how releaved and comfortable, i know what our children think and feel and how they take things makes alll the difference to us. Hope he will always enjoys his life .
Sharmin, are these antibodies going to last or they should be limited and thus stopping the prednisone. What is the plan to avoid this happening again in his future??
manal
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Hi Manal,
These type of antibodies behave differently in everyone. In some people they are transient, as the doctor had hoped with us and in some people they become chronic. We are hoping that with the right treatment perhaps we can suppress them.
There are a few ways to take care of the problem, one is to manage it as we are doing for the time being - a certain dose of pred, slow, small volume transfusions more frequently. Another method is one in which the patient is exposed to very high doses of prednisone periodically, after a few cycles of this 1/3 of the patients will be completely free of the antibody problem. This is great for the 1/3 of patients it works on - but for the other 2/3 are unnecessarily exposed to massive quantities of steroid with no benefit. There are other methods, such as introducing an antibody against the particular antibody which is causing the problem, to the patients body to scavenge and eliminate the problem causing antibody - Andy do you know anything about this? Can it be harmful to the immune system in general?
The hope is that with normal changes as the child grows that perhaps the antibody just - goes away - or becomes less of a problem - and in most cases that is what happens during puberty. In the odd case, the problem could become worse but we are hoping that things won't go that way. My son will be 10 in a few months, so we are hoping for some positive changes soon. Also, we are hoping for something more positive from our Oakland visit. Perhaps if my son were to be on Hemaquest in the near future (if it is as effective as we hope, and it is an avenue available to us) maybe the antibody will become less active - as he won't be exposed to massive quantities of foreign blood.
I suppose that there is hope, for now the only problem has been more frequent transfusions - but his ferritin levels have not been too bad - his desferal was just recently increased so we are hoping for it to improve further. With some good advice, and a lot of prayers I am hopeful that everything will be okay.
Thanks for your constant concern and support Manal,
Sajid - you are welcome to come play Wii anytime:)
Sharmin
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Andy,
Our transfusion was on Tuesday - only 1 bag (less than 15cc/kg) - the hg before tx was 78 - this morning his hg is 98 - and we are txing again tomorrow. I am hoping that tomorrows tx will get us high enough to last a week. Perhaps another possibility is to tx two consecutive days - 1 bag each day - and hope to go back in 2 weeks. I guess it is a matter of seeing what works.
Sharmin
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Hi Sharmin
There are other methods, such as introducing an antibody against the particular antibody which is causing the problem, to the patients body to scavenge and eliminate the problem causing antibody
My mother has done the same, but she is a rhumatoid patient and you know this disease is all about antibodies attacking the joints. Any way she did this immune modulation drug where the doctor took her plasma and prepared a medicne that balances wth the antibodies in her system. Anyway, she feels a lot better now, the most important thing is that she stopped the methotrexate ( chemo pills that is used to hide all her painful symtoms) that she used to take since 2003. Until now she has no symptoms and she is off from the medicne.
I know that this maybe a different situation, but i think the concept of antibodies is the same
manal
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Thank you for letting me know about this Manal, I am also glad that your mother is feeling better :)
How long has it been since she went through this procedure? Has it affected her immune system in general?
I am glad to hear that she is off of the strong drugs and I hope she remains symptom free. I will give this some more consideration - if it works it will resolve all of our problems - and we'll be back to having only thalassemia (isn't that funny to say - I am hoping for the thalassemia the way it was monthly transfusions and nightly chelation, predicability aaahhhhh those were the days). All of this worrying can really take a toll, wondering what is going to happen each week.
Thanks again!!
Sharmin
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You are welcome Sharmin. :hugfriend
Actually, they prepared from her plasma, five small bottles with different concentration. She used to take from bottle one 0.2 ml of it by injection under the skin then the second and third day o.4ml. Then on the fourth day We began with bottle two in the same way. The same happenes with all the bottles till we reached bottle five where she finished all the solution in it. She used to take the injections a day after the other. So it almost took her like a month and half to finish the course.
What she said that she was feeling better each day because her symptoms were disappearing a bit by bit, she felt well . She is thinking of repeating the course once more as she is psychologically feels that this helped her a lot.
The doctor said that this is possible but she should have a gap between the two courses. I hope that she really continues free of her painful symptoms
manal
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Manal,
I hope that she remains symptom free, rheumatoid arthritis can be very painful and tough on patients. If she has felt well so far I am sure the treatment has worked. Moms are so special, we rely on them so much - especially when our children are sick:) God bless them all:)
I will try to get more info about auto-antibodies while I am in Oakland - especially the method your mom has used - I hope the information will be helpful to everyone.
Sharmin
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Good Luck Sharmin, always praying for you
:goodluck :goodluck
manal
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Hi everyone,
my son's hg was 98 last Thursday - he received on bag - and this morning his hg is 110. We will go in again for another unit tomorrow. It is nice to keep him up this high because he is energetic and happy. We'll keep giving him this small volume weekly for a while and see how he does - this is sooo much better than the ups and downs we were going through before. I can't imagine that would be very good for the heart either. This is more stable and the changes are small and slow - thanks again for all of your research Andy - our doctor has been going through it in the last week or so, we'll discuss it with him tomorrow.
Thanks again everyone,
Sharmin
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Andy,
I am noticing lately that the blood bank usually takes some time finding matched blood for my son - it has happened a few times that it took them a day or so to find blood. He will be transfused tomorrow, but we received a call this evening that we should go in later in the day because the blood bank does not have blood for him yet.
Right now he is 110, and if the transfusion is delayed by a few hours or even a day it is okay. My concern is, what would happen if he were in an accident and lost blood - now that he has 7 allo-antibodies - what if they were not able to find matched blood quickly?
Can you help me with this?
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Hi everyone,
My son's hg dropped quite rapidly again to 78 - his doctor will be increasing his prednisone to 50mg a day for the next two weeks. We'll need all of your prayers and hope things go well - and this awful antibody stops chewing up all of his blood. I am so glad that our appt in Oakland is right around the corner.
Sharmin
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Dear Sharmin
50mg per day is a high dose. Hope this will not go on for long.
Thank you.
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Thanks Omega,
Yes, it is a high dose, for now the dose will be required for 2 weeks and then he will be weaned off.
I am so afraid of where this is all leading - high doses of prednisone - and when he is tapered off the antibodies comes back stronger than ever. I feel so helpless :wah
I have been reading a little bit on plasmapheresis in hemolytic anemia - maybe this can be an option for us rather than ongoing steroid use.
Maybe, if conducted properly plasmapheresis can be helpful to others who suffer from antibodies - but only with extreme caution and consultation with professionals.
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I pray your son gets well soon :pray
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Sharni,
(http://i297.photobucket.com/albums/mm220/ZAINY_2008/praying.gif)
I hope everything goes back to normal,i know and i can feel what you must be feeling,it even scares me that where all this is leading,i am a mom too,i can feel your helplessness,but i believe prayers can change everything and maani will always be in my prayers.
Be strong,love you.
ZAINI.
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Thank you kindly Sajid and Zaini - your prayers mean the world to us.
We will have another transfusion later in the week to help us get to a good level.
The doctor says that things are not as bad as they seem to me because I have a very healthy boy
(thank god) and that this is the first time he is really hitting him with a big dose of steroid - because the tiny dose
has been holding him in the past. He is hoping that this big hit may help bring things under control again. He is also looking into other alternatives and is open to whatever happens in Oakland.
Thank you so much my friends. Communication with all of you gets me through the most difficult of days. I hope you are all well.
Love,
Sharmin
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Our doctor mentioned another method of treatment - to deal with the antibody - I forgot the name - I'll let you all know about it after our next transfusion on Thursday.
Apparently, it is helpful for many autoimmune problems.
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Sharmin, always thinking of you and praying for our little soldier. I hope everything will be just right and it would be just a matter of time. :hugfriend You are doing the best for your son :hugfriend
manal
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Sharmin,
I pray that your son becomes well soon.
Sah.
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Thank you Manal and Sah :hugfriend,
We have another blood test tomorrow and a tx the next day. I hope this one lasts longer.
Thank god none of this is affecting him right now - he's in the shower singing opera :grin
I love you all - I'll let you know how things go over the next few weeks. The doctor is expecting to gain some control over the situation with the new dose of pred.
I wish you all well:) :bighug :bighug :bighug :bighug
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Transfusion again tomorrow guys.
I'll let you all know how it goes.
He seems well - I hope transfusions become less frequent soon.
Take care everyone - god bless,
Shamin
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Best wishes
:goodluck :flowers
Praying for everyone. :pray
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My prayers are with you Sharmin. :pray
Sah
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Thank you all - the day went well. We are hopeful that things will improve soon.
I wish you all good health.
Love,
Sharmin
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Thank you Sah - best wishes to your family :hugfriend
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Andy,
My son will be going in for a blood test tomorrow morning - we pray for the best. He was transfused 1 1/2 weeks ago - his post hg was 124 and he has been on 50mg/day of prednisone since. I can't really tell if he is low right now. I hope his hg held up because he is on such a big dose of steriod, I have been very careful about his diet - but his cheeks have gotten quite big - it's quite sad to look at him because he looks so different - and people are commenting. He seems to be handling it well - luckily things return to normal once the dose is tapered down. The most important thing is that this antibody is under control.
The doctor also mentioned retuximab - do you know anything about this procedure. I understand that the results are not always permanent but they give the body a break from hemolysis and steroids for a while by stopping antibody production.
Thank you everyone for your prayers - I wish you all the best:)
Sharmin
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Wishing you all the best :goodluck
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Hi Sharmin,
Rituximab (brand name Rituxan) is used to eradicate the B lymphocytes. This drug is often used in cancer patients after chemotherapy has been finished. It is also used in lupus and rheumatoid and other autoimmune disorders, as a way to prevent the actions of the B cells. I found an article about its use with leukemia patients who have Autoimmune hemolytic anemia (AIHA). When looking at this article, please ignore what are the effects of leukemia because this has no relevance to your son's case. What does have relevance is that use of this drug did work to counter AIHA.
http://www.nature.com/leu/journal/v16/n10/full/2402676a.html
Our results indicate that a rituximab-based combination regimen (RCD) is highly effective in treating steroid refractory AIHA of CLL (chronic lymphocytic leukemia)....This work was made possible by research grant support to Dr Kanti R Rai from The Chemotherapy Foundation, The Edward Brodsky Fund and The Joel Finkelstein Cancer Foundation.
Basically, what was found was that this did was suppress the AIHA for a median period of 13 months in these patients. This may be an option for your son, but I would suggest that you do not try this until you have also discussed it with Dr Vichinsky. Also, my part time worker has Rituxan treatments 6 months after his chemo for lymphoma and I will ask about side effects etc. He had the treatments on Fridays and never had any problem with working his days the following Wednesdays and Thursdays.
I hope there is some improvement in your son's results this time. 50 mg is a high dose and we don't want to see him on that dose for long.
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Thank you so much Andy,
his hg today was 101. His prednisone dose has been cut back to 25mg for a few days - and then will be reduced further. Our pediatrician suggested that we discuss ritux once we get to Oakland. It would be great to have a break from all of the steroids and frequent transfusions. His ferr right now is 1800 - if his tx requirement is reduced we can bring it back down.
I understand that some patients had a complete recovery after two cycles of rituxmab. With my son also being at the age he is (almost 10) the ritux along with changes in his body over the next few years may take care of this problem. Thank you for the information Andy - I'll bring back as much more information as I can - I know a few of our members can use it.
Andy, would it be helpful if we provide information on the website for newly diagnosed patients to ensure that they have phenotype matching or genotype matching so that they don't end up in our situation? Should other parents have this done for their children even if they have been transfusing for a while? We simply were not aware when we began transfusing our son. Hopefully other parents can avoid this complication.
I'll let you all know how our transfusion goes tomorrow - thanks again everyone - and thank you dear Sajid for your constant support and good wishes:) Your not just an awesome pastry chef - you're just plain awesome:) :hugfriend
Sharmin
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Hi Sharmin,
That's a good level all things considered.
I do think in general we should be pushing for genotype matching of blood along with phenotype matching. It seems practical enough to do and would save patients many problems. Again, I would like to know Vichinsky's take on this. I feel I am getting closer to making a decision about Singapore soon (my worker's uncertain state of health has put me in a holding pattern but hopefully he will have some info later this week) and if I go, I will definitely try to corner Vichinsky again for a few minutes. He is always in such a hurry that he's hard to pin down for long. I am really glad you are seeing him soon.
Singapore is such a long distance from here and quite a costly place, but the outpouring of support I have seen here makes me want to try very hard to get there. I hope I am soon in position to make a decision.
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Sharmin, i am so happy for the good news, wish you all the best :hugfriend
manal
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Thanks Andy - I'm getting pretty eager to talk to the folks in Oakland soon.
I hope I can offer some positive info and hope for everyone here.
I am eager to reduce the dose of pred soon here too - it's time to begin deflating his ballooning cheeks! He looks like he's storing something in them cheeks.
Seriously, when I see the effect on his face - it makes me wonder if he is having other side effects too.
Thank you so much Manal - I hope things continue to get better. I hope that the new treatment works! I hope all of our little children have bright & healthy futures!
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:blush
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My heart goes out for our little soldier,Sharmin,what did doc say about swelling on his face? I'll pray that everything goes back to normal,wish you the best.
ZAINI.
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Hi everyone,
the transfusion went well - the doctor thinks we can do the ritux when we return - he is hopeful that it will be a good thing and we can get off of the prednisone if he administers the new treatment - of course he is consulting with Oakland.
Zaini, thank you so much for your prayers. The swelling is a temporary side effect of the prednisone - he has had it twice before when he is on a high dose of pred and it usually goes down quickly once the dose is reduced. It's just hard looking at his face looking so different. Chances are that over the next few weeks he will return to normal.
Thank you everyone - I'll keep you all posted as we prepare for our trip over the next week.
love,
Sharmin
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The little bug goes in for a blood test tomorrow and tx on Thursday.
Andy, he was transfused last Tuesday and this Monday (6 days later) his hg was 104 - the tx he received on Tuesday was small - 10 cc/kg - as he has been getting for a while now. He is slowly being tapered off of the pred he is now on 25mg of pred alternate days and this dose will be given 7 times before it is reduced to 15mg alternate days and then 10mg alternate days. And if Dr. Vichinsky agrees we will try Rituximab on our return so we can lay off of the pred.
I am wondering if it would be best for him to receive a bigger tx, the normal 20cc/kg on Thursday because we will be gone for 10 days and his pred dose is being reduced.
Since he will be in California for a while in the heat running around, my fear is that his hg may drop too quickly - I hope that giving him more blood and the 25mg alternate day dose will hold him for the 10 days until his next tx. I guess worst case they could tx him in Oakland. The problem is that our appointment in Oakland is not till the end of our trip. What is your opinion Andy? Should we go for a bigger tx? I am a little scared going away for such a long time.
Thanks again Andy,
and thank you everyone else for your prayers:)
Love,
Sharmin
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Hi Sharmin,
It is quite common for thals to take an extra bag of blood before leaving on a holiday. I would say definitely, yes, do load him up so you he can enjoy the vacation.
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Thanks Andy,
His hg this morning was 103. His doctor has decided to give him the two bags. My hope was to split it up between two days so that we aren't giving him a lot at once and getting the antibody all frazzled and excited. I hope that the pred will keep things in check. Transfusion tomorrow and Disneyland the next day :yahoo I don't know who is more excited me or the kids!!
I am excited about our trip and very excited about meeting Dr. Vichinsky. I hope I can bring back info that will help all of our thal patients and friends.
Sharmin
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Hi Sharmin
I am sure that everything will be just fine. Please do enjoy the trip to the fulliest, you really need it :hugfriend Wishing you and the family all the best.
manal
P.s : Sharmin , don't forget the photos
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Thanks Manal my friend,
We look forward to this vacation - and hopefully some relaxation. I will take lots of pictures - you know my obsession with pictures :wink
We'll be thinking of all of you :hugfriend
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Good to hear that :)
Enjoy your trip.
Looking forward to see great snaps :)
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Hi all,
the transfusion went well - we got a little extra.
Thank god - and thanks to all of your prayers - all of the tests that were done for my son - including blood tests, bone age, bone density, ecg, echocardiogram came back completely normal. His vitamin D was slightly low but the doctor will supplement him for that. I am very very thankful for these results. Other than the thal and the antibody he is a very healthy boy. The doctor was not surprised, he told me that he did not expect anything to be wrong as he sees a very healthy boy before him. I hope we'll find a way to alleviate the antibody issue in Oakland.
We're off to Disneyland in the morning! Miss you all very much!!!!! I wish you all loads of happiness and good health!!! Thank you for everything!!! :grouphug :grouphug :grouphug
Love,
Sharmin