Joint Pain in Thalassemia

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Offline Andy Battaglia

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Re: Joint Pain in Thalassemia
« Reply #45 on: February 03, 2007, 05:08:50 PM »
HI Ida-Maria and welcome,

The pain before transfusion is usually caused by the excess bone marrow activity brought on by the low Hb level before transfusion. This is why it isn't as bad once you get some blood.
Andy

All we are saying is give thals a chance.

Re: Joint Pain in Thalassemia
« Reply #46 on: August 28, 2007, 07:07:51 PM »
Hi Guys,

Well as my case is preety rare and my body over the years seemed to mutate to accomodate my week reed blood cells i have had an indium chloride scan done to see where in my bones my marrow is present in light and dark shad of grayin my case every crevase of bonse structure is filled my stucture had no greys but only dark black so all this marrow and of course the body tried to make more and i developed extramedulayry hematopoesis in my brain which needed to b radiated 10 treatments with particle accelerator 300 greys given and the marrow now stopped growing or else it was neurosurgery thank God we avoided this but the pain is always there and very severe i  take hydromorphone contin 24 mg every 12 hours and fast acting dilaudid if it get unberable 4 mg  that is hoe severe the pain is these opiates used in cancer pastients, the reason aand again this is what my group of doctors says with collegues around the country is that the marrow is trying to expand so much and everywhere itputs pressure on my nerves and triggers the pain!so far we can control it but wwith opiates comes tolerance an then we need to increse the doses but well wait and see!

Any similar cases!

Ric

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Offline anae

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Re: Joint Pain in Thalassemia
« Reply #47 on: November 09, 2007, 03:12:42 PM »
It sounds very familiar to me, I have this compliants since childhood, they told my mum that it were growing pains. I believe it is caused by  iron-overload, and osteoporosis. I have pain in most of my joints. It also depends what the weather is like, when its humid, misty, cold  or raining, I have more pain than when it's sunny and dry.

My joints ache also when I am just transfused.

I use wrist and ankle braces to relieve the pain, the only pain killers I use are paracetamol and diazepam (at night, cause my legs keep moving when I sleep). Other DBA-patients are coping with the same problems, so far as I know. There are not alot of us out there ;) only 1500 around the world.

anae
Each friend represents a world in us, a world possibly not born until they arrive, and it is only by this meeting that a new world is born.
 ~*Anais Nin*~

Re: Joint Pain in Thalassemia
« Reply #48 on: November 29, 2007, 05:52:35 AM »
Hi, I have beta thal trait.  My tail bone was broken when I was at 8-10.  I have 3 other sisters and my mom was too busy to take care all of us.  Nobody knew that I had betal thal trait until I was 24.  So, when my tail bone was broken and hurt, I told my mom.  My mom didn't believe me.  I waited until I grew up before having my tail bone removed.  The bill was payed by my employer.  I started to have knee and hip pain 5 years ago after I bought a treadmill and jog everyday.  I went to see a doctor who taught me some stretching exercise and the pain was relieved.  I have had pain running around my back since 2006.  I referred to see a physical therapist.  She told me I didn't have any strength on my back.  She taught me some yoga postures and told me to practice 2-3 times a day.  It helped a lot.  I also believe swimming can help too even though I am tired to go to gym.  I went to a herbalist recently and got a prescription to help better blood circulation.  I found that my joint pain is gone too.  If this is the case, the joint pain is somehow related to fast breakdown of RBC?

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Offline hippievamp

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Re: Joint Pain in Thalassemia
« Reply #49 on: December 29, 2007, 05:54:42 AM »
I am a 30yo thal major.  I am currently being transfused every 2-3 weeks (based on my hgb-i only allow them to let it reach 10).  I am allergic to desferal as i have stated in past posts.  And currently amnot on any chelator. 

I have and have had for several years now "chronic pain" in my knees and ankles.  It is mainly a joint pain but at times it also becomes a bone pain also affecting my legs.  I describe it as an aching/throbing pain.  There hve been many x-rays n mri's n they have diagnosed it as iorn depositsin the joints which are turning into calcifications.  If you put your hand on my knee cap and i bend n unbend it you can actually feel a grinding.

Over the years I have been on many diffrent pain medication both narcotic and non narcotic.  Actually last year i was put on the phentanyl patch but that proved to be a bad idea it made me very il and i think i actually almost died.  I am now takeing 20 mg oxycontin twice daily and 5 mg oxy codone for breakthru pain. 

My pain seems to worsen with the weather as if arthritic ie cold n wet weather makes it worse.  Activity also seems to aggrvate the pain the more i do the more it hurts.  I even have a power chair to assist my mobility.  Also my stability isnot that great sometimes my knee or ankle will just give out n next thing i kowi' on the ground!

At times I think to myself i'm only 30 it shouldn't be like this then I try rto remind myself that I've come a long way n for being a thal major i'm doin pretty good. right????

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Offline Andy Battaglia

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Re: Joint Pain in Thalassemia
« Reply #50 on: December 29, 2007, 05:58:00 AM »
Have you considered Exjade?
Andy

All we are saying is give thals a chance.

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Offline Zaini

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Re: Joint Pain in Thalassemia
« Reply #51 on: December 29, 2007, 10:14:57 AM »
Hi,

I am really sorry to hear about your problems,wish you best of luck.

ZAINI.
^*^Xaini^*^

Re: Joint Pain in Thalassemia
« Reply #52 on: January 01, 2008, 07:43:15 PM »

If you put your hand on my knee cap and i bend n unbend it you can actually feel a grinding.

My pain seems to worsen with the weather as if arthritic ie cold n wet weather makes it worse.  Activity also seems to aggrvate the pain the more i do the more it hurts.  I even have a power chair to assist my mobility.  Also my stability isnot that great sometimes my knee or ankle will just give out n next thing i kowi' on the ground!

I know the feeling! For about 7/8 years( I've just turned 18  :party) I've had problems with my joints, it started off with my knees and ankles, they would just "go" as I was walking etc and I'd land on the floor. I was referred to physio where I was told I had weak muscles and given exercises to strengthen them, it made no difference. I  also have throbbing/aching pain in my joints, this started with my knees and spread to my ankles and hips, it's now beginning to affect my shoulders and elbows too. The doctors have sent me for x-rays, bone scans, and many blood tests and they can't find anything out of the ordinary, so I'm continnually on NSAID's (Naproxen at the moment) wihich help to kill the pain a bit.

The doctors think I have alpha thal minor but because of the symptoms I have and the fact that my family is from Greece where beta is more common, they think there's been a mistake somewhere, so I'm not currently on any treatment and my joints just seem to be getting worse.

Not much help I'm afraid, don't know why it happens but you're not alone!  :biggrin

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Offline Andy Battaglia

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Re: Joint Pain in Thalassemia
« Reply #53 on: January 01, 2008, 08:08:22 PM »
Although it is more prevalent in Greece than alpha thal, beta is not the only thal gene found among Greeks. (I know I had run across this article before).

From http://www3.interscience.wiley.com/cgi-bin/abstract/112699426/ABSTRACT?CRETRY=1&SRETRY=0

Quote
Abstract
Using hematological and gene mapping techniques, a cord blood survey was carried out to estimate the frequency of a-thalassemia in the Greek population. Out of 227 newborns studied, 16 (7.05%) were found by gene mapping to be a-thalassemia 2 heterozygotes (a-/aa), and of these only two had increased levels of hemoglobin Bart's in the cord blood (1.2 and 2.0%). Similarly, one heterozygote for the common Mediterranean a-thalassemia 1 haplotype (-/aa) and one for the 20.5-kb deletion type (-a)20.5/aa) were found, showing increased levels of Bart's of 4.8 and 6.6%, respectively. Four (1.76%) heterozygotes for the triple a gene arrangement (/) were found. One individual with a level of Bart's in the cord blood of 8% was found to be a double heterozygote for a-thalassemia 2 and a dysfunctional gene arrangement (-a/-(a)?). These results give an overall incidence for a-thalassemia in the Greek population of 8.4%

This is actually a very substantial number, so it is possible that you are an alpha carrier. Whether or not this is true may be hard to determine. There is a DNA test for alpha trait but it is not widely in use. Alpha thal is actually the most common thal gene in the world, but the difficulty in determining carrier status leaves most carriers undiagnosed.

Andy

All we are saying is give thals a chance.

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Offline Andy Battaglia

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Re: Joint Pain in Thalassemia
« Reply #54 on: January 02, 2008, 07:12:27 AM »
Hi Emily,

Regardless of whether or not you are an alpha thal carrier, it would not seem to explain the joint pain, as normally alpha carriers have few if any symptoms. Other possible causes should be investigated. Immune system disorders such as rheumatoid arthritis are possible causes and so is hemochromatosis, a disorder in which the gut absorbs far more iron than needed, resulting in iron overload. One of the symptoms of hemochromatosis is joint pain, caused by iron deposits. Hemochromatosis is also commonly found in people of Mediterranean origin. What Hippievamp describes as grinding in her kneecap is caused by iron deposits. There can also be other causes such as deterioration of knee cartilage, but it may be worth checking. Iron studies would be able to show whether iron is playing any role in your health problems. These are just a couple possibilities.

When the doctor suggested alpha thal minor status, did he say why he believed this? Was it after the results of blood tests?
Andy

All we are saying is give thals a chance.

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Offline hippievamp

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Re: Joint Pain in Thalassemia
« Reply #55 on: January 02, 2008, 09:50:01 PM »
Yes, I have definatly been diagnosed with hemochromotosis caused by the blood transfusion.  Ever since my extended hospital stay in feb.  I have been seeing a liver failure specialist.  My liver is fibrosed and starting to sclorose.  Also since then I have been seeing a cardiologist they thought I had primary pulmonaryhypertenson but whe they did the cardiac cath they found my levels were ok so i don't have pph but i do have atrial fibrilations (where at times I can feel my heart flutter)

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Offline Danny.H

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Re: Joint Pain in Thalassemia
« Reply #56 on: August 22, 2014, 06:16:09 AM »
Very interesting to hear (read) that lots of people are suffering from joint pain.i know this is an old post and I hope everyone that was dealing with pain in 2007 had have relieve from it. I'm a 38 y,female,nearly diagnosed (3 months ago) I'm an alpha thal trait and I have noticed  pain on my limbs that pain turned in a major joints pain , but it took virtually all the joints of my body.
As Soon as I was diagnosed as alpha thal trait I related the pain to actually intake of iron what I believe was poisoning me. I stopped the iron and did detoxes , eat a completely raw diet avoiding the foods rich in iron, and took IP 6 for a month and a little bit. I still eating clean foods ,but added a little bit of cooked food and  I added the supplements : folic acid 1.6 mg,magnesium 250mg,B-12 60 mcg,C 1.0g,D 400IU,natural E 400IU as d-alpha tocopherol succinate. I have taken this vitamins for at least two months.
I tell you that the pain in the joints turned much more bearable ,around middle of July I no longer felt it ,so I though I was ready to exercise my body so I started to exercise also .After three weeks of running,walking and bicycling I suddenly needed to stop .my knees were so badly swollen ... At first I though I did too much  bicycling, however the pain and swelling were so bad that I started to second guess. It took good three weeks to my knees went back to normal. I also noticed some bruising around some areas on my legs ,and as soon my knees started to go back to the normal I noticed that wasn't just on the knees was on all my legs but my knees were the worst areas . Since it happen in July my joint pain is back more evident on my wrists ,ankles,and knees. Today I m feeling my back also. I'm reluctant to take IP6 again once I m not a transfused thal . I have been feeling week again also.today in particular was one of the worst days since my recovery from iron .I had an episode of extreme fatigue and short of breath so I called my doc's office and tomorrow I will have some blood work done and Monday I ll be talking with my PCP again.  Wish me luck :biggrin my doc is not an specialist but  at least he is trying to understand it and not telling me I'm crazy.
Daniela

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Offline ekilucky

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Re: Joint Pain in Thalassemia
« Reply #57 on: October 12, 2014, 12:10:07 PM »
Just wanted to share my part. Being a minor , i used to have leg pains when i was a kid. Not sure whether it was joint pain or entire bone. If i remember correctly it lasted till I was 18 years. Did regular exercise with outdoor games which involved lot of physical exercise. I used to get exhausted still was happy as I was not getting the pain rather winning trophies. Doctors used to say that the body is growing , hence the pain. Still I do not know why my brothers & sisters did not had the same behavior. 

I used to take a tonic (alprovit) to boost up my energy , but today's doctor contradict saying it was just a physiological effect. I am not a heamotologist , so can not say much.

Till age of 30 , i was used to do night shift and also regular exercise. So the pain was not seen. But now being a family man, getting less time for exercise and now I get joint pains . Back Pain is random.

Thanks.
Thanks,
Eki

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Offline Danny.H

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Re: Joint Pain in Thalassemia
« Reply #58 on: August 02, 2015, 06:03:34 AM »
Check this out
http://informahealthcare.com/doi/abs/10.3109/08880018.2013.771388
I love this article  and I think is very important to all of us
Daniela

 

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