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Help! My sister is in Pain

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kimi:


Hello,

I am new to this group and I hope that someone can help me. I am B Thal Minor and my sister, Chere', is B Thal Major. She has been taking medication for pain caused by her sickness since 1999. She is now 30 years old, and has had her spline and gaul blatter removed. She is dependent on her meds and blood transfusions. Her doctor's have prescribed Morphine, Oxycotine and Oxycodine in the past and recently she began taking Darvocet and Percocet. The side affects of the medication has totally robbed her of her outgoing lifestyle and nature. She is constantly in pain, and I believe that her body is now dependent on the meds and the worries about the medicine is now outweighing our worries about her sickness. The doctors have focused her treatment on pain management, and not treatment of her actual sickness. She gets blood transfusions, and has been in Iron overload a few times....but for the most part they just keep giving her meds to keep her "comfortable". I don't believe her sickness is to the point were she needs these types of medicines, it's just that they started her on these meds a while ago and she built a tolerance so she now needs them for pain. We have thought about putting her in rehab, but I am unsure of how that will help her because she is dependent but not addicted to the meds. She takes them for pain and not to abuse them....but with these meds we don't want "abuse" to begin to occur being as though they are VERY addictive.

Therefoe, are there any other meds out there that can treat her Thal Major and her pain? Does anyone know anything about Medical Cannibus? I am honestly willing to consider every alternative, because I DON'T WANT TO LOSE MY SISTER! And I feel like she is slipping away and losing hope. She's been sick for ~ 11 years since she was 19 and I think the medicine, and not the illness, is what' holding her back. She has been ridiculled and treated badly by doctor's in the past for her dependency on the meds and there are few ppl in our home state that truely understand her illness. PLEASE HELP ME.

Kimi ???

Andy Battaglia:
Hi Kimi,

Where is your sister getting treated?

What type of pain is she having? What is causing it? Is it bone pain? It will be very hard to reduce the pain medications if her pain is still severe, so the cause of the pain needs to be addressed first.

§ãJ¡Ð ساجد:
Hi Kimi,
:welcome to the site.

I'm sorry to hear about your sister. Can you tell us more about the pain she suffers and what do the doctors say about it. Mostly Thal. is a pain less disorder (except for the needles part  :biggrin )

What do the doctors say about the possibility of Sickle Cell Anemia?

sydneygirl:
Hi Kimi & welcome,
sorry to hear of your sister's situation & pain,from reading your post is your sister in pain from the iron overload? is that what u meant?
oxycotine is a strong & addictive pain reliever and shouldnt be used long term from my knowledge (but check with a doctor/someone who knows more about it) my sibling was on oxycotine & i know its a powerfull.addictive tablet.It took years for him to get off them as he oringally took them for bone fractures.your sister needs support from doctors & family.Take care & i wish u & your sister all the best.

kimi:
Thanks for your replys....

My sister is receiving treatment in North Carolina. She has been to Duke and Greenville Medical Center for treatment. She also visited a center in Atlanta Georgia. She first received treatment when she was born, until she was ~ 8. Then she didn't really have any Thal problems, until she was about 19 years old. She participated in a high school Jr. Miss padgent and experienced joint pain while working out. She went back to the Dr. in Greenville and they said that her Thal was the problem and they started her on treatment. In the beginning she just took Hydroxy-Urea and Folic Acid, but when she was 22 (a junior in collge) she got worse and started blood transfutions. Later that year she had her spleen and gall blatter removed. I don't know why they started giving her pain meds exactly. She has a rare form of Thal that "looks" like Sickle Cell but it is not. I think it is B Thal (h) or (s) B Thal, I'm not sure. She has B Thal Intermedia/Major w/ sickled cells. She relies on Blood Transfusions for treatment and has experienced Iron overload because of them. I think she has the blood transfusions when her blood count is extremely low. I also think the meds might make this worse. Do you know anything about that? 

So b/c of this confusion they treated her for Sickle Cell Anemia at Duke and in Greenville for a long time. Maybe her pain came from joint issues in the begining and they gave her these meds. But like I said previously....her pain is not only from her Thal now...it's from the meds. THEY NEVER SHOULD HAVE GIVEN THEM TO HER IN THE FIRST PLACE. I don't think they don't really understand Thal in North Carolina, so they thought it was Sickle Cell and treated her like a Sickle Cell patient and not a Thal patient.

[Please note: North Carolina is #3 in the nation in over prescribing Morphine and other hard meds for pain treatment.]

We just want to get her off of these hard meds and back on track with treating her Thal. The meds are making it harder to get to the root issue, and they are hell on her body.

If you have any advice on what we can do, please let me know. It is really affecting my family and her quality of life. She is depressed b/c she has spent her youth dealing with this issue. I FEEL LIKE SHE HAS BEEN ROBBED OF THE BEST YEARS OF HER LIFE. It's been like this since she was 19 and now she's 30. My heart hurts for her and I want to do everything I can to help her, even if it involves moving her someplace where people understand Thalassemia.

Thanks and God Bless.

kimi  :-\

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