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AA Aplastic anemia

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Old Sun Nov 11, 2012, 08:14 PM
Tyrell Tyrell is offline
Join Date: Nov 2012
Location: Provo, utah
Posts: 2
Partial Remission Pain


I have searched and searched for answers or at least something related to my recent problems and i have not had any luck so i really hope that someone out there reads this and can help me understand how to cope.

It has been 8 months since my last transfusion and although it seams i have dodged a bullet here i have a whole new set of problems. Let me give you a quick background. I am a 30 year old Sever AA survivor. I was treated with 2 rounds of ATG with no response and a transplant was not an option because of the condition my liver is in. I suffered liver failure at age 17 and thanks to hyper-barrack treatment was able to recover without a liver transplant but it left me with stage 4 cirrhosis. After not responding to the second treatment of ATG i made the hard choice of termination treatment and living out the remainder of my days with supportive care. Unexpectedly 3 months after stopping immune suppressive therapy my blood level stabilized at just above critical. Meaning I am not in need of regular transfusions however my levels are no where near normal so i live my days in a constant state of anemia.

5 months ago i randomly came down with shingles ( worse pain i have experienced) since then i have never been comfortable with my pain level. I am on a pain regiment of 30mg of time released morphine twice daily and 15mg oxycodone for relief of acute pain. Its not working any more i find myself on double the dose with no relief and my doctor has been reluctant to increase my dosage (understandably as this is already a strong regiment).

So down to the concern and questions. I am in a constant mental battle of "Am i in pain or addicted?" every time i reach for my med bottle i have to ask myself "Do i really need this?" More and more times i convince myself i don't and the result is immobilizing pain. Its mostly in my joints and not centralized anywhere. I feel like its a severe muscle cramp in my spine, then a radiating pain to my extremities followed by a migraine that lasts for days. The pain in my joints is a constant never ending throb. I am so scared and frustrated and confused on how to find relief.

Has anyone out there experienced anything like this. Do any of you that have survived this disease without a BMT and find themselves in partial remission have a continued problem with pain?

Thank you in advance for your input,
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Old Mon Nov 12, 2012, 03:38 PM
Marlene Marlene is online now
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,349
Hi Tyrell,

Is your pain post-herpatic from the shingles? If so, you should explore using Gabapentin for nerve pain. Also, do you think you still have an active infection of some sort which can result in pain?

Regarding pain. There is nothing wrong with taking pain meds if you need it. You are not addicted. There's difference between being addicted and dependent on a medicine. A good pain clinic can help you find the right mix of meds for you.
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Mon Nov 12, 2012, 08:37 PM
Hopeful Hopeful is offline
Join Date: Jan 2009
Location: California, USA
Posts: 721
Hi Tyrell,

Just as a data point... I had a partial response and am not in constant pain. My joints ached when my cyclosporine dosage was adjusted or when my blood cells were increasing in number. The pain never lasted more than a few days though.

Hope you can sort out the cause!
53 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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Old Mon Nov 12, 2012, 09:19 PM
ssdavi71416 ssdavi71416 is offline
Join Date: Mar 2012
Location: Atlanta Georgia
Posts: 105

I am 7 months post ATG Hgb 10, platelets 58, WBC 3, ANC 2000. I have pain I did not have before AA, but I think your pain is a couple of levels above mine. I have random twinges of pain in my hands and feet. I am also dealing with gallbladder issues that are very painful. Our (AA patients with partial response) bodies are still not dealing with the correct amount of bllod cells and so things just don't work as well. Drs are so afraid to give narcotics. If you are being prescribed them youl need them. I think Marlenes advice about going to a pain Dr is a good idea. Hoping for all the best for you

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Old Mon Nov 12, 2012, 11:42 PM
Tyrell Tyrell is offline
Join Date: Nov 2012
Location: Provo, utah
Posts: 2
Thank you for the advice and input,

Today on my way to work i experienced a major loss of control of my left arm, my back locked up and i was very disoriented and full of anxiety . My blood levels were encouraging. Everything was up from my last check so that is a good thing but doesn't help me diagnose the pain but i have come to a couple conclusions.

I am scared from the shingles i contracted and the pain today started an itch that i couldn't reach but attempting to scratch that itch pain shot out from mid spine like i had been stuck with 100 needles. A residual achy feeling still wraps around mt rib cafe. Predominantly on my left.

Also i spoke with a few people that have experience over coming addiction. I have been on this pain regiment for over a year. I know the signs of addiction now and better understand the pain.

I am know the pain is a real problem but the addiction has resulted in a form of withdraw which adds to the pain and sends me inyo a panic attack I am scheduled to see the doctor this week to discuss my options. Ill post an update once i have more information
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Old Tue Nov 13, 2012, 01:46 AM
Chirley Chirley is offline
Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Hi Tyrell, I hope you don't have a prescription med addiction. I've always been scared of taking anything potentially addictive because I always questioned whether I would have the emotional strength to overcome the withdrawal process.

I wish you well, it's a dilemma isn't it? Do you want it to be an addiction problem which you'll need to deal with or is it physical pain which could mean an underlying medical problem? Either way, it can't be pleasant for you.

A dedicated pain doctor sounds like the way to go.


Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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