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Drugs and Drug Treatments ATG, Cyclosporine, Revlimid, Vidaza, Dacogen, ...

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  #1  
Old Fri Jun 1, 2012, 11:22 PM
marmab marmab is offline
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low back pain

I am trying to remember if others have posted about developing out-of-the-blue, constant, severe lower back/hip pain as a result of meds. I didn't have any luck searching the forums, but I do seem to recall some postings about back pain.

I have had severe, disabling lower back pain for the past week, and I can't attribute it to any kind of muscular strain, etc. I have never had back problems, ever. This is very depressing as I have always been very active (pre dx, that is). Because of this disease, I have had to give up pretty much everything but walking and basic ballet/modern dance exercises/stretching that I have always done. I have been extremely grateful and feel fortunate to still be able to do these, and I walk A LOT to make up for the other activities I can no longer do. But now this recent back "thing" has me pretty much disabled. I can barely move and am in constant pain. The doctor ordered a lumbar x-ray and renal ultrasound, and both showed nothing that could be causing this pain. I had my second ATG in early April, and am taking Cyclosporine (225mg, 2x/day), Valacyclovir (500mg, 2x/day), prednisone (30mg/day currently, tapering down), famotidine (20mg, 2x/day), folic acid (1 mg/day). I have tried some allowed pain killers, but they haven't given me any relief. And besides, I am loathe to take more drugs than I have to. Could any of these meds be causing this back pain?

Any input would be greatly appreciated! Thanks so much.

Marmab
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Marmab, F65, SAA/hypo MDS dx 7/2011. Tried ATG/CsA, IvIG, Rituxan, prednisone, Promacta -- none of these helped. Transfusion dependent until MUD BMT 7/17/14. Prep. regimen of Campath, Fludarabine & Cytoxan. Doing great. 100% engraftment. No GVHD.
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  #2  
Old Fri Jun 1, 2012, 11:50 PM
Chirley Chirley is offline
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Hi, I get a lot of bone and back pain in varying degrees of severity.

I've had a number of MRIs of the whole spine and brain and the comments always mention "empty marrow". I have never discussed these findings with my doctor but my interpretation is that my bones ache because the marrow is empty. (last BMB indicated 10% cellularity).

If you find the cause PLEASE let me know!

Regards

Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
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Xq19.36 mutation
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15q11.2 deletion
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  #3  
Old Sat Jun 2, 2012, 08:57 AM
marmab marmab is offline
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bone ache

Thanks, Chirley, for the reply. Do all your bones ache, or mainly the back? The nature of my pain is such that it feels like my lower back/hips are having a hard time supporting my body, as if they're about to give out at any time. Don't know if this could be attributed to lack of cellularity or not. I'll let you know if I find out any more about it.

Marmab
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Marmab, F65, SAA/hypo MDS dx 7/2011. Tried ATG/CsA, IvIG, Rituxan, prednisone, Promacta -- none of these helped. Transfusion dependent until MUD BMT 7/17/14. Prep. regimen of Campath, Fludarabine & Cytoxan. Doing great. 100% engraftment. No GVHD.
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Old Sat Jun 2, 2012, 11:54 AM
Marlene Marlene is offline
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Make sure they check your urine for a kidney or bladder infection. Sometimes the only sign is pain.
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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 Sat Jun 2, 2012, 12:16 PM
marmab marmab is offline
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back pain

Thanks, Marlene. I forgot to mention in my post that they also checked my urine. Nothing there except slightly elevated glucose, probably due to the prednisone.

Marmab
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Marmab, F65, SAA/hypo MDS dx 7/2011. Tried ATG/CsA, IvIG, Rituxan, prednisone, Promacta -- none of these helped. Transfusion dependent until MUD BMT 7/17/14. Prep. regimen of Campath, Fludarabine & Cytoxan. Doing great. 100% engraftment. No GVHD.
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Old Sat Jun 2, 2012, 02:27 PM
Hopeful Hopeful is offline
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Hopefully it is not this, but if the pain continues, you may want to discuss with your doctor getting an MRI to check for avascular necrosis from the prednisone. Xrays usually aren't sensitive enough in the early stages of the disease.
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Old Sat Jun 2, 2012, 03:24 PM
riccd2001 riccd2001 is offline
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What helps me from time to time...

What helps me, as suggested by my GP(now retired) is to use a firm but not too large pillow on my lower backside when sitting. In particular, laying on my back in bed using the pillow has helped a lot. I can't say my lower back pain is extremly severe as yours, but it does reoccur from time to time.
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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  #8  
Old Sat Jun 2, 2012, 07:31 PM
marmab marmab is offline
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thanks for input

Thanks, all, for your input. Avascular necrosis is something I worry about. Although it is supposedly rare, I have three friends who had hip replacement (two are on their second set!) in their 30s and 40s as a result of avascular necrosis of the hips from taking prednisone. I will ask my doc and NP about it on Monday. I have tried heat on my lower back, but it hasn't helped much. I finally gave in to drugs and took long-acting oxycodone this morning, which did get me through the day.

Thanks again!

Marmab
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Marmab, F65, SAA/hypo MDS dx 7/2011. Tried ATG/CsA, IvIG, Rituxan, prednisone, Promacta -- none of these helped. Transfusion dependent until MUD BMT 7/17/14. Prep. regimen of Campath, Fludarabine & Cytoxan. Doing great. 100% engraftment. No GVHD.
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  #9  
Old Sat Jun 2, 2012, 09:19 PM
Chirley Chirley is offline
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I don't have pain in all bones. It occurs mainly in my lower back (crampy), across the top of my pelvis, upper back between the shoulder blades, base of skull, sternum and both hips but right worse than left.

I have been told I have osteoporosis due to the copper deficiency and the related Vitamin D deficiency. I have already had 4 fractures in my spine, two of which needed surgery.

I also worried when I was on steroids even though I've never been on high doses or for a long time (lots of shorter periods). Cross fingers, besides breaking the same toe three times so far no other dramas.

I was amazed that the MRIs could show marrow problems. Maybe it could be a non invasive way (instead of BMB) to monitor cellularity.

I think pain is a good indicator for potential problems and should always be investigated to find the cause. I hope your doctor orders more tests so you can get some answers.

Regards

Chirley
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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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  #10  
Old Wed Jun 6, 2012, 10:16 AM
Sally C Sally C is offline
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Because my husband Don has been on Prednisone his doctor ordered a bone density test. Sure enough he has osteopenia - pre-osteoporosis - which is a weakening of the bones - usually in the hips, spine and with Don - his thigh bones. I don't know if this is the cause of your pain but it may be worth checking out.
Sally
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  #11  
Old Thu Jun 7, 2012, 08:47 AM
marmab marmab is offline
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bone pain

Thanks Sally. I'm going to have an MRI to try to figure out what is going on. No relief yet.

Marmab
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Marmab, F65, SAA/hypo MDS dx 7/2011. Tried ATG/CsA, IvIG, Rituxan, prednisone, Promacta -- none of these helped. Transfusion dependent until MUD BMT 7/17/14. Prep. regimen of Campath, Fludarabine & Cytoxan. Doing great. 100% engraftment. No GVHD.
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