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  #1  
Old Mon Dec 1, 2014, 11:45 PM
Chandra4intx Chandra4intx is offline
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Pain/tightness in muscles and tendons 7 months post BMT

Hi all! I haven't posted on here in a while. I went through a bone marrow transplant on May 1st 2014. Since then things have been up and down but overall, I have had a pretty good recovery. I am 7 months post and have been off of my meds for 1 month now. My biggest issue is severe soreness in my muscles upon getting up in the morning or just after sitting for a bit. I also feel like my tendons are very tight. I have been doing yoga throughout my recovery and it seems to help a bit. I am just wondering if anyone else has had this and if so, does it get better? I need to go back to work soon and am worried since I work a pretty physical job as a pediatric occupational therapist. Any advice would be appreciated! Thanks!
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Chandra, 40 y/o wife and mother of 2 girls; DX SAA Dec 2013; H-ATG Jan 2014; Prior to ATG:HGB 8.3, HCT 24.3, Platelets 10, WBC 1.9, RBC 2.67, ANC 100; April 30, 2014 matched sibling donor BMT; currently off meds and counts are normal!
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  #2  
Old Tue Dec 2, 2014, 10:22 AM
DanL DanL is offline
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I have had intermittent issues with muscle soreness, mostly in the calves, feet, and knee-to thigh connections. I have recently been tested for adrenal insufficiency and am taking cortisol, with tacrolimus, which seems to be helping just a week later. the other areas to check on are potassium, calcium and magnesium levels. If these are low, they can cause quite a bit of fatigue.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #3  
Old Tue Dec 2, 2014, 10:50 AM
Chandra4intx Chandra4intx is offline
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I know my magnesium is normal but low normal, not sure about calcium and potassium, will check. Thanks!
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Chandra, 40 y/o wife and mother of 2 girls; DX SAA Dec 2013; H-ATG Jan 2014; Prior to ATG:HGB 8.3, HCT 24.3, Platelets 10, WBC 1.9, RBC 2.67, ANC 100; April 30, 2014 matched sibling donor BMT; currently off meds and counts are normal!
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  #4  
Old Fri Dec 5, 2014, 05:17 AM
SLB SLB is offline
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Hi Chandra,

I am 21 months post transplant and still struggle with muscle soreness and yes feels like my tendons are tight. My wrists are especially problematic, really sore to flex back and quite weak. I have tried short courses of steroids that do seem to help temporarily but always comes back after about a week. Unfortunately the steroids disrupt my sleep so much that I hate being on them! Recently my arms are also sore. The doctor really doesn't know why this is, so really I just live with it! (Figure the is the least of my worries). For many months after transplant my upper leg muscles were really weak (still are really) so getting up (especially after sitting for awhile) was interesting! At that time, the doctor blamed muscle wastage from steroid use (to control GVHD).

Must say I am jealous and amazed you are off all meds already! That's fantastic. I tried weaning off the cyclosporin but flair ups of GVHD stopped that! Hopefully all going well the doctor is going to try to decrease it down again in January.

So really I have no insight into why or what it do about it but to say I to suffer too! If you find out any solutions, keep me posted!
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Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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  #5  
Old Fri Dec 5, 2014, 07:57 AM
Chandra4intx Chandra4intx is offline
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Thank you so much for your response SLB! At least it's good to know, I am not alone on this! My wrists hurt a lot too with the tendons feeling too tight. It is a strange feeling. I really try to stay active but can't tell if that helps or makes it worse. My doc blamed it on muscle atrophy due to steroids as well. Maybe things will gradually get better. Like you said, if that is the biggest thing then I guess we can live with it. Hope you are able to get off meds soon! I do think that helped somewhat. Good luck!
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Chandra, 40 y/o wife and mother of 2 girls; DX SAA Dec 2013; H-ATG Jan 2014; Prior to ATG:HGB 8.3, HCT 24.3, Platelets 10, WBC 1.9, RBC 2.67, ANC 100; April 30, 2014 matched sibling donor BMT; currently off meds and counts are normal!
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  #6  
Old Fri Dec 5, 2014, 10:13 AM
bailie bailie is offline
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Chandra, maybe I missed it but has this "tightness" been with you from Day +1, or did you notice it later on?
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #7  
Old Sat Dec 6, 2014, 10:42 AM
Chandra4intx Chandra4intx is offline
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Bailie,
None of it really started until about 3 months after transplant. It started with really sore/aching feet and leg muscles and then the tightness. Although, I had so many yucky symptoms those first 3 months that it may have been there earlier and I didn't notice it due to the other things. It basically all started when I became more active and started moving around doing daily activities and being on my feet more.
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Chandra, 40 y/o wife and mother of 2 girls; DX SAA Dec 2013; H-ATG Jan 2014; Prior to ATG:HGB 8.3, HCT 24.3, Platelets 10, WBC 1.9, RBC 2.67, ANC 100; April 30, 2014 matched sibling donor BMT; currently off meds and counts are normal!
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  #8  
Old Sat Dec 6, 2014, 11:27 AM
bailie bailie is offline
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It is amazing how everyone seems to have different situations. I asked because I am at Day +114 and have had no problems at all, but I keep waiting for "the other shoe to drop". I walked four miles at a very fast pace two days ago and felt great. I suppose that one of these days I'll be playing catch up on some of the problems I have missed so far. Thank you for the information and questions.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #9  
Old Sun Dec 7, 2014, 10:50 AM
Chandra4intx Chandra4intx is offline
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I have been doing some research and I am beginning to wonder if this has to do with being on Cipro(antibiotic) for long periods of time. Apparently, being on Cipro can cause problems with tendons and tendon rupture (yikes). And being on it in conjunction with Prednisone can increase the problems. I guess it can be during taking the meds or up to months after. Anyone else hear of this?
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Chandra, 40 y/o wife and mother of 2 girls; DX SAA Dec 2013; H-ATG Jan 2014; Prior to ATG:HGB 8.3, HCT 24.3, Platelets 10, WBC 1.9, RBC 2.67, ANC 100; April 30, 2014 matched sibling donor BMT; currently off meds and counts are normal!
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  #10  
Old Sun Dec 7, 2014, 11:57 PM
DanL DanL is offline
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levoquin can cause this as well, especially in combination with steroids. I am glad that you mentioned the cipro as it jogged my memory about the antibiotic I have been taking in the last couple of months, as there is an article from the NIH showing the connection between stiff tendons and tendonitis and levoquin, which I take periodically. I never had symptoms like this until I began taking the levoquin when my WBC were really low.

http://www.nlm.nih.gov/medlineplus/d...s/a697040.html
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #11  
Old Mon Dec 8, 2014, 08:50 AM
Marlene Marlene is offline
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Yes, that class of drugs, fluoroquinolones, has some serious side effects. Even though John is not allergic to them, we list it as a drug to avoid. We found that doctors are very quick to prescribe Levaquin as a fist line treatment drug for infections when other antibiotics would be more appropriate. We have had to ask to for the safest, most effective antibiotic versus just going straight onto levaquin.

It can cause neurological problems as well as the tendon issues already mentioned here. Tendon issues can happen many months later. John has had both. He has neuropathy and he ruptured his quad tendon. So we stay away from these as much as possible.
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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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  #12  
Old Mon Dec 8, 2014, 11:20 AM
Chandra4intx Chandra4intx is offline
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I was on levoquin at the beginning of my dx as well. I asked to be taken off of that and they replaced it with cipro which is still in the same family. From what my pharmacist told me, the side effects weren't supposed to be as severe. But apparently, as I am finding out, it can still cause issues. Marlene, how long after being off of the meds did your husband rupture his tendon? Or was it when he was still on them? This worries me, as I am trying to become more active but don't want to hurt myself further in the process. I wonder if it is supposed to get better with time?
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Chandra, 40 y/o wife and mother of 2 girls; DX SAA Dec 2013; H-ATG Jan 2014; Prior to ATG:HGB 8.3, HCT 24.3, Platelets 10, WBC 1.9, RBC 2.67, ANC 100; April 30, 2014 matched sibling donor BMT; currently off meds and counts are normal!
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  #13  
Old Mon Dec 8, 2014, 12:20 PM
Marlene Marlene is offline
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It was actually about two years for him. But his knee had been bothering him for quite some time. But it was the least of his issues and it wasn't something he thought about. I think the other thing that played into it is the fact that his red cells were low for a long time. He was transfusion dependent for two years and and then still stayed low for a long time after that. His HGB gets to 12 at best now. So I think the nerve damage, low HG and drugs all played a part in it. Tendons don't have a lot of blood flow anyway. The nerve damage causes a lot of stiffness in his ankles and feet. And can effect blood flow.

It's also important to address nutritional issues as a result of the treatment. Since your magnesium is a low-normal, you may want to start there with a good mag. citrate or glycinate. John was pretty depleted on many things. And drugs will deplete and/or disrupt absorption.


I understand your concern. Wonder if a good ortho would be able to evaluate this for you?
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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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  #14  
Old Sun Apr 17, 2016, 12:03 PM
Chandra4intx Chandra4intx is offline
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Joint and muscle pain, ugh!

Hello again everyone! I haven't posted since December 2014, which is great news since it means things have been going pretty well! I am just about at my 2 year anniversary! I continue to have issues with my muscles/tendons/joints. They have definitely gotten better since my last post but now I have a new issue. I have been doing light exercise such as some weight training and yoga. But, about 3 weeks ago, I decided I was ready to really get back in shape and I started a "boot camp" with a friend. Unfortunately, after a week of this(lots of squats, lunges, running, jumping on concrete) I began having severe pain in both of my knees. Needless to say I have taken a break form boot camp. I am still doing my normal activities and some yoga but I have to take ibuprofen to keep them from hurting. As soon as it wears off they hurt terribly again. I am planning on going to an orthopedist but wanted to see if anyone has had flare ups of arthritis or anything of that sort after becoming more active. My mom tells me I need to be thankful that I am doing so well after transplant and don't get me wrong I am so very thankful but, it's very frustrating because I feel like a really old lady limping around and I truly want to get back in shape!
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Chandra, 40 y/o wife and mother of 2 girls; DX SAA Dec 2013; H-ATG Jan 2014; Prior to ATG:HGB 8.3, HCT 24.3, Platelets 10, WBC 1.9, RBC 2.67, ANC 100; April 30, 2014 matched sibling donor BMT; currently off meds and counts are normal!
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  #15  
Old Mon Apr 18, 2016, 05:12 PM
Hopeful Hopeful is offline
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Hi Chandra4intx,

It is great to hear that you are doing so well after transplant!

I would strongly discourage anyone from jumping on concrete! It is the fastest way to injury, unless you are under 10 and still have rubber bones

This may not be arthritis but may be an overuse injury. Alternatively, it is possible that your knee pain is because of patella tracking issues, especially since you are still having tightness issues with your muscles/tendons. I have this problem now because of muscle atrophy.

Use ice to bring down the inflammation and try the Cho-pat strap under one of your knees. If this makes it feel better, it is likely a tracking problem and PT is in your future

Good luck - you will get through this too!
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #16  
Old Tue Apr 19, 2016, 01:45 PM
GoodDay5150 GoodDay5150 is offline
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Hi Chandra. We are glad that you are mostly doing well. I had a BMT for PNH 4 yrs ago and I still have some occ muscle/ tendon/ joint pain and stiffness. It seems to be slowly improving since I no longer take any anti-reject drugs. I try to do some stretching exercises on a regular basis and that seems to help. I just walked 2 miles of so on Sunday w/ out any issues except for some minor pain related to tripping on my stairs a few weeks ago. I had some pretty extreme swelling in my legs and feet for a while after my transplant and that has mostly gone away. Unfortunately, the side effects of a BMT and associated drugs don't always go away quickly. We all wish you continued success.

Mario
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  #17  
Old Wed Apr 20, 2016, 09:09 PM
Chandra4intx Chandra4intx is offline
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Thank you for your responses! I am still having a lot of pain I will let you all know what my hematologist says. I see him tomorrow. I am worried I may have avascular necrosis in my knees. But I guess I shouldn't jump to conclusions and try to self diagnose!
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Chandra, 40 y/o wife and mother of 2 girls; DX SAA Dec 2013; H-ATG Jan 2014; Prior to ATG:HGB 8.3, HCT 24.3, Platelets 10, WBC 1.9, RBC 2.67, ANC 100; April 30, 2014 matched sibling donor BMT; currently off meds and counts are normal!
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  #18  
Old Thu Apr 21, 2016, 08:47 AM
PaulS PaulS is offline
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Hi Chandra - don't jump to conclusions (especially on concrete) - too much worry doesn't help.

Are you still doing exercises that involve pounding on your knees - running, jumping etc? Walking distances on concrete? In my professional opinion as a former soccer coach, you sound like you have a sports injury from the boot camp that maybe you haven't allowed to heal - have you tried rest - really resting it - Are you using ice, heat? Does it still respond to advil? Are you wearing good cushioned shoes designed for running or training? Are you planning an x-ray or MRI?

I'm getting an x-ray next week for chronic intermittent hip pain to rule out avascular necrosis since I've been on Prednisone for a while - but mine wasn't associated with exercise and I think they're maybe being over cautious.

Sorry you having a hard time - hopefully it will resolve itself without too much drama.

Best,
Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #19  
Old Sun Apr 24, 2016, 10:50 AM
Chandra4intx Chandra4intx is offline
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Hi Paul,
Yes, I definitely tend to jump to conclusions! You are right worry doesn't do any good! No, I stopped boot camp. I am only doing yoga right now and only while ibuprofen is on board. Have been icing. It has been 2 weeks and the instability feels a bit better but I still have a lot of pain on the medial side of both knees between the joint when walking, if the advil wears off. My job requires a lot of squatting, getting on and off floor and lifting(pediatric occupational therapist) so that has been interesting.

You are right, I need to get some better shoes. (Recommendations?) My hematologist scheduled an MRI to rule out AVN(steroids, ugh!) as well. That should happen this next week.

Hopefully you get good results from your x-ray.
Chandra
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Chandra, 40 y/o wife and mother of 2 girls; DX SAA Dec 2013; H-ATG Jan 2014; Prior to ATG:HGB 8.3, HCT 24.3, Platelets 10, WBC 1.9, RBC 2.67, ANC 100; April 30, 2014 matched sibling donor BMT; currently off meds and counts are normal!
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  #20  
Old Sun Apr 24, 2016, 06:22 PM
PaulS PaulS is offline
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Hi Chandra - I'm not sure I noticed you were also having some instability along with the pain. I suspect the squatting doesn't help -

Your post reminded me of an ointment called Topricin - it is supposed to relieve pain and inflammation and was recommended to me by a friend/coach/distant runner when I pulled something in my calf when I was still healthy and coaching - it worked great! I think I'll try it for my neuropathy and pain in my neck - you might try it on your knees - its does't just mask pain, but makes it go away - I think by reducing inflammation - it doesn't smell or burn. I think I'm going to go get some now!

You might also try a neoprene sleeve to provide some compression and support and improve stability - might be useful for all the bending you do.

Last, I almost always wear a good running shoe - with cushioning in both the toe and heal (I haven't run for a while, but when I'm ready I'll have the shoes . Given your activities, a good cross trainer might work better - you want something that is well cushioned and provides some stability - If there is a good running shoe store in your area they should be able to help - not so much a big chain - but there you can just look for the cushioning and how it feels and fits. They have shoes designed to work with how you run/walk whether you come down flat or come down more on the side of the foot - pronate - Wearing good shoes designed for the way you walk/run can be really helpful and may take some strain off the knees, especially if you pronate. I like Aasics (Nimbus, which is not for pronation) - but the most important thing is the fit and whether or not you need a shoe for pronation
Don't cheap out - good shoes are really important!

To see if you pronate, look at how your shoes wear out - if they wear on the side then you probably pronate.

Wouldn't it be nice if you just have an ordinary sports injury completely unrelated to your transplant!

Let me know how it goes.

Best,
p
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #21  
Old Wed May 4, 2016, 08:13 AM
PaulS PaulS is offline
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Hi Chandra - how are you doing? Any improvement? My x-rays were negative for arthritis and necrosis - (although positive for vascular calcification). Did you're tests show anything?

Hope you're doing well -
paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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