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  #1  
Old Thu Oct 10, 2013, 01:27 AM
Ellen McDonough Ellen McDonough is offline
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aplastic anemia and sudden severe hip pain

Has anyone else ever experienced sudden onset of severe hip pain with aplastic anemia? I have had right hip pain that started about 2-3 months ago but has gotten really bad over the last 3 weeks. I can't sleep on my right side.It is waking me up at night.I can't stand the seatbelt hitting the pelvic/hip bone. I constantly have to shift my position sitting.I have not execised or had any trauma that could have caused this.I have had an enlarged right lymph node for 6 months in my groin but had a PET scan that was negative .Got results today. Any one ever heard of avascular necosis in aplastic anemia? I have pain over the iliac area, deep inside the trochanter and the groin and behind the right knee at times.
I have had severe aplastic anemia since 4/2009 with partial remission. Labs are stable.
Would love any thoughts. Thanks,Ellen
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Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
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Old Thu Oct 10, 2013, 04:06 AM
NLJabbari NLJabbari is offline
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Hi Ellen, I've heard of a couple of people (Marrow Forums Members) who suffered with this condition. I think in their case(s) it was due to prolonged use of Steroids.

You might want to visit Laura's or Grant's CB pages as they both recently have dealt with a similar or perhaps the same condition you are describing. I believe Grant had a hip replacement, but I'm not sure if Laura did.

www.caringbridge.org/visit/laurajevans or
www.caringbridge.org/visit/grantbeltrami
(Wendy his mom moderates his sight)

I hope this helps.
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  #3  
Old Thu Oct 10, 2013, 11:58 AM
DanL DanL is offline
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Ellen,

I have MDS, not AA, but was on high dose prednisone for several months when the doc thought that I had ITP. Within 6 months, i developed avascular necrosis in both hips, my feet, and felt pain in my knees as well. Most of this has subsided now, and the issue only flares up occasionally.

The sports medicine doctor that I saw said it could be the steroids, or it could be that the blood is thinner and the walls of the veins collapse causing the pain.

Have you been on any steroids?
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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. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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Old Thu Oct 10, 2013, 09:58 PM
Ellen McDonough Ellen McDonough is offline
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I have been on steroids several times. Not chronically. I also took for about 1 1/2 years Andriol - an anabolic steroid I got in Europe to raise my platelet counts. They used to run between 15-20 and I took low doses of Andriol from 12/2009 until weaned off in early 2011.My platelets have continued to stay steady at around 115-120 give or take. It has been several years since I have taken Andriol and was under the supervision of quite a few hematologists when I was taking that medication.I don't know this far out if it could still affect me?
The other steroids have been in bursts for short time periods and not any recently.I was using steroid eye drops for about 6 weeks in May and June 2013 for a persisent iritis-proabably autoimmune.
Thanks so much for your responses!It is helpful as maybe I am onto something here.... The doctors I have seen so far are puzzled and shrugging their shoulders.Don't quite know what to think.
Thanks,Ellen
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Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
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  #5  
Old Thu Oct 10, 2013, 10:56 PM
DanL DanL is offline
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I performed an few searches and did not see anything that directly correlated Andriol with AVN. I did see a few different articles that suggested a correlation (not really a causal relationship) between Cyclosporine and AVN though.

Through the past few years in dealing with MDS, I am pretty well convinced that what is supposed to happen and not supposed to happen are best guesses, and that "rare side effects" mean that under normal circumstances, they should not be likely.

For the AVN, I have had great success working on really stretching and working on the range of motion in my hips, working on exercises that do not increase pain while doing them, and then stretching some more. 2+ years ago, I could not get out of a chair without using both hands to push myself up. I rarely have any pain today.
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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. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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  #6  
Old Fri Oct 11, 2013, 01:45 AM
Chirley Chirley is offline
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Ellen I have hip pain. Originally I was told that it wasn't associated with my disease and it was dismissed as trivial.

The pain started limiting movement so the haematologist ordered an MRI of my hip (I've had lots of steroids). It turned out to be a torn cartilage, arthritis etc. I don't know how true this is but I was told that chronic anaemia can cause lack of blood supply to joints etc and they are more prone to injury without significant trauma.

I suggest you ask for an MRI because X-rays and CTs don't always show cartilage tears.

Cheers.
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  #7  
Old Fri Oct 11, 2013, 09:13 AM
Ellen McDonough Ellen McDonough is offline
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Thanks so much everyone.I have an MRI now scheduled for 10/31/13. Hopefully it will show the cause of this hip pain.Thanks,Ellen
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Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
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  #8  
Old Fri Oct 25, 2013, 04:41 AM
Ellen McDonough Ellen McDonough is offline
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I got my MRI results back and no AVN. So that is great news. Still having bad enough hip pain to wake me up at 1:30am as I write this on a night before I have to go to work.I see the orthopedic Dr 11/19. Still have an enlarged right groin node as well for 6 months. Have had recent PET scan that was negative for any cancer.
Have had some strange vaginal spotting post menopause a few times the past month .I guess if any female cancer is happening -It should have shown up on the PET?
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Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
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Old Fri Oct 25, 2013, 05:15 AM
Chirley Chirley is offline
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Ellen, post menopausal bleeding or spotting is always a worry. Are you seeing someone about it?
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FISH reported normal cytogenetics but gene testing showed
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  #10  
Old Sat Oct 26, 2013, 12:25 AM
Ellen McDonough Ellen McDonough is offline
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Yes Chirley.
I am seeing the gynecologist on 10/31.I know it is a concern .Hopefully it will be ok since the PET that was done 2 weeks ago showed absolutely nothing.
Thanks
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Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
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  #11  
Old Sun Oct 27, 2013, 03:11 PM
Karenish Karenish is offline
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Just a quickie, get gynae to test for pappiloma virus? hpv...apparently many women have it, and it can cause spotting and if your whites and neuts are a bit low you can't fight it as well and it gives the same symptoms as cervical cancer, I have to see gynae every 6 months while on cyclo as cell change is detected in smears. This time they let me watch on a camera, she put some vinegar type stuff on the entrance to the womb and if it turns white it is risky, but mine stayed lovely and pink, BUT i bled slightly. She said this was normal.
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Old Tue Oct 29, 2013, 10:38 PM
Jgriffin9 Jgriffin9 is offline
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Unhappy

Hi Ellen I also have been having a lit of hip pain it started on the right hip and now its starting in the left hip, MRI says no AVN whivh is good. Now I have begun having nerve pain in my right thigh muscle which gets quite painful when walking around, its like a burning sensation. So far the doctors have no idea whats causing it. I have had CT scans, and MRI's of my hips, back, and head. Let us know if you find anything out.
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Old Tue Oct 29, 2013, 11:58 PM
Chirley Chirley is offline
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Hi, I was diagnosed with this years and years ago. I was offered an operation to release the nerve but decided that as it wouldn't cause any problems, that I'd just leave it alone. Interestingly, the surgeon that I saw had it as well.

Meralgia paresthetica occurs when the lateral femoral cutaneous nerve a nerve that supplies sensation to the surface of your outer thigh becomes compressed, or "pinched." The lateral femoral cutaneous nerve is purely a sensory nerve and does not affect your ability to use your leg muscles.

Pressure on the lateral femoral cutaneous nerve, which supplies sensation to your upper thigh, may cause these symptoms of meralgia paresthetica:

Tingling and numbness in the outer (lateral) part of your thigh
Burning pain in or on the surface of the outer part of your thigh
Less commonly, dull pain in your groin area or across your buttocks
These symptoms commonly occur only on one side of your body and may intensify after walking or standing.
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Old Tue Dec 3, 2013, 10:15 PM
Ellen McDonough Ellen McDonough is offline
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Finally got to see the orthopedic Doc today and he thinks I have trochanteric bursitis. Got a steroid injection. Hip hurts this eve worse but I expected it would.Hopefully it wll help soon.
Had an endometrial biopsy which was without abnormal cells.Still have the enlarged lymph node in the right groin[same side as the hip pain].
The Ortho Doc asked me to ask my hematologist about autoimmune osteonecrosis which I did.Hematologist wants to discuss with ortho and get back to me.MRI did not show any AVN.
My labs are very good these days after 4 1/2 years of diagnosis of SAA. I am still taking Cyclosporin 25 mg twice a day. My hematologist suggested weaning off which I am game to do.
He says if my labs remain where they are off Cyclosporin he state I am in remission.
Current labs are WBC-3.5 neutraphyl-1.3-1.6 , Hgb-13.0, Hct-36, Platelets -140--that is the highest they have ever been. I was treated for endometritis a few days after this lab was done but my labs have been pretty stable waxing and waning a bit from here.

If so I was treated with horse ATG at diagnosis... do you ever really have a remission this far out from treatment? How is one monitored from here on? as I know I would still be at higher risk for PNH,MDS and AML?
If I am in remission when I go off Cyclosporin I wonder why I feel so fatigued still and still bruise more easily? How would one know if the aplastic anemia were to come back or if the ATG were to finally wear out?
Just wanted to ask others who might know more than my local hematologist.
Thanks,Ellen
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Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
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Old Wed Dec 4, 2013, 06:48 AM
Cheryl C Cheryl C is offline
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I get hip pain which wakes me early in the morning - sometimes quite severe - from about 2:30 or 3:00 am onwards. Many years ago my husband and I were camping and sleeping on an air bed when it turned really cold. The air bed was like a slab of ice and there was nowhere else to go because it was pouring with rain and the air bed was an island. My hip pain started after that episode back then and was apparently bursitis.

However the interesting thing is that since I've been on the Intragam (gamma globulin) infusions, for the first 3 weeks or so afterwards, my hip pain pretty much disappears and only resurfaces around a week before the next infusion is due, which is about when my globulins start to drop again I guess.
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Old Wed Dec 4, 2013, 09:06 AM
Ellen McDonough Ellen McDonough is offline
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Cheryl,

Very interesting! I asked if it could an autoimmune cause for my hip pain as I didn't have trauma before or do any repetative sports .I have had autoimmune iritis last spring as well. The ortho Deoc said no but I still wonder.Your story makes me think maybe the hip pain could be some how autoimmune related.
Thanks for sharing.
Ellen
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Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
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Old Thu Dec 5, 2013, 07:22 AM
Cheryl C Cheryl C is offline
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I've only begun to realise this in the last few months myself, and am looking forward to discussing it with my specialist.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #18  
Old Thu Dec 5, 2013, 06:49 PM
Chirley Chirley is offline
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Ellen, I had the injection in the trochanteric bursa too....did nothing. That's when they decided on the MRI and found the cartilage tear. The radiology tech said they were lucky to find it because they normally do a special MRI where they inject into the hip joint before scanning to find these tears.
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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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  #19  
Old Fri Dec 6, 2013, 09:10 AM
Ellen McDonough Ellen McDonough is offline
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Hey Chirley,

How are you ?
Thanks for the info. I "ll keep it in mind as it's been 4 days since injection and so fr not much releief.
The thing is I try to stay active because I think it helps me with maintaining my overall health-so have been hiking, swimmimg and biking when I can.The hip hurts more after but I would think I couldn't do these things if something were torn.
The ortho Dr said if I wasn't better he would do another injection but I would mention to him what you had the next time.
Any thoughts from folks on remission ideas or maybe I should look for or start another thread?
Thanks,Ellen
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Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
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