Any Thoughts?

[florence]

All --

I will post an introduction in just a second, I promise.  I am writing to see whether any of you have experienced any of these symptoms/problems.

My husband has been on dialysis for approximately 10 years.  He's a young guy --31 years old.  He lost his kidney function rapidly due to FSGS.  He had a transplant but lost it due to recurrent FSGS.  He has been on different dialysis modalities -- started off on PD and is currently on NxStage. 

When he first fell ill, the doctors gave him extremely high doses of steroids to fight the FSGS.  He also received steroids after his transplant.  Since then, he has had mobility issues.  However, within the past year, his mobility has decreased drastically.  We have seen many different doctors about this problem.  First they thought it might be a rhemotology issue, but all of the tests revealed that it was not that.  Then they speculated that it could be a muscle issue, but all of the neurological tests revealed that there were no problems.  After a thorough workup, every doctor is stumped.  They placed him on L-carnintine hoping that could do something.  It has not.  His is currently taking steroids for a short period of time.  The nephrologist thought that he could have sarcoidosis even though the tests really didn't provide much indication that that would be the diagnosis.  The steroids have not improved his mobility.  He was also placed on Vitamin D because his levels were so low, but now his calcium is increasing considerably.  So, we have concerns about his bone health -- mobility issues, vitamin D deficiency.  He takes his binders, etc.  Every month his labs turn out fine, which indicate that the dialysis is going well, but everyone's perplexed about why his mobility has declined.

I am extremely worried and distraught because no one has provided any kind of answer.  In the meantime, my husband has difficulty with very basic movements -- cannot walk more than a block.  It is not that he gets fatigued, but it becomes painful for him to walk.  Has anyone experienced these types of mobility issues or bone issues?  Any thoughts would be very much appreciated.

[IUNurse]

Has he ever tried physical or occupational therapy?  It doesn't always work, but might be worth a try.  I don't know what else to suggest!

[florence]

Yes, I forgot to mention that he also did intensive physical and occupational therapy.  No improvement.

[monrein]

I don't have any answers about this Florence but hopefully someone here will.  I do know that prednisone can have some nasty side effects involving the joints which can of course affect mobility.  I have known very young people who have had to have hip replacement surgeries (and also cataract surgeries) as a result of high-dose steroid treatment but it is mysterious that the doctors are unable to provide any clues about what might have caused this.  Any chance they're trying to cover their butts?  Rheumatoid arthritis can also cause severely painful joints but from what you say the docs have ruled that out.

I hope you get input from others here.

[IUNurse]

Well I figured they had, since it is a pretty basic thing.  I am sorry to say that I don't really have any more advice.  I don't know enough about steroid therapy-haven't dealt with it much.  I'm sorry to hear of how much he is going through, and he is so young.  Will say a prayer for you.

[stauffenberg]

Your husband's doctors seem already to have ruled out the most likely causes of his symptoms.  All dialysis patients, even those with adequate lab results, will suffer some degree of osteoporosis, but that is not likely to be the cause of limited mobility until it leads to fractures.  The most probable causes not yet ruled out are 1) electrolyte disturbances leading to the muscles not having the necessary minerals (calcium, potassium, and magnesium) for their nerves to function properly, thus weakening them, or 2) the lack of skeletal muscle mass usually observed in long-term renal patients.

[lola]

After Otto had his 1st transplant he had HORRIBLE pain in his legs, sometimes it hurt just to get out of bed, well they found that his hip joints were bad because of the high dose of prednisone so less then a year after his transplant he had to have both hips replaced. I feel for you because it's hard watching someone in pain. Otto was only 23 when he had his hips done.

[cris]

My Mother had almost the same problem, she had bone scan which revealed a lot. She was advised to see an orthopedic doctor, was given braces/supports/binders, which up to now she wears the back brace but can move and walk a lot better. Her labs are always normal. Your husband is young, Mom is 78 yrs. We noticed that with her Vit.B-1,she's more mobile. Hope this helps.

[Deanne]

I have FSGS, pre-dialysis at 25% function. I was on a heavy dose of prednisone for six months several years ago and I think it caused some mobility problems, too. Nothing near to the extent of your husband's problem though. I'm no longer able to fully bend my knees, I feel off-balance on stairs, and I don't even try to do things like run or jog because I feel off balance, like my legs just don't move right anymore. Sometimes I have a lot of pain in my knees for no reason and just for a few minutes at a time. I am able to walk long distances comfortably. I had a high degree of muscle-wasting / joint problems while I was on prednisone.

[florence]

Thanks everyone for your thoughts.  I think our next step is to see a bone specialist.  It's so frustrating when the doctors have no clue what is going on.  We have seen so many doctors.  I am tired of dealing with their egos.  We always meet them for the first time and they give the impression that they know everything.  Then, we come to the same realization each time -- they have no clue what is going on.  I apologize for my cynicism, but it has been very frustrating lately.  I have given up speaking with people about it because they reply, "But your husband is so young."  No s***! 

[Marley]

hi Florence 

I don't have any answers for eiether but wanted to give my support and a cyber hug.  I've been taking prednisone over 12 years now and am stuck with taking it.  One of the "side effects" I have is steroid dependency and when surgical complications came up two years ago, and with my doctors' permission (the surgeon) I tapered down and off the prednisone so I would heal better.  Not three months later I felt like I was slowly dying, lost my appetite, had extreme fatique and very low blood pressure.  I was going to ER once a month to get re-hydrated because I was also vomiting.  (also had an ileostomy at the time, which can be dehydrating if I didn't drink enough water)  I've noticed my balance has gotten worse lately and wondered WHY.  I'll be watching this post and please let me know when you two get some answers.  I'm hoping it's soon!!  Been there and done that!!!  It's so frustrating waiting and wondering, not to mention so worrying too.     

Peace

Marley
 

[rose1999]

Florence I've held off posting because this sounds stupid, but I've decided to tell you anyway!  My dog (and I fully appreciate she isn't human) has been on Prednisolone (I think you call it Prednisone?) for over a year now. She was on a high dose and was improving (she has insulinoma and together with a special diet it controls her seizures) when relatively suddenly she began to struggle to get up stairs, she could no longer climb (never mind jump) onto the sofa, struggled even to get out of her basket etc.  The vet said that sometimes these steroids cause small deposits on the bones and joints, she cut Molly's tablets by half and she is now back to her old self.  I just read that your husband is on steroids and I did wonder if they were having the effect they did on Molly.  If you think this is a daft thing to suggest then I apologise - just ignore me, I'm used to that 
Wishing you both all the best. 

[lruffner]

Florence-

I don't know if this is related, but I also have FSGS and have a horrible time getting around and wish that I could walk a whole block! I am not on steroids for my FSGS, or any other immunosuppressive drug, but I am pretty much disabled from it. Because I have a bad back as well, I saw every neurosurgeon, neurologist, and spine surgeon in the area, they just passed it off as degenerative disc disease and arthritis....at age 34. I just pretty much had to live with it for years, until I was finally diagnosed with peripheral artery disease in the lower extremities, by complete accident. Not one of those other docs thought to check the blood flow. I have severe, disabling pain in my legs and hips, and have had to literally get flat on the ground in a parking lot just to be able to get to my car. I also go numb from the waist down to my toes sometimes.

Due to this, I struggle just getting around my house some days, let alone going shopping or doing any fun activities that require walking. It has completely changed my life for the worse. If they go in to intervene by putting stents in my legs, there is a high probability that I will lose part of my limbs...so I just leave it alone. Kidney disease in general makes for a much higher risk of circulatory problems and cardiovascular, because it makes the blood stickier, as well as having high lipid problems due to the FSGS.

I do not believe that my hip problem is due to the PAD, but I can't get anyone to do anything other than an xray, which shows normal. I guess I have too many other problems to worry with. Anyway, my hips almost feel like the ball is going to come out of the socket and I can actually feel it rubbing the surrounding muscles/ tissue.

This may not be your husband's issue, but a simple ultrasoud w/ doppler of his legs could easily rule it out.

[flip]

Hey, Lee..good to see you back around

[lruffner]

Hey, Lee..good to see you back around

Hey Phil, Thanks! How have you been doing? Anything new with you? Still thinking of coming back this way?

I got kind of hooked on the Scrabble Blast game on kidneyfun.net, but I had to quit for a bit due to obsessive behavior..lol. I can play for hours and then I forget that I really should be asleep! 

I thought I would come back on here to get some more info. about my fun little kidney funk...trying to find out why my kidney function/ creatinine keeps getting worse, when my protein spill does not. Of course I have no professional that seems to be able to answer this, so I thought I might see if anyone else is in the same boat. I went to my first 'dialysis/ transplant' orientation at Fresenius (sp?) in Lexington. It was very child-like for me, but I am sure it was very helpful for the older folks who don't get online.

[kevno]

As your Husband had his parathyroid test. If the parathyroid are over active, that can cause like in me weak bones muscle wasting. Plus reduce mobility. It is only a simple blood test, just to rule that out. 

[LightLizard]

prednisone is evil and will cause long term damage to the joints. i was on it for awhile a few years ago and still have problems that i relate to it, even though i've been off it for almost two years.
would your husband be open to trying tai chi? i have found that even with my debilitated condition that tai chi does make me feel better and helps to gently increase my mobility and my stamina.
qigong ('chee-gong') is similar to tai chi, but it is much simpler to learn and incorporates gentle movement with breathing, either could be helpful in his case.