Muscle atrophy

[Il_Randyb]

Hey all hope you are all doing well

Quick update on me - doing well, still doing nightly pertineal dialysis but my numbers are looking good. Especially happy that my albium numbers are back in the normal range. Still working to get on the kidney transplant list but life if pretty good for me again.

Had cataract surgery a week and half ago on my left eye, now seeing 20/20 out of that eye Have the other eye done next week :-)

My issue I am focusing on now is the muscle atrophy that I am thinking is a result of the nine months of prednisone. Just wondering if anybody else has had similar issues. For me walking up stairs is difficult, I get still very easily from sitting to lying in bed, lots of aches and pains in my upper body, arms, elbows, shoulders and hands, and it is worse at night. Never had these issue before, have always been very fit until my diagnosis a year ago.

Anyway I am going to get evaluated and hopefully advice on rebuilding my muscles and how to deal with the arthritis like pain I am experiencing.

Hoping someone has some good advice for me - ok so any advice will do :-)


Take care all


Randy

[Dirty Don]

Hey Randy, sounds like your life is better! Very cool. As for the pred & muscle loss...yeah, sure, it does. And, it's more difficult to recover the losses now too. It's taken me nearly 2 years to get back to where I was pre dx...and that's not really back to then, I just am willing to accept what I've regained so far. It's ongoing from here on out methinks. As for the upper body pains, that's so much like a flare, but are there any pains anywhere else? Or is it arthritic pain? Hmmmm. What dose pred are you on? Whatever you do to start rebuilding, take it slow, work on balance and stretching first, then move on. Best to you.

[Alysia]

Hi Randy.
I am glad that things are getting better to you
considering the pains and weakness, it is a question, if they are because of the meds or an indication to wg-activity. please update us what your doc will say about it. good luck.

[Il_Randyb]

Hi Randy.
I am glad that things are getting better to you
considering the pains and weakness, it is a question, if they are because of the meds or an indication to wg-activity. please update us what your doc will say about it. good luck.

Thanks all. I'm starting to think it is a flare up :-(. Off all meds right now except an antibiotic for latent TB. I was remembering today how stiff and sore I felt last year at this time when I was first diagnosed. Time to talk to my doc.

[greenjeep]

Pred makes the muscles in my legs atrophy quickly. On higher doses, stairs were a challenge. I'm now on 10mg but my legs are still the last thing to recover.


Sent from my iPhone while driving on the freeway.

[Dirty Don]

my legs are still the last thing to recover.

Mine too...for the first year or 2, I couldn't stand straight up from a crouched position without help from a person or table or somesuch...a few months ago I was washing the car outside, not paying attention to my position...and I stood up on my own from a crouch without assistance or balance of any sort...I was amazed...finally, I could stand up on my own without assistance!

[Debbie C]

I'm finally going to have that bone denisity test done Thurs. My legs have been feeling very weak lately. I was fine when I was doing all that walking while in Fl. but now I don't feel like I have any strength.
Randy it sounds like u may need to back on pred or something again. I do hope u are able to get on the transplant list soon.

[Il_Randyb]

I'm finally going to have that bone denisity test done Thurs. My legs have been feeling very weak lately. I was fine when I was doing all that walking while in Fl. but now I don't feel like I have any strength.
Randy it sounds like u may need to back on pred or something again. I do hope u are able to get on the transplant list soon.

Debra, hoping you feel better soon. I've actually taken a positive turn. I think a cold I had was really dragging me down. I diagnosed my strength problems and they seem to be heavily related to two injuries I had. PT and my leg strength is improving.

Next up is to diagnose arthritis I seem to have developed

hoping to get back in the gym this weekend

btw I am trying to stay away from that evil prednisone.

Take care

Randy

[Il_Randyb]

Hey all thought I'd post and update

Start of the year I started having some issue and it has taken time to sort them all out. It was starting to look like my Wegs was back but it would seem that is not the case. I went off all wegs related meds in December.

I was having nose bleed issues - which the ENT thinks was unrelated and due mostly to scaring that scared the sides of my nose together - he separated them in his office.

I had a lot of weakness in my legs - I had two serious injuries and the weakness was a result of those - 1) tore my achilles and sprang the knee on my other leg. So some physical therapy and things are coming along nicely now.

I also developed lots of aches in my upper body, arms and hands. - Osteoarthritis is the diagnosis - I think the lack of use really made it worse. So I added upper body to my workout routine last night and I feel a ton better already. Note I still am stiff and achy, just not as stiff or achy and I think with proper exercise and stretching I can mitigate the pain for now.

The good news is I am now listed on the kidney transplant list - I need to finish my TB meds first but I can gain time on the list till my meds are finished in September - again still hopeful to get a live donation from one of my two sisters.

Oh I forgot to say they ran numerous blood tests on me, all of which were negative including Lupus, Rheumatoid arthritis, Wegners (ANCA), and a few others I believe.


Thats about it for now


Randy