Update and side effects
 

Hi all!

I just wanted to give you all an update on my treatment and get your feedback on how it's going. I feel like it's going pretty well so far.

I was diagnosed with Very Severe AA and started Horse ATG around September 6th. I have continued with cyclosporin and as of today my WBC is 2.7, RBC is 7.6 and plates are 37k. I had no neutrophils prior to treatment and now they are at 1400. My numbers seem to be going in the right direction and my transfusions are becoming less frequent. Plates every week and a half and red blood every two weeks or so. I don't have a sibling BM match so I am praying this does the trick.

I do have some side effects I was wondering if anyone could shed some light on. I was very active prior to this (ran a 5k two weeks before I was diagnosed) and am having some joint discomfort. Knees and hips mostly. I have read HTG can be a culprit but wanted to see if anyone had any personal examples or suggestions. I want to start getting more active (slowly of course) but I feel like my grandpa!

God bless you all and thanks for the support!

Hi,

I am also a runner. I am currently tapering cyclosporine and get terrible arthritis in my knees every time I lower the dosage. It lasts about a week or two and then goes away. When it's happening however, I feel like I'll never be able to walk normally again, let alone run! Perhaps your pain is also related to the cyclosporine??? Yoga seems to help me when I have these flare-ups.

If your pain is persistent and severe, you may want to consult your doctor. Prednisone has an infrequent but terrible side effect for some people in that it can cause bone death in the joints. Hopefully, this is not the case for you.

Thanks... I'll have to follow up with my doc for sure.

Tapering
 

Aloha!

When I was tapering the cyclo after my first treatment, I had stiff joints first thing every morning. I asked the hematologist and he said that it is not unusual to experience symptoms of rheumatoid arthritis when tapering. Ra is another auto-immune disease, as I understand it. When I stopped tapering, the stiffness went away.

You did not mention if you are taking Neupogen. That can also cause joint pain.

HTH

My doc thinks the joint pain and stiffness is from the cyclo. I did take neupogen but have been off it for about a month or so. I get the headaches too from cyclo. I'm not tapering off yet so this is just something I'll deal with. No biggie really in the BIG scheme of things! :) Thanks for the reply.