Actemra (Tocilizumab) questions

[dwsurquhart]

Hello all other Tocilizumab patients.

A coupe of question for you all. Have you noticed since being on Tocilizumab that your appetite has diminished yet you are gaining weight? Have you noticed that your hair is growing in finer or you are losing hair? That your finger and toe nails seem to be growing at a extraordinary quick pace? Have you noticed that muscles tone and strength has diminished as well.

I have been noticing these things since about 2 months after starting this medicine.

I lost 52 pounds of muscle mass two years ago in which my rheumatologist told me I had cancer. Turns out she was not correct, unless I fought it off without meds? I have been going to the gym 3-5 days a week for 11 months to try and gain back some of the strength and size I had lost. I am unable as it appears to grow any of my leg muscles back. My hair is also thinning (used to be like a pelt. Rain water never actually got to my scalp. Now it does in short order. My finger and toe nails now need to be cut almost weekly as they grow so fast. Maybe I just think it is fast because i did not have to cut them for a year.

Scott

[ruth_p]

I definitely haven't lost my appetite and want to eat everything! I had put on weight while on it but that could also have been because I'm happy in my job and my RA was back under control. I've been losing weight on weight watchers. My hair comes out loads but I don't know if that's specifically due to the tocilizumab or the combination of toc, mtx and anti depressants, plus hair dye. I haven't noticed nails growing faster either. I do bruise much more easily and I have allergies (they started with my first biologic). Not sure I've been much help. With the muscle building I don't seem to be having problems with that either.

[Biofreak]

Hi Scott

I was on Tocilizumab for 16 weeks this year and it really didn't suit me. If I remember rightly, weight gain and higher cholesterol are listed as possible side effects, although I didn't experience those effects personally. 2 weeks after starting the tocilizumab,however I started with muscle pains everywhere, arms, legs, neck etc. I linked it to the tocilizumab because I'd never had muscle problems before only joints. The RA nurse thought it was fibromyalgia but I wasn't convinced. I persevered for 16 weeks because I wanted to give it a proper chance but I was in pain all the time even though my bloods were fine. My muscles started to waste because I wasnt using them because of the pain. The Ra doc agreed for me to stop the toc and within 2 weeks the muscle pain reduced. My hair has always been thin and I didnt notice any changes in nail growth. Best wishes to you.

[Marycullen]

I tried Actemra 2 Different times and both time my blood pressure went up and I

had to get on medicine. As soon as I got off the

actemra my blood pressure went back to normal

Not the right medicine for me