Atemara

[Nunyabus]

Hello,

My mother was diagnosed with Scleroderma over a year ago, however, no one explained what it was or gave her good information to slow the disease down. Recently she was having issues with double vision and walking to the left along with head aches and we went to the hospital to be checked. When a few doctors mentioned she had it I began to research what it was and believe that is what is causing the issues she has been having. She sees a lung specialist currently and has been giving herself a shot of Atemara weekly for about six months. I have recently learned this is very new and not approved by FDA yet. I am wondering if anyone is familiar with this drug or had any experience with it. Her lungs are declining and I am extremely concerned. Thank you so much,

Trina

[OldTed60]

Sorry for this information you’ve learned about your mum. I tried to look up Atemara but couldn’t find anything - is she prescribed it?

Who diagnosed her? Are you in UK or elsewhere (ref to FDA suggests US) and which kind of a specialist diagnosed and sees her? There are many types of Scleroderma so a lot will depend on what type and who this is managed by.

Take care

OldTed60

[Nunyabus in reply to OldTed60]

Thank you, and thank you for your reply. She was diagnosed in July 2021 by a rheumatologist who also prescribed her Actemra, I actually had that spelled wrong, sorry about that! We are in the US and it has not been approved by the FDA as of yet. I had to get on her "Mychart" and it only says "Scleroderma", but from what I have researched on my own and with the issues she is having I am thinking it is the "Systemic Scleroderma" because she doesn't have a lot going on with the skin but has gerd issues and lung issues and the shrinking of the mouth, she has had the Reynauds for 4 or 5 years now.

[OldTed60 in reply to Nunyabus]

No problem re the spelling - stressful times, new condition and drugs to get your head around. If you’re in US and not FDA approved then how is your mother getting this drug I wonder? Maybe other US members will reply more helpfully meanwhile although I guess most people here are U.K based and different organisation approves our meds and we often have different brand names.

If no one replies more helpfully than I can, then perhaps join a US based Scleroderma patient forum such as the one on Inspire (I think) or a US Fb group? As Scleroderma is a rare disease the related community in U.K is small too whereas I imagine that on US/ international groups there will be many more knowledgeable replies.

I do really sympathise though it must have been a shock to discover your mum’s diagnosis. I wish you all the best with your attempts to find her the right care and support she needs X

[Nunyabus]

Thank you so much! It seems lately there are a lot of medications being given that are not yet approved by the FDA?...I thank you for your good wishes! And yes, I am at a loss but the FB suggestion may be good. I just found this "HealthUnlocked" the other day and it has been of great help. I wish you all the best!! Thanks again.

[Alice1956]

I have diffuse systemic sclerosis which affects my lungs. My lung fibrosis is moderate/severe. I have previously tried many different medications eg Cyclophosphamide infusions, Mycophenolate Mofetil and Nintedanib but my fibrosis continues to spread. In March this year I began Actemra (Tocilizumab) injections. I think I am seeing some improvement eg more energy, better results in my ability to walk in my 6 minute walk test. I haven't had full lung function tests done recently because of lung infection. However my peak flow was measured and again showed improvement. I am hopeful that these injections are working well for me. I wish your Mother all the best for good results with her injections. X

[Nunyabus in reply to Alice1956]

Thank you for replying, prayers and well wishes for you. It is so terrible not to be able to breath! I am so sorry you are dealing with this and I hope it only gets better from here!!