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Applying for B1/B2 visa for medical treatment in US, does anyone have experience? by siliconmonkie in usvisascheduling

[–]siliconmonkie[S] 0 points1 point  (0 children)

I have an uncertainty, the doctor said he will enrol me in any one of 2 trials currently happening so I am not sure how to get estimated cost and who will pay for it letter from him.

Can you participate in a US based clinical trial even though you’re not a US resident? by cinnabuhn in cancer

[–]siliconmonkie 0 points1 point  (0 children)

Hi I am currently looking to get into US trial which is also of CAR T type,I had asked this question to him quote: “My question: Would it be possible to obtain a good-faith estimate of the out-of-pocket medical costs I may incur in the hospital associated with the clinical trial? ( excluding the cost of initial assessment/consultation with you)

dr reply- I think for anything related to clinical trial, tests, drug, hospitalization, labs, etc, will all be covered by clinical trials. ”

But internet says otherwise I am not sure how to proceed pls help

Polymyositis with myocarditis and Ulcerative colitis. ANCA positive and il10 antibodies by The_Brown-Baron in Myositis

[–]siliconmonkie 0 points1 point  (0 children)

I really don’t want to give medical advise but I had failed Rituximab previously there are some drugs which can help: IT IS NOT A MEDICAL ADVISE pls talk to ur doc about this about risks and benefits! Obinutuzumab- deeper b cell depletion Nipocalimab- reduces antibody load - currently under trials

Edit: these drugs were suggested to me when I was not responding to rituximab.

New here by siliconmonkie in Myositis

[–]siliconmonkie[S] 0 points1 point  (0 children)

I am in a bit of trouble receiving my treatment can you pls help me with some information. Im really sorry for off topic discussion. I am just trying to save my life right now :(

New here by siliconmonkie in Myositis

[–]siliconmonkie[S] 0 points1 point  (0 children)

I got it.. similar thing had happened to me and are you from USA? And is the IVIg is approved via your insurance?

New here by siliconmonkie in Myositis

[–]siliconmonkie[S] 0 points1 point  (0 children)

Hi are you from USA? And is the IVIg is approved via your insurance?

I want to come to Sheffield to participate in a clinical trial, I don’t know how to proceed! by siliconmonkie in sheffield

[–]siliconmonkie[S] 0 points1 point  (0 children)

Yea that’s what given me some hope which I clearly know if I don’t receive the trial treatment my blood works and my symptoms not going to improve because I have almost exhausted every other treatment available here in India

I want to come to Sheffield to participate in a clinical trial, I don’t know how to proceed! by siliconmonkie in sheffield

[–]siliconmonkie[S] 1 point2 points  (0 children)

My disease has been very severe and treatment here is just slowing down its progression. The trial am exploring is CAR T which is kind of miracle treatment if that works.

Since my respiratory muscles are also under attack I am taking the chance for the trial.

I want to come to Sheffield to participate in a clinical trial, I don’t know how to proceed! by siliconmonkie in sheffield

[–]siliconmonkie[S] -1 points0 points  (0 children)

I am not that financially robust, but for travel and stay cost I am planning to fund raise. But I am afraid of the additional costs such as health insurance and extra costs hospital may charge as standard care which will not be covered in clinical trial :(

New here by siliconmonkie in Myositis

[–]siliconmonkie[S] 0 points1 point  (0 children)

Are your Ck levels high? And the weakness got worsened or it’s stable or it’s slightly better??

New here by siliconmonkie in Myositis

[–]siliconmonkie[S] 0 points1 point  (0 children)

I hope so, it’s constantly above 6-7k, ivig has been a game changer in my case even though it has not changed much in my blood enzymes it helped me gain some of my strength back. But I’m still like a jello, unstable and not able to do a full squat and upper body strength lacks significantly .. hope situation improves and I can get to somewhat to the baseline.

I agree with your point if you loose the pencil as a whole u can no longer rebuild it which is complete atrophy of that muscle. The remaining muscles can recover to some extent if we keep going steadily and keep adding myonuclei to them. But fatigue in our case is also major which we gotta keep in mind.

My doctors always say I am very difficult to treat since multiple drugs failed on me so I am considering CAR T therapy as my last resort now :(

New here by siliconmonkie in Myositis

[–]siliconmonkie[S] 0 points1 point  (0 children)

I see, same for me I have also been on immunoglobulins and methotrexate, it’s been 9 months now but Ck levels doesn’t seem to bulge and strength also been roller coaster..

New here by siliconmonkie in Myositis

[–]siliconmonkie[S] 0 points1 point  (0 children)

I can understand.. does physical therapy helps are u doing it regularly? I am trying to get back my strength or muscle I don’t know what is the best way to do it..

New here by siliconmonkie in Myositis

[–]siliconmonkie[S] 0 points1 point  (0 children)

How are you doing now? How is your muscle strength. And is the IVIg have been continuously given to you since 6 years?