Aa
Rebif and how long can be treated with it?
Hello, All.
I have a friend with Multiple sclerosis for more then 15 year. He is 41 years old. He started with the Rebif in the same period and up to now he is "OK".
These days he went to his doctor, did a MRI and the results were very good , telling that the situation is almost same as it was that time.
The problem here is that his neurologist wants to stop with Rebif, saying that he ca not take this medicine so long period. We are concern that , if this long long period he has not any worsening of his illness why should he stop now. Question here is : Can he take Rebif for 20, 30 ... years if the illness lesions are stagnating. Thanks in advance
I have a friend with Multiple sclerosis for more then 15 year. He is 41 years old. He started with the Rebif in the same period and up to now he is "OK".
These days he went to his doctor, did a MRI and the results were very good , telling that the situation is almost same as it was that time.
The problem here is that his neurologist wants to stop with Rebif, saying that he ca not take this medicine so long period. We are concern that , if this long long period he has not any worsening of his illness why should he stop now. Question here is : Can he take Rebif for 20, 30 ... years if the illness lesions are stagnating. Thanks in advance
Improvement does NOT mean that the drugs need to be stopped. MS drugs are taken whether someone gets better or not. He needs a different, better doctor.
Same here i live in Albania and there is few information and ms specialist.. Can you please tell me how your friend did after quitting???
My boyfriend has ms and has been using rebif for 6 years now. The doctor says that he needn't take it anymore because he has improved. I am very afraid that he wont be ok if he quit rebif.
Hi.I have a same problem.I used Rebif for 10 years and I didn't have any attack and new lesion on MRI .It exhuste me and I want to taper and stop to use it.I'm ready for gamble
Thanks, Wan68 I too hope some long time interferon users find this post, and respond. There are none on our forum currently that I'm aware of, but you never know who may see this one day.
They discovering existing meds to treat disease and conditions all the time, the one that comes to mind regarding MS is Lemtrada (search for alemtuzumab too), recent news says it's done well in trial when compared to Rebif - maybe ask the doc about the cellcept in this context. Maybe he's willing to elaborate.
Please keep us apprised, we are always looking forward to learning more and since I'm on interferon I'd like to hear from long time users too. Your a good friend to do digging for your buddy.
-Shell
They discovering existing meds to treat disease and conditions all the time, the one that comes to mind regarding MS is Lemtrada (search for alemtuzumab too), recent news says it's done well in trial when compared to Rebif - maybe ask the doc about the cellcept in this context. Maybe he's willing to elaborate.
Please keep us apprised, we are always looking forward to learning more and since I'm on interferon I'd like to hear from long time users too. Your a good friend to do digging for your buddy.
-Shell
CellCept is used for organ transplant rejection.
It's used to fight infection
I can't imagine why they would want to put your friend on it and I would certainly baulk at it until someone gave me a darn good reason.
It's used to fight infection
I can't imagine why they would want to put your friend on it and I would certainly baulk at it until someone gave me a darn good reason.
Thanks a lot, Sllowe ( and rest of you)
It is a good advise to ask the doctor what are the consequences ( if any) and what is the reason to discontinuation of Rebif. I think that the doctor is general neuro, because in Macedonia ther is no MS specialists. in discussion with my friend , he told me that doctor wants to him on CELL CEPT (medicament for lupus and ...). I could not find the connection why to go to CELLCEPT ?!?
I am afraid that the government ( as we have some medicament on "positive list" means prescription and covering by the state health insurance) wants to downsize the expenses of the budget from the health insurance part.
Any way I am asking anybody who has been on Rebif 15 years or even more their experience, conditions and advise from their own doctors.Also I am asking MS specialist who will read this to give me advice. If I can say you people in USA are lucky that you have opportunity to share, talk and even been advised on every aspects and any health problems that you may have.
It is a good advise to ask the doctor what are the consequences ( if any) and what is the reason to discontinuation of Rebif. I think that the doctor is general neuro, because in Macedonia ther is no MS specialists. in discussion with my friend , he told me that doctor wants to him on CELL CEPT (medicament for lupus and ...). I could not find the connection why to go to CELLCEPT ?!?
I am afraid that the government ( as we have some medicament on "positive list" means prescription and covering by the state health insurance) wants to downsize the expenses of the budget from the health insurance part.
Any way I am asking anybody who has been on Rebif 15 years or even more their experience, conditions and advise from their own doctors.Also I am asking MS specialist who will read this to give me advice. If I can say you people in USA are lucky that you have opportunity to share, talk and even been advised on every aspects and any health problems that you may have.
I agree, I think my question would be to the doc, as in what's the harm in continuing it if it works!
Disregard my thoughts on 2002...Did not realize you were not in the states... Thanks TLC31
Rebif was approved in Europe in 1998, so there aren't too many people who have been on it longer than your friend. He is a pioneer of sorts. The medicine might be less effective over time, but if there's no sign of that yet then why not keep going with it? Of course keep watching carefully. The neurologist probably doesn't have a lot of data to back up his opinion, so its worth challenging.
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
I'm so glad your friend is ok :) I'm assuming he was in the trial phases of rebif in order to be on it for that long. I do believe it was only made available outside of that in 2002. Or, he was on another interferon.
Regardless, this is an excellent question! And, one I've heard before from two friends I have w/MS as well - one on betaseron, the other on rebif for about 8 years. Their MRIs show no new lesion load, and while they have symptoms, they have not progressed into SPMS, or PPMS.
So, what to do? It's a gamble I feel. The interferon may have successfully kept them virtually relapse-free (all MSers are different, and this one did it's magic it seems), kept disease progression from furthering, etc. And, now a doc says not to take it this long.
In order to make a more informed decision, your thoughts are exactly spot on btw (no worsening - so why stop?) more information is needed...
My question would be to the doc.... What exactly are the long-terms to interferon use in general that is leading to this decision? And, what are the potential disadvantages of going off this therapy since it's working?
Question for you - does your friend see an MS specialist? Or general neuro?
Thank you for joining us,
-shell