Rebif long term side effects

Common Questions and Answers about Rebif long term side effects


Would decreasing to 22mcg be an option? A fellow Rebif user on another MS site who never had any side effects sudenly had terrible reactions post injection. He reported no further side effects after dropping the dose in half. This is just a temporary solution till he gets in to see his Neuro in a couple of weeks. I manage my side effects OK with extra strength Tylenol, which you've already stated don't cut it for you.
TO TLYNN & OTHERS while reading the posts i see that you are on rebif, i am also on this for the last 3months since been diagnosed & was just wondering how you or others find this treatment, each time i take it i wake up shivering, along with some other problems, i just pray that it is working & the side effects are worth it, also i plan to try for a baby at the end of the year if my neuro says its ok & im not sure if i will need to come of this in advance, or if i can wait unti
Who was asking about long term safety of interferon? This is the one of the links (still looking for the other)I couldn't find when you asked. 21 and 16 year follow up studies - along w/their limitations, i.e., FDA blocks in place regarding contacting study patients... Among the headlines of documented results you'll find from the above link.
I chose Copaxone after looking at the potential side effects and the monitoring for those side effects. Be sure to look closely at the tiny print of the literature that comes with the medicines' packages that the doc gave you or go online to do so. One of the problems with Rebif was that you needed periodic monitoring of your liver enzymes, etc. With Copaxone, you don't--this is a big issue with me because I live two hours away from my doctor.
I missed Avonex for seven weeks in late 2011. I had rougher-than-usual side effects for a couple shots after I restarted, side effects more in line with when I started originally. I did not titrate either time. I noted no progression or exacerbation of MS during the hiatus (although I was on Gilenya for 19 days in that stretch). I would expect your hiatus to be similarly uneventful.
I'm leaning towards copaxone because of the lesser strong side effects but would love input . I am a strong willed, headstrong, slightly OCD chick so asking for help from my great family & friends is hard but I'll suck it up because this damn sure isn't going to take me out. Started neurotin today so hopefully this attack will go down soon and I'll be back to as normal is I'm going to get. Any advice for a newby would be great.
My neurologist was not aware of this (our family doesn't talk much.) Also, he's all ready told me to step my Rebif-dosage down to 22mcg; but the side effects seem only to be worsening. Thank you.
I think I read that Copaxone takes about six months to reach maximum effectiveness. I can't find what I saw before, but I did find a couple things that say 6-9 months. For example, "Some doctors are reluctant to start people with more aggressive RRMS on Copaxone, as it seems to take six to nine months to reach full effectiveness." from I think the interferons are supposed to take somewhat less time to full effectiveness.
What I want to know is what are the long term side effects of having used this medication for so long? What has it done to my body?
What is the risk of no treatment at all? What are the side effects? I am just doing the research now as I have plenty of time to decide, but my work just went to a CDHP/HSP with about a $10,000 dollar deductible. Needless to say I really don't have that type of money, so my husband and I will be going on his insurance and I will no longer be double covered. So financially I am kind of in trouble. I would like to know if these treatments are worth it.
Its efficacy and safety profile is as good as the other DMDs that have been with us for the longer term, including Rebif. The side effects are usually minimal. There are people here and elsewhere that can help you learn the best ways to mitigate the side effects. If it proves intolerable or ineffective for you, you can always switch. Ask questions anytime!
If you are using the steroids intermittently then you should not have a problem with the long term side effects. However, if you are not on one of the other MS agents, it may be more beneficial in the long term. These medications (Avonex, Betseron, Rebif, and Copaxone) are designed to slow the prgoression of the disease. Good luck.
Toasted = towards!
Cohen, MD, Professor, Davee Department of Neurology and Clinical Neurosciences at Northwestern University’s Feinberg School of Medicine, and incoming Chair of the National MS Society’s National Medical Advisory Committee. “As with any new therapy, the long-term safety of Aubagio will need to be carefully monitored,” he added. Dr. Timothy Coetzee, Chief Research Officer at the National MS Society agreed.
Like MS varies from person to person, I think neurologists vary, as well. I think this applies in how they diagnose MS (I had one neuro tell me it was a clinically isolated syndrome, and another tell me it was definite MS according to the criteria), and in what medicine they prescribe. So, I would do your own research, and then ask your doctor as many questions as you need. I would start by asking why he only recommends either Rebif or Betaseron, and not Copaxone or Avonex.
As far as I am aware no-one so far has had any adverse effects butit is obviously the longer term side effects that are less known as it is such a new drug. So my advice is go with what feels right and listen to your own instinct.
Avonex is a far lower dose per week, and since you have already acheived the immune response with the Rebif would kick in quickly. But, if you are very sensitive to the side effects of the Rebif, you might have them also with the Avonex. Now this is based on what I have read and NOT on experience. I am actually pretty ignorant of how these meds react in different people. But, these are my thought anyway.
Side effects can vary greatly from one person to another, and you may not feel any side effects regardless of the DMD. If you find side effects intolerable, you can switch drugs. Aside from the injectibles, you may want to consider the three oral DMDs, although they also can have side effects (Gilenya works well for many, for example, but I had to stop after 19 days).
In the end - I don't feel you can go wrong with an of them. So, be sure to include long-term compliance in your decision making. Those avonvex users on the forum have not mentioned much problem w/the intra-m avonex injection- from what I undestand the needle is super thin too - which is helpful. Wishing you well w/your decision - oh, and one more thing - you can always switch, if you find one is not agreeing well with you - something else I never thought of when I started.
Approved Long-Term Treatments The first three long-term MS treatments to be approved were dubbed the "A-B-C" drugs because of their brand names: Avonex®, Betaseron®, and Copaxone®. These are interferon beta-1a, interferon beta-1b, and glatiramer acetate, respectively. All were approved by the Food and Drug Administration (FDA) for treating RRMS. These drugs have been approved by the Food and Drug Administration (FDA) for treating either RRMS or all relapsing forms of MS.
I feel that talking to someone that has personal experience with the drugs, is the best way to really learn about the side-effects and their efficacy-long term. Of course, everyone reacts to different drugs in different ways and to varying degrees. Lump the information together, to get a general idea of how they may work for you. For those of you on Interferons, make sure that your doctor is doing follow up blood work, at least every 6 months to check how your liver is handling the drug.
The no-guarantee is the difficult part for me, combined with the long-term unknown effects on the body with interferon use. We discussed Copaxone as well, which sounded to me that it had repairing possibilities. The downside only seemed to be daily injections. I was surprised to learn that it also alleviated the risk of developing antibodies, and had less side affects. In the end, I left it up to the Dr., since, well, he is the Dr. He chose Rebif.
Probably effective. Side effects manageable. Hate needles, but the Gilenya was not tolerable and possibly dangerous for me. Special diet?: I do take 2000 IU Vit. D3 each day. Your EDSS (if you ok sharing): If I've had it tested, I don't know, but probably between 0 and 2.
I certainly don't know yet about long term effects, but will keeping having eye and liver tests. Taking daily oral pills has been a welcome relief. New Mri in 3-6months for a new check. I sat in a private exam room for 6hours with blood pressure check every hour or so. The warning label states some people may have slow or rapid heart rate in the 1st six hours. Of course every med has potential warnings and they don't happen to everyone. I did not have any issues at all.
I discussed all of this with my caseworker at Serono, and she seemed skeptical that I would be successful on Rebif in the long term, given this situation so early in my treatment. I had only been on it for 8 weeks and was only at the low dose (22mcg); never even made it up to 44mcg which is when more patients will typically develop the liver enzyme issue.
It is an immunosuppresant, meaning you might be more susceptible to germs that come your way. It hasn't been in use long enough to know the long term side effects. Copaxone is my drug, they have just passed 18 years of use, and the statistics are very good in keeping people ambulatory without the need for a cane, walker or wheelchair. If copaxone stops working for me, I am glad there are other drugs to try. All of these drugs offer you a chance to do something to protect your future.
My ms nurse tells me that Rebif is the 'gold standard' but I'm put off by the potential side effects. In the years before your diagnosis what kind of relapses did you have? I can look back and remember a few instances of a dead leg or a numb/tingly hand but it was never anything I found bad enough to worry about. It's certainly a weird condition to have because of all the uncertainty, isn't it?!
I have a follow up with him in a couple weeks to give me time to digest this info as well as consider monthly infusions of Tysabri. With the side effects of Tysabri being similar to the side effects of Rebif I am concerned I will relive the mental and physical hell I endured in 2009 on the Rebif.
At my last visit my neuro advised that if it turns out I can stay on Rebif (still don't know about the liver enzymes being a long term problem), I can join a study on combining Rebif and teriflunomide, an anti-inflammatory med. I think I may do that. As my MS specialist is also a researcher, he provides information on studies to patients. I don't think it would have occurred to me to even ask about it, at least at the start of my disease.
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