No doubt most of you have heard the news of the study published in JAMA that indicates that interferons (Betaseron, Rebif and Avonex) do not delay progression to disability for people with multiple sclerosis (MS).
For those of you who haven't read the study, here is the link to the original paper in JAMA (full-text version): Association Between Use of Interferon Beta and Progression of Disability in Patients with Relapsing-Remitting Multiple Sclerosis.
If you would like to see how mainstream media reports the study results, check out the coverage by The New York Times, TIME and CBS News. Also worth a look is the summary by the National Multiple Sclerosis Society: Study Suggests That Interferons Did Not Reduce MS Progression.
Rather than rehash the results here, I'll let you read them for yourself from your chosen source. I see some weaknesses in the study and places where the results are may not be so black and white, but I'll reserve those for a different time.
What I am most interested is how those of you on interferons are coping with this news. I found the news upsetting, to say the least, but I take Copaxone and don't have to grapple with any interferon-related decision personally. My first thoughts were of the emotions of all of the people who have been injecting themselves for years with these drugs. Did you feel scared? Angry? Disappointed? Skeptical about the study results and confident that the meds are helping you?
Then I wondered what everyone currently taking interferons would actually do. I imagine that most people will continue taking them for the time being, but plan a visit with their neurologists to discuss options. However, there are undoubtedly some people who will never pick up a syringe containing these drugs again, despite urgings in the press to continue taking interferon-based therapies and emphasizing the fact that the study did show that the drugs were shown to prevent relapses.
We all know preventing relapses is a good thing. Relapses are terrible. But is preventing them enough motivation for the people who experience interferon side effects of flu-like symptoms? What about the people who hate injecting themselves so much that the only thing that keeps them doing it is the vision of themselves in a wheelchair?
That is why I really want to hear from all of you who are taking Avonex, Rebif or Betaseron. What are you feeling? What are you doing? How are the people around you reacting? What does your neurologist say about the study? Please share your story in the comments section.
i use avonex and have no side effects but prob will stop the injections since the shots are not that good for our bodies!! thx for the article.
I’ve been taking Avonex since 1998 and am very disappointed to read all the articles about inteferon beta drugs. I really hope that the results can be clarified and that injecting myself all these years wasn’t for nothing. I won’t stop for now but will definitely discuss with my neurologist next visit.
I know you asked for folks on Avonex, Rebif or Betaseron, and not people like myself, whose on Copaxone, like yourself, but I think if I were using Avonex, Rebif or Betaseron, I’d still take heart from the fact the drugs may have reduced relapses. I know that every relapse I’ve had left something behind after it was over that has never gone away. So the fewer the better IMO. I had three in 12 months before I started injecting, but only one since in 6 years and none in 4 years. Hopefully Avonex, Rebif or Betaseron users have had similar results.
I switched to betaseron in april and I can’t tolerate it. Flulike symptoms every time. I had decided to return to copaxone asap and this study only cemented the decision.
Well I have been having Betaferon (Aussie name) since diagnosis almost 11 years ago and I still walk without assistance and work part-time. I have had progression but I guess it has been pretty slow. I don’t really know if it is the Betaferon or the low saturated fat diet or a combination of both. I might consider changing and my neuro has given me the option of choosing to go onto Gilenya, but the thing is I have seen many more studies that say that Betaferon is effective, so until more studies say the same story, I am reserving my judgement.
Avonex certainly helped me.
If I got frustrated and quit for a few weeks,
I would see how much it was helping and start again.
Then I started getting sicker with the shots and quit again
This time I felt good.
Thankfully I was in remission
Now I am stable for the most part
Obviously I still deal with symptoms everyday,
but I have learned to cope.
I started on Avonex when I was first diagnosed in 2006, hated the flu-like side effects, and an MRI in 2007 showed new lesions. In early 2008, I became involved in the BG-12 clinical trial and was in the group receiving Copaxone. After the two-year study ended, I’m still taking Copaxone. I don’t like the daily injections, but I haven’t had a relapse and my symptoms are generally under control.
I have been on copaxone,rebif and avonex and all three medicines had very bad side effects on me. I decided not to take any medicine for MS. I would love to try the new Gilenya pill but cannot due to my medical bills are too high and cannot afford to take alll the required tests. I have not been on any medicine in a year. I will just have to leave it in Gods hands.
I was diagnosed in 1993 with RRMS and was on Betesaeron then Avonex and was considered lucky that the interferons were available. I took interferon for over 11 years. I am now on Tysabri and am an incomplete tetraplegic with Secondary Progressive MS. I think I knew this all along.
I injected avonex for 1.5 years. I had very bad side effects. six hours after the injection every week I had to be in bed or I would not be able to get there. The side effects would contiinue from my friday noon injection unti tuesday. Musle weakness in the right dorsiflex and balance was my main symptom with ms prior to starting the avonex treatment. During the 60 hours following the injection this weakness increased dramatically and would slowly subside by midweek in time for another injection on Friday.
It caused anxiety leading up to the injection. Pain from the injection site and the possibility of hitting sensitive tissue was alway in my mind whislt injecting. I found the deltoid injections scarey. It was a relief to get the injection each week over with so I would be free of injections for another week.
I didn’t see any benefit over the 18 months I used it. I started off with lapsing remitting (I was told the specialist gave me the benefit of the doubt) and was eventually diagnosed with secondary and then primary.
I was 46 when diagnosed with ms. A doctor had 5 years before noted me swinging my leg out and mentioned ppl with ms do that.
I am now 51.
I was on Avonex since my dx in 2009. Last year’s MRI showed “silent lesions–Juli, do an item on that). Apparently small lesions without having a relapse (so much for my theory on why I didn’t need regular MRIs). Anyway neuro put me on the oral pill, Gilenya in January. She keeps up with all this stuff and I surmise she knew the results of that study were coming out.
Re: Gilenya, aside from the hassle of being out-patient hospitalized for 6 hours for the first dose, I’ve had no problems.
I have been on rebif since the end of 2007. I have had no side effects. After a few months of taking – no relapses. I am not sure if it is the rebif or just luck. i would like to try Gileneya but am hestiant since it could have bad side effects. I would love to quit injections. I am so tired of expensive medications.
I’ve been on Rebif since I was diagnosed in 2005 (although I’ve probably had MS for at least 30 years). I haven’t had a major relapse since then and have had no significant progression since then either. I also don’t have side effects. I’m reserving judgment and will keep taking it for now. At my next neuro appointment I’ll discuss it with my (fantastic) doctor. Like you, Julie, I had some reservations about how the study was conducted. I’m also having a hard time getting my head around the idea that a fewer number ofbrelapses doesn’t retard the progression of the disease, which is what the study seems to be saying. So I’m skeptical, to say the least.
I’m going to stick with Avonex, even though my Saturdays are pretty much useless due to horrible muscle aches, headaches, and spacey-ness. I keep telling myself “it’s better than a relapse”. As soon as my Medicare kicks in this fall, I’m going to see about getting Gilenya, or even wait for the BG-12.
For now, I’m just looking forward to getting the Avonex pen in my next delivery.
Just spoke to my doctor yesterday about it. She said she had vaguelly heard about the NYT article. I was a bit disappointed at her reaction because it seems to have been a substantial study and written up in JAMA. Her reaction was vehemnt disagreement witht the conclusion of the study based on her own 20 years of heading an MS Center. She feels the interferons have definitely helped. One proof she cited was that years ago many more people used to be admitted to the hospital for steroid tx whereas it is much more rare now. Not sure exactly what to make of that.
I am coming from a different place because I have had MS for 21 yrs. and am “secondary progressive”. I’ve taken avonex, copaxone and rebif. I recently started tysabri because there was some feeling that it could stabilize the disease in someone like me. I’ve lways believed that it was right to be on the interferon because maybe If I had not taken them I would be worse.
I have been taking rebif 22mcg for the last year,I just had a flare up where my left side became weak&num .I got a M..R.I stated i have a new lesion on my right side.Now seeing this notice will look into differant option
I have a “working diagnosis” of MS and I have been on Avonex for three months. The consensus is that I have had this for several years; fortunately my case is fairly mild. Because I have some permanent numbness and issues because of the delay – for now I will follow the doctors recommendation that I stay on the Avonex.
I am taking Avonex now for 3 years and my relapses are aparently over! I mean, I really think in my case decrease relapes. I have side effects all weeks after taking it (flu sympthoms, half a day of work lost, minimum).
With this study start wondering if these drug is really a good thing to take so many years,… My neurologists wants me to contunue taking Avonex, inspite no relapes….
I was on the finglomod trial for years and then went on Gilenya when it became approved. Because I was on the trial, Norvartis helped pay for the drug. I started on the trial right after being diagnosed with MS.
I quit the drug over 8 months ago, after a skin virus took over my life. One of the things that Gilenya does is lower your lympocyte count. My lympocyte count is still low after 8 months and I am still fighting the skin virus that is a childhood disease. Most adults who get this virus have HIV. I do not plan on taking any of the current MS drugs in the future, especially after this news. Although truthfully, I had made that decision before the new information. I do not know if my immune system/lympocyte count will ever return to normal. This means I am susceptible to many mores diseases than just MS, like cancer, etc! These are things I could die from. I am scared and worry more about that, than my MS at this point.
Just wanted to share, so others could be armed with informtion before they make the leap to oral medications.
I have been injecting Avonex since 1997. The first night I was injected I told my parent’s I felt like I wanted to die. I woke up the next morning and felt fine. I used to get headaches as a side effect, but since I started taking Tylenol before the injection the headaches have gone away. I did have a seizure about 11 years ago, and had some trouble walking and writing, but with the help of intravenous prednisone and keeping up with my Avonex injections, I feel just fine and would not stop taking Avonex because some blowhards seem to think it does not work. MS is a unique disease… what works for some might not work for others. Avonex is a crutch that I depend on… unless I start to feel any ill effects after 15 years I might think twice about sticking that thing in my leg every week. Nevertheless, there is a pen now and that thing is SWEET! It’s almost like Christmas.
Perhaps I missed where you included the JAMA editorial from one of the top global MS specialists explaining the results? I’ve been on Avonex for three years and after the first six months I had 50% remyelination and have had no disease progression, as determined by MRIs, since.
There were several issues with the Canadian study.
http://jama.jamanetwork.com/article.aspx?articleid=1217217
I have first hand experence with this. They thought all was well for me and then I went through a period that landed me in the hospital for three months. One point I was in intensive care at deaths door. The Doctor said that the interferon had stoped working for me.My guess is I had been in remission then I went back into an exerbation. The Doctor put me on Tysabri. We’ll see what hapens. The bell rung time for the next round. I will never stop swinging.
One of my neurolgists put me on Rebif. I do not have physical issues but I do have cognitive issues. I started Rebiff late Oct. 2011 This is when the neuroligist diagnosed me has having MS which I really have had since 1999 with numbness on my left side which lasted 4 months.I have since stopped taking Rebiff in Feb 2012.
I did have some flu like symtoms plus based on not having physical issues with MS(I did back in 1999 for 4 months) I did not see why I was taking Rebiff. I stopped on my own.
Giving the injections to my self was not fun but at least I was using the (Gun) injecton so it was quick. I sometimes had redness where the shot went in. You do have to keep rotating the areas in which you give your injections. I started using my but as an injection site.
For 20 years stuck myself with either Avonex, Rebif or Copaxone. Three years ago I decided to stop the nonsense and went cold turkey and stopped blindly sticking myself with one of the many unproven and unknown drugs people with MS are told to take to help them cope with the MS disease. Fortunately, have experienced no further progression of the disease since building up enough courage to stop the daily sticks of Copaxone three years ago. Today, we learned of just three ineffective and expensive drugs for MS patients. This is just the start of the other MS drugs being exposed for their ineffectiveness for all of us that live with MS and simply are looking for some honest answers. It’s a shame organizations like the NMSS are not willing to help people understand the true effectiveness or ineffectiveness of the MS drugs fed to all of us that live with MS.
I am surprised by this study. I have been taking Avonex for 3 years now – no relapse and my most recent MRI showed that my lesions have actually shrunk. I don’t like taking a shot, but so far I am satisfied with my results on this medication.
Great post, Julie and comments. I’ve was diagnosed 2000. Initially took Avonex for nine months, multiple relapses, ultimately ended up in wheelchair. Repeat MRIs. Significant new lesion load now including the spine. Switch neurologist and started Rebif (in trial for their injector, Rebiject). I’ve been taking Rebif ever since (2002). For me, despite any findings, trials, etc., Rebif is doing its job. I’ve had13 MRI’s since starting Rebif, all revealed no new lesions, none. A DMD that is doing its job to stop/delay the progression of this disease. I am not a radiologist. I asked my neurologist to show me the lesions. I needed to know and understand my CNS. Today, I feel confident that interferon1A has controlled, slowed down my MS based on MRI, relapses (2 in 10 years). It is now that I’m beginning to experience gait issues resulting from lesion damage on my spine. Needless to say, I’m a huge proponent of high dose, high frequency…and don’t forget your MRIs, even if your feeling good, the don’t always correlate. Its important to me to be my own advocate and together with my neurologist, monitor my MS with the great tool, MRI. You’re all staying strong with your wonderful attitudes. Keeping that hope alive. There will be a cure!
I was on Rebif for approx. 15 years. Gave myself injections 3 times a week until my body said no more. It started to become inflamed in all areas that the needle touched . So went to the G.P. and his office gave the needle to me. Yes it became inflamed again. So I called the M.S. Clinic in London Ontario and told them that I was not going to take this any more. They responded immediately and changed my medication to Avonex. This one is an AutoInjecting Pen type Needle. I give it to myself only once a week and it is so much easier, ( SO FAR )
I’ve been injecting Rebif for 3+ years now and I can only assume that I haven’t gotten any worse. I see the neurologist and he just says there’s still no cure, nothing to do … see you in a couple of months. I did get pretty depressed for awhile with the never ending injecting and whilst I have had to come to terms with the injecting 3 times a week, it’s benefit is that it does relieve the pain that flares up.
I’m not sure how to feel about this study. I guess it’s time to go back to the neurologist and see what they have to say.
I was diagnosed in 2000 with optic neuritis which lead to an MS diagnosis that was backdated to 2000. I started with Copaxone, quit, started Betaserone, quit, and just started on Avonex a few months ago. I didn’t start because of the promise of slowing disability progression or reduction of relapses because they’ve never really promised much anyway.
However, my neurologist said there is some evidence Avonex prevents brain atrophy. Since my cognitive function decline is my main symprom, I signed up to be shot for a third time.
Will I continue to take Avonex? If my insurance will continue to pay for it, I guess I will. It is awfully expensive for my insurance company to keep paying for it after these studies.
I took avonex for 6 yrs,started having a few more symptoms,had a MRI and old lesions had healed,a few new ones appeared.Since then taking rebif 22mcg,things are going fine since the change.I will continue with this until I see the neurolgist at my next appt.working full time.
i have been on beteseron for many years—was on avonex the first 2 years i and have MS `14 years now—as for me—at this point nothing matters—i recently had surgery and had a device inolanted to help control my bladder problem—-and unfortunately becaue of the MS—this isnot working as it should have
i continue to take the shot every other day—but i am just bitter as my progression grows—but as i say—this is the life i was dealt and i will dela the best i can
I have been on Avonex since I diagnosis 4 years ago. I have always wondered if the drug was doing me any good. Meanwhile, it makes me feel so dreadful for so many days that I have long since stopped doing the shot once a week. I now do it once ever two weeks or so, trying to fit three days ‘down’ into my schedule.
I’m not disappointed with the study or the article. Both just confirm what I suspected anyway.
Maybe I’ll now book an appointment with my Neuro, but he’s next to useless anyway.
I was diagnosed in 1986. In 1997 tried Betersone, had to quit. Tried Avonex, had to quit. Tried Copaxone for 10 years. Quit on my own as I felt I was receiving no benefit and I detested injecting myself daily.
When my neurologist found out, he was not happy and felt as long as insurance covered, I should continue. Started again for 10 months and saw no change, good or bad.
Saw a neurologist who specializes in MS and he agreed the Copaxone was most likely not doing any good. I have now been 7 months without any medication and see no changes.
I am skeptical of all MS medications. I believe the best thing that has helped me personally is exercising within my limits, eating right, staying busy (I still work full time) and just being plain too stubborn to give up.
Just Tuesday night, after about 2 years of doing injections (1 year of copaxone, that wasn’t helping me, and now a year of Rebif), I had a mental breakdown. The injections have gotten so painful! I have anxiety about doing it and then because it is so painful, it causes me to twitch and accidentally pull away from the machine and then I have to start all over again. In thought I had this injection thing down…ugh!
I spent 8 years on Betaseron and Avonex. They were a terror for me financially, hurt my lifestyle for some years, put me through some of their side effects, and never showed me one single benefit. I was only told they make my future better. I only got the facts about the DMDs from reading and chatting online AFTER I stopped taking them. The damage to me and my confidence in most medical areas has been done.
I have been on Betaseron for two years this week. I chose it because it had the longest track record of delaying disability….more than 20 years. This is still enough information for me to keep injecting until someone verifies this study more completely and my neuro is convinced it will not longer help. My side effects only get bad when I am stressed, got too much sun at the beach (;-/ because sometimes it is worth it!), or skipped and injection day. I want to give myself the BEST chance and will continue therapy until something else is verified and proven for 10 or 20 years!
I was diagnosed in early 2011 but have had MS since 2009ish. I started taking Betaseron and gave it a little over a year chance. It made me feel horrible…simply horrible. Between injection site issues, flu like side effects and no sleep on injection nights, I was wearing thin. I read something out of the UK a few months ago that basically said the same thing as the BC study and in fact went one step further to say that the CRAB drugs could actually make some people sicker. About a month ago I decided the drugs aren’t worth it. I have opted to use diet to control my symptoms and in August will be going for CCSVI. I feel better being off the drugs. Still have all my MS symptoms but better without the drug side effects. My next step is to find a way to cut back on work. A decrease in stress will certainly make me feel better for sure
If you read the Avonex package insert closely it says that Avonex failed to meet 4 of 5 secondary endpoints for limb function tests in its clinical trials. I made inquiries to Biogen and the FDA for further info and received nothing from Biogen and a CD from the FDA two years after my request that contained nothing on the issue. My doctor participated in the trials and he had no response to my questions but said he would make an inquiry to Biogen. He gives speeches for them. Again, no response.
When you make an allowance for nonresponders who drop out of trials before completion what do the numbers really mean?
I took Avonex for several years and now wish I never heard of it.
I have been taking Betaseron since 1996 and haven’t relapsed since then I’m afraid if I stop it will trigger a relapse so, I will stay with it for now. I believe it is helping me.
I suspect the disease we know as MS today will be divided up into more specific disease descriptions that will allow doctors to prescribe drugs that actually work.
I was hoping to hear more about this after this 2010 article that suggested that, “Interferon-ß is typically the first therapeutic choice for most MS patients, but there is a subset of about 30 percent of patients for whom it does not work and may make the patient worse.”
http://main.uab.edu/Sites/MediaRelations/articles/75155/
The process may suck, but wouldn’t it be great to have medicine that actually worked?!?!!
I’m not good about taking my interferon, and I don’t get a flu-like reaction after injection, so I don’t really have an excuse. But whether I’m taking it or not, it seems to make no difference on the course of my disease.
After the first four years of diagnosis, I have not had a relapse. I seem to get progressively worse, very slowly.
Some people seem to think that means I’m in remission. How do we define being in remission and having SPMS as being different from having RRMS and being in remission? It just seems to be a matter of how much accrued damage I have.
For me, delaying disability is very important. I have spinal lesions and already have a hard time with my legs. I’m going to have to talk to the neurologist about a different drug. Copaxone is out (allergy and repeated IPIRs) so maybe an oral is next.
I had my first relapse in Sept. 2002 and spent a month in the hospital. (By the way, I had not had ANY signs of MS prior to the first relapse) I never really got “back on my feet” and had a MAJOR relapse in March of 2003. After three weeks in ICU and another six weeks at UCLA, at some point I was diagnosed with Relapse/Remitting MS. I was immediately put on Betaseron. I am VERY happy to say I haven’t had ONE relapse. If you didn’t know my diagnosis, you wouldn’t know I have MS. Therefore, I am disputing those articles that state interferons are not effective. MINE WORKS!
I have used Betaseron for almost 4 years since my diagnosis and have not had a relapse. My husband is a doctor and I read the article. The article does not discuss those of us that have used interferon successfully. You have to be very careful when you read articles like these. I plan to continue treatment!
I injected Rebif for 1 1/2 years and was miserable throughout that time. I had flu like symptoms, constant pain in my muscles and injection site reactions. I am now using Gilenya and feel good again. I am going broke on Gilenya, but at least I feel better. I do miss the assistance on the high deductibles and copays that Pfizer has for Rebif. The Gilenya Go program is not nearly as helpful for me. I guess we can’t have everything
I moved from CA to OR and found another great neurologist.. She was concerned (after reviewing all my history and comparing MRIs) that the side effects of the Avonex were worse than going off the shots, especially since I have been in remission for more than 15 years. Side effects for me (and many other of her patients) are severe depression and fatigue. For me psychologically, I can’t stand any more shots after 16 years! I went off June 21, and actually feel better. The news about the interferon studies came out just after I went off the drug. To think I gave myself over 800 shots! However, I feel much more positive each day, and do have slightly more energy. I hated being tied to a schedule where I had to plan my shots and never knew when I’d experience the flu like symptoms (not every time). To me, the news reinforces my decision.
It is disconcerting to read about a study showing that Avonex does not prevent progression.
I have been on Avonex since June 96 and have been relapse free. I do seem to have lost some mobility although can still walk short distances when well rested.
It does appear to be beneficial for me. After all, I have had no relapses since on it. So I will continue with the weekly injections.
I am very confused to see this article so late in the game after the introduction of Interferons. Of course, like all M.S. studies, the number of participants wasn’t exactly enormous. Also wondering if our doctors knew this news was coming – last appointment my neuro. said that we would discuss more about the oral drugs next appointment. I honestly can’t say the injections were that bad…when I thought of all the good they were doing me in the, “I may have M.S. but M.S. doesn’t have me!” battle! Now I am feeling P.O.ed. I have always thought that even if the effect was “psychological”, if I felt better, who cared. Now I can’t fool myself about the Avonex, but really, I feel so crappy every day that I should be glad that it is becoming more evident that this is not effective so that science can find something that is. Argh! “The Emporer Isn’t Wearing Any Clothes!”
I was on Avonex for two + years until I developed major liver problems had to wait 6 month to start on Copaxone, just to find out that I am allergic to it, developed a nasty rash. Again I had to wait 5 month and then started on Rebif, so it is difficult for me to say if the interferon is working or not. Every time I had to stop my walking deteriorated more and more, my lasted MRI did not show any new lesions I will definitely discuss it with my Neuro.
I was on Avonex for two + years until I developed major liver problems had to wait 6 month to start on Copaxone, just to find out that I am allergic to it, developed a nasty rash. Again I had to wait 5 month and then started on Rebif, so it is difficult for me to say if the interferon is working or not. Every time I had to stop my walking deteriorated more and more, my lasted MRI did not show any new lesions I will definitely discuss it with my Neuro.
Well I was on avonex for 9 years and I had to stop because I became allergic to it after 9 years. So I do believe Avonex did keep me relapse free. Now I am on nothing. I think If you can take Avonex it is worth trying. GOD BLESS
I had been on copaxone since 2000. In 2009 I began having what was eventually diagnosed as chronic idiopathic urticaria w/ angioedema. This was a horrible allergic reaction that went on for about 2 years. Neurologist (associated with world renown MS clinic) said it was the copaxone & to stop taking it. Terribly wrong call. He prescribed REBIFF instead. Took REBIFF for 6 mos. Completely lost ability to walk & most of my balance. Neurologist then says “oh yeah, that happens to some people…”
The allergic reaction disappeared one day. I have been back on copaxone for 3 years with 3 annual MRIs showing no progression & no active lesions except I still need a 4-wheel walker in the house & a wheelchair for outside. Pre Rebiff, I was doing free weights class 3 x’s per week & and water aerobics on alternating days.
Has anyone else had this experience?
I have been taking betaseron since it first came out and I have had no problems with it. I have had no side effects and I do not believe I would be doing better on any of the other injectables. BEcause I have Sarcoidosis that formed knots under my skin I do not want to take copaxone which some people say causes these lumps to form.
My doctor told me before that if it is not broke than leave well enough alone. I feel like this may be true for some people that it does not totally help but for me it has helped.
The study results were disturbing; however they were unique. The take away for me is that we remain in the infancy stages of understanding all neurological diseases. More funding for research is neded. This is a marathon and not a sprint!
I was diagnosed with MS at the age of 21. I am now 42. I started Betaseron in 1993. I have relapsing-remitting Multipe Sclerosis. I don’t agree with the article. I’ve had to go on and off Betaseon for my pregnancies. I have not had an attack since 1993. So something has to be working with this medication.
I was on Copaxone for the first 9 months after my diagnosis 2 years ago, felt pretty miserable and had a lot of sore injection sites. I switched to Rebif, and have felt significantly better in the year I have been using it. I used to have an occasional headache the day after injection, but typically I have no side effects at all. I have had bizarre hormonal issues in the last 6 months, maybe because of the Rebf. It’s certainly something I will be investigating further.
Very interesting comments. There is a new study that was published in the journal Neurology, that says that the reason Interferon B works for MS is because it triples the production of Vitamin D in your system. The study also said that they found that Interferon B only works if you have at least a certain amount of Vitamin D in your system to begin with.
I was diagnosed several years ago and decided not to take the pharmaceutical company drugs, but instead I have been taking 5000 IU’s of vitamin D daily and I’m on a low saturated fat diet. I have not had another relapse since beginning this protocol, more than three years ago.
Below is a link to an article on the study about Vitamin D and Interferon B. I’m not giving out medical advice and you should consult with your doctor, but if I were on Interferon B and wanted to stop, I’d first get my vitamin D level tested and then increase my D intake as I was stopping the Interferon B. and test it again in a few months, to make sure its in the middle to top third of the normal range.
Good luck to you all. This is a really rotten disease and its very difficult to know what the best path to treat it is. But this new study provides more clues that having optimal vitamin D levels may help treat MS.
Here is a link to an article about the study:
http://news.ninemsn.com.au/health/8506632/vitamin-d-links-to-ms-supported-by-study
I had a severe first attack that kept coming back. I couldn’t stay out of the hospital longer than a week till I got on Rebif. I have seen a slow progression in spite of no major relapses since. I like the no relapses but the slow progression is like being nibbled to death by ducks. I see a new neurologist in November. (old one retired). I want to discuss perhaps adding something to the rebif. Maybe using rebif along with something else would be the best of both worlds.
I would be really interested in the oral drug. I’ve been on Avonex for 6 months and it’s going fine apart from extreme exhaustion the day, and sometimes up to 2 days, after injections. So if I found something that didn’t do this I’d be happy!
all these were suggested to me. Dr to Dr. I am hypothyroid.” But it will slow it down. You are getting worse’ NO NO NO a thousand times NO. Frustrated drs. “difficult ” patient. I can read still. I am cognitively impaired. Pissed off a lot. However don’t put something in my body thats will destroy my perfect blood work and organ function I ate my way and exercised to get. I am sorry for those who are on the medication . I came late to the party and was diagnosed later than most even though I already had the demon. And still I said NO! Thank God.
Rebif for 3.5 yrs, never missed an injection, no flu-like symptoms unless I forget to take Tylenol before/after (I don’t). Everything has improved and I’ve only had 2 suspicions of lesions, one disappeared. Only problem is occasional spots in my vision. Oh, but the injection site purple marks are getting ridiculous, and possibly necrotic ;-( Other than that cosmetic complaint, it seems to work well for me.
I have refused to take any of the MS drugs that are out there until the magic bullet comes along. Which hopefully will be in the next year or two. Just a once a year infusion is all I am willing to take! A Professor of the Department of Urology at a prestigious university said to me that Neurologists are useless when it comes to treating MS symptoms. I totally agree with him! I have had MS since I was 25 years old and am now 57. Neuros don’t even following the latest drugs news about MS! When you ask them questions they don’t know sh@t! The only doctor that has helped me with an MS exacerbation is an Opthamologist who is more knowledgeable about MS than any Neuro I have been to! I hate Neurologists! If u you have MS its a waste of time to regularly see them!
I went from Avonex to Rebif then to Copaxone for the last almost 5 years. It seems that it is holding me fairly steady – no major relapses – although there are plenty of what I call minor ones. In my opinion – each individual is so different even though we are still similar – each person will react differently to any and all drugs taken. We just go from day to day and hope the next one is better.
I have been injecting Avonex since the fall of 2008. The first times I was injected I felt really sick. I was in Florida for the winter and endured the side effects until I returned to Michigan and got a new neuroligist who prescribed an 800mg Motrin an hour before injection. I used to get all the side effects, but since I started taking the Motrin I feel pretty good. I also take 2 Motrin PM seven hours after my injection. I am going to continue taking Avonex injections, I feel just fine and have not had any new leisons. MS is a unique disease… what works for some might not work for others. Avonex is a something that I depend on… until there is absolute proof it doesn’t work for anyone I will continue to take it. I just pray my insurance company keeps covering the cost; they could use the JAMA report as an excuse not to pay for the drug.
I’m pissed off. I’ve been shooting up every other night for 4 1/2 years with multiple side effects – including shaking/shivering so hard during the night my husband had to hold me down. The pain the day after (flu-like symptoms) has been less than enjoyable as well. And did I mention that my insurance company won’t pay for it? This drug, that may or may not do a damn thing, costs $41,000 here in the U.S. I’ve been very lucky to qualify for their patient assistance program each year, but it comes with great stress and anxiety as I fill out the application each year – which in turn kicks off my MS symptoms. I went through all of this because I was told this was the best choice to try to reduce the number of relapses, reduce the length of any relapses and reduce the severity of relapses. Now – this study suggests it does none of those things. A waste of time, energy, pain, hopes and dreams.
I have always ? these horrible drugs. I was on rebif when 1st dx in 2007. Felt horrible but always thought it was just ms symptoms. it wasn’t unitil i went off to try and get pregnant did I realize that this drug was killing me. I felt 100% when i went off. It’s been 5 yrs and no relapse. I recently went back on because I felt if I have a chronic illness and there is therapy to help….just deal with the sickness. Have been on since April and the ms feels so much worse!!! is there anyone with the same experience? I will stop this awful drug!!! Makes u really ? medicine. Best to all!
I was diagnosed in 2007 with PPMS. Started on Avonex, but after 9 months was grateful to come off it. I went through about a 6 hour period of PROFOUND depression a short time after the injections. Never experienced anything like that before . . . and I have no depression issues otherwise. I really felt unsafe and was glad to stop the Avonex.
Since then, I continue on low dose Naltrexone, Neurontin, as well as vitamins B and D3. My progression has been very slow. A year ago, I started on Gilenya. I experienced some initial lowered heart rate, but this was a very short term problem. Otherwise, the Gilenya seems to be working well. I continue to be largely stable in terms of new leisons and overall progression. No significant side effects other than acne or small injuries seem to take much longer to heal.
I share folks’ frustrations and concerns, but we just have to accept that there are no guarentees with any of these drugs. You have to have docs you have confidence in and the willingness to do your own ongoing research and analysis.
My wife takes copaxone. However if she was on one of the others I would be contacting my attorney. I am so proud of my wife for having to deal with both the disease itself and having to stick herself. If I found the medicine didn’t work and paid all of that money and most of all watched my wifes disappointment – I would flip out and someone would have to give some answers and pay. God bless all of you on those other drugs. I’m thinking and praying for you.
I have been on Betaseron since 1995. I have had no relapses. I, do however, look like a pin cushion. Being on this has been great for me. After reading about this study, I was very concerned and will be asking my neurlogist about.
I have been on Avonex for 15 years!I feel that I have benefitted greatly from it. I am an R.N. who works full-time and part-time. I am able to walk and/or run on a treadmill 2-3 times a week.My last exacerbation was 5 years ago.I also try to follow the M.S. Recovery diet as much as possible.I only wish that my mom could’ve taken these drugs. She had M.S. also.I lost her in 1991.
I was on Betaseron for 8 years…side effects were what I was told but then later (after 8 yrs) I started to have the same side effects I had when just beginning … my dr. said maybe immunity built again but could not test for it…I have been off of it for 10 yrs and I’m still not sure what difference it made after all that…I won’t go on it again…when I heard of the recent questions about it I was not surprised…I still had attacks, maybe not as severe, but I don’t work any more and my circumstances are different from when I took the drug..so I probably will never really know if it worked
I have been taking Avonex on and off for 16 years .I went into the BG12 study but I had a hard time remembering to take all the pills so I went back to Avonex.I tried Betaseron but the site reactions were over the top.I’m back on Avonex and the flu symptoms are back times 2.I hate the aches and fever but I wouldn’t mind if I thought it worked .Who knows with this rollor coaster of a disease .I get up in the morning ,go to work ,try to eat right and exercise three times a week.Fatigue is a killer ,exercise is what has kept me vertical now if only the drugs really worked ………
Copaxone is no better in preventing disability than Inteferon. This was just a newer study showing no results from Inteferons.
Of course, my neuro found fault with the study. It’s hard to know who has a greater psychological need for the drug to be effective, him or me.
I will continue for now and see what happens in the next 6 months.
I just want to say that I have been on rebif for about a year and a half, I was diagnosed back in Mar 2011 and I feel much better since I have been on rebif. My lesions have slowly lessened. I will be seeing my neurologist at the end of Aug and will probably have another MRI appt. Hopefully, there will be less lesions. Yes, I still walk with a cane, but I have noticed a difference since a year ago. I will continue taking rebif; at times I do get flu-like symptoms, but not all the time.
When I was diagnosed in 2003 after many years of symptoms I decided on low dose naltrexone. Had to fight like hell to get it from the neurologist but doing well on it with no side effects.
My cousin is on Avonex and last I saw her two years ago she was doing ok too.
JMO but not enough is known about MS, just wish they really knew what causes it.
Have noticed lately that many of the meds for MS and other neuro diseases they are finding the meds are not working : (
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I hate hate hate needles and the thought of the shot every week freaks me out but have harpooned myself for over 15 years… The news is distressing but why rock the boat by stopping ?
Tempt fate?
I will tell u I have told my neuro as soon as BG12 is approved…. I’m first in line for it!
I took nothing from first known attack according to neuro which as 1996 until 2009. No progression other than numbness hands during 13 years of no meds at all. Not even problems with fatigue until I started Avonex April 2009 until Jan this year and got worse the whole time I took it. besides felt horrible the whole time. I think the drug companies don’t want us to find anything that really arrests the disease. They are making too m while we remain sick with active MS. Too much money for the drug companies with just having drugs available that slow it down a little. I am on copaxone now, but thinking about quitting drugs altogether again.
Took Rebif for 2 years after initial diagnosis in 2003. Couldn’t tolerate the side effects, so neuro switched me to Avonex. Took Avonex for 1 year. Couldn’t tolerate the horrible side effects. Stopped all MS drugs cold turkey and realized the drugs were what were making me feel so bad! Neuro gives me a hard time every visit for not taking the latest, greatest MS drug.
No more. No more useless Neuro, expensive annual MRI’s, MS drugs! When first diagnosed, I did whatever the neuro told me and still trusted the medical industry. I have learned so much since then! Do your own research, there is so much out there on how to treat MS and adding toxic, dangerous drugs is not for me.
Would never have known I had MS if not for a stroke due to accident that happened five years ago. Saw few lesions and asked if I had symptoms. Only one possible instance 20 years (!!!) prior–long before they could just pop you in an MRI. Was told then I might have had attack of Guillan Barre and needed no further treatment. So I have basically gone 25 years with no meds and no progression. I am thanking my lucky stars they DIDN’T have MRIs back then because who knows what roller coaster of meds I would have been on. After this more recent discovery, they convinced me to go on Copaxone but had horrible allergic reactions and terrible welts so went off after 11 weeks. All my MRIs for past 5 years (since stroke) have been stable. I have occasional tingling and buzzing in feet that usually resolves over time. If I ever do have a real relapse, I will have to think hard about going on treatment. I think there must be lots of others like me out there who probably would not have progressed with or without meds…and it’s possible they skewed the studies. This disease is just too wacky to think that one drug fits all.
I really appreciated all the comments here. It helps to here from people that are going through what I’m going through. I was diagnosed with MS about a year ago when a relapse made most of my right side go numb. We figured out that my first real relapse was four years prior when I had a severe vertigo attack that kept me from work for a week and never completely went away. I’ve been on Extavia which is also a IFN B drug. They bought the rights to sell it from one of the three mentioned in the study. I’ve been taking it for over a year an I’ve been lucky that my own real side effects are being tired on the injection site gets sore.
I’m really considering stopping since I’m reading small study after small study that high vitamin D intake is just as effective and actually healthy for you. I’ve also started using essential oils and that seems to help my symptoms (arthritic like pain in hands and back). May God bless us all that they will find a real treatment.
I have started paleo 4 weeks ago and.getting off avonex its not delaying anything as my mild symptoms.occasionaly come anyways. Forget the doctors i know the Lord has given us the real medicine in the food we.eat!
There is no definitive answer regarding the effectiveness of interferons, and understood this since my first Avonex injection (May ’04). But there are only 4 possible scenarios:
1. I take it and it works
2. I take it, but it doesn’t work
3. I don’t take it, and it doesn’t work
4. I don’t take it, and it DOES work… and spend the rest of my days wondering if quality of life could’ve been different had I made a different decision about the medication.
#4 is the only scenario I CAN’T live with; and that’s indisputable… so I’ll continue with the injections until my trusted neuro says otherwise.
I have Been diagnosed since I was in my 20s I am now 35. I had glandular fever and after lots of antibiotics it wouldnt go. I then work up one day to twitchy eyes, A dead arm and facial weekness like a stroke! Got sent to hosp for a lumber punch and an MRI thats when I found out I had MS and leasons. Im on Avonex Beta Interferon 1A. I suffer about 6 hours after my jab, Headaches, Flu symptoms, all night and its not nice then the next day I feel like an elephant is standing on my head! ive now been told to get 5000 i.u of vitamin d. I think my MS has progressed as im really struggling to walk but they wont send me for an MRI again to confirm this…. FRUSTRATED!!!!!
i am 24 and was diagonised with rrms two yrs ago and have been injecting the pre-filled avonex 30mcg interferon beta 1a for the whole time. i do NOT inject like i should bc i have very severe flu like symptoms for 24 hrs after inject along with chronic pain in my lower back with mild fevers. i try evrything to help with this but cannot find a solution. so i guess it varies with different people on side effects bc i get everything but skin rashes. if anyone out there can help me with this plz feel free to email me at ison974@gmail.com