I’ve been taking Aubagio for almost 6 years now and had been very pleased with the medication. No new plaques or lesions issues were found on my MRIs and I hadn’t noticed any side effects which were caused by the medication. Taking Aubagio was a great improvement over Avonex for me as I had pretty bad weekly flu-like symptoms.
As of the past July, my insurance removed me from being able to access Aubagio and I was placed on the generic for Aubagio which is teriflunomide.
Since last July, I have received three different generic options for Teriflunomide. All these variations of medication I found to be very concerning. To me, that is too many possibilities of problems as each generic has its own formulation.
Last week, I received a message from the drug company stating there may be another generic addition which will bring the types/companies of medicines I have been receiving to go to four.
In late February, I had my MRI completed of my brain, cervical and thoracic vertebrae both with and without contrast. (My prior MRI series was done in 2022 and showed no changes and all areas were holding well.)
This February 2024 MRI series shows ( to the best of my interpretations) a new lesion in my brain and the addition of lesions in my T4 and T5 vertebrae. These new areas didn’t light up with the contrast so they’re “new old lesions/plaques.”
I started looking into legitimate resources to see if any research had been done since the implementation of the genetic forms of Teriflunomide. Thus far, I haven’t located any studies.
Here’s my question- are there others in the MS community who also were changed from the named brand Aubagio to a generic form of Teriflunomide who have had symptom progression and/or MRI results which show the disease is progressing?
I’m trying to gather (even anecdotal) evidence to get a better idea if there are others also having similar disease progression on these newer generic forms of Teriflunomide. I’d like to see if this may be something the companies producing the generics and the FDA should be made aware of- as we all know, we’re taking medicines which we don’t actually know are working for us until they don’t work. So, to alert someone as soon as possible might be helpful if my experience really was related to all these generic forms not holding off the illness.
I was diagnosed in 1995 with MS. And, my greatest progression of plaques has just recently been found along with an incredible increase of sensory symptoms, increased fatigue, weakness and the largest change- these sensory issues are now on both sides of my body. Prior to this past summer, my symptoms were on my right side and had been since my initial optic neuritis and walking troubles at the time of my diagnosis in 1995. These addition sensory changes just seem suspect to me as they appeared after I was taken off of the brand name DMT and placed on several various generic forms of Teriflunomide.
So, are there others in the community who are also finding issues since they started taking any of the generic forms of Teriflunomide?
Thanks in advance-
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I switched to Aubagio after I started Menopause officially in 2022 at age 55. I was dx in 1994 at age 26, no DMTs back then Betaseron was via a lottery. I started self-injecting Avonex at age 29 in 1997, which I continued until 2022.
When Aubagio went generic, I was switched to the generic version (I believe I've only been on one version too). But I haven't noticed any difference in tx since switching to the generic (but I was only on the brand name for one year).
I will be getting my first MRI since starting Aubagio and switching to the generic version this year. I had been self-injecting Avonex for twenty-five years.
Avonex kept my MRIs stable, but I had a few mild flares while on tx (Optic Neuritis 2003 & left-side numbness 2007).
Both flares were during very stressful situations (work problems during my mother's death and then my father had a stroke two years after my mother's passing. Dad lived one year after the stroke. So, I blame the stressful situations for inducing the flares.
Ultimately, I see my neuro in June and will get my MRI at that time. I'm hoping that I am still stable, SPMS without flares or new lesions or significant progression. 😇🙏🙂🤞😽👍
Sadly, we have more similarities than I could ever imagine…ending with stresses over the health and losses of our Daddies. It’ll really do a number on you; won’t it? I’ve also have had work issues which caused a lot of anxiety and upheaval.
Glad the Avonex held you for such a long time and you’ve done well with the change over to the generic Teriflunomide. (I was diagnosed in ‘95 after a round of optic neuritis. Took iv solumedrol monthly until Avonex came on the market. Switched over to it around ‘97, I think it was. I’ve had issues walking, sensory troubles, fatigue, numbness, burning, spasticity, etc- you know, the “regulars.” I did well on Avonex but I had pretty bad weekly rounds of flu when I took the shots. However, it was well worth it if it kept the MS under control. Around that time, my neurologist felt Aubagio would be a better match and 6 years ago I made that change. Sounds like we’re about the same age- I just turned 56 last December. It’s a bummer when you kinda only know a life with MS in it.
So hope your next MRI shows that everything is holding well for you with the generic. Please keep us posted-
sounds like you’re doing a research study that could be beneficial for many!
I had similar happenings when switched to generic Copaxone years ago (new lesions) and this, along with other failed dmts, got me switched to Ocrevus which I’ve been on for a while with bo new lesions (yet)
Glad you found a DMT that is working so well for you!
I just can’t shake the feeling there could be a parallel to the generics ( and being sent so many company’s generics) that may have key there be progression. There not going to be any way to clinically tell - but, yes, if I find enough folks who are finding issues I believe it would hopefully be helpful to let the FDA know. I’ve never done anything like this so I don’t know if the FDA would listen- but, I can hope they might.
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I’m editing this to say I called the FDA this afternoon to see if a pharmacist there would consider my anecdotal situation to be enough to contact them and share the story of how my last 9 months have gone. The pharmacist at the FDA was incredibly nice and said that my situation was more than enough info to share with them and she asked me to also share their number for others who might be noticing that their generic Teriflunomide ( or any other medication, for that matter) doesn’t seem to be holding the disease progress away.
The FDA pharmacist said the more people who share their story, the better -although even one person with concerns is enough for reviews to be done.
So, give them a call if you feel that your new meds may not be doing what we all hoped they could do. The FDA’s number is 1-800–FDA-1088 and that will connect you to the MedWatch department. The person you speak with should be able to take down your concerns over the phone if you don’t feel like filling out their online form.
Writter, when I was on the name brand Aubagio form of the medication- it was wonderful. I was the closest to how I remembered being prior to my diagnosis in ‘95. There were no side effects that I could pinpoint on the medication, no feelings of flu, and my disease progression stayed in check with no progressions.
I try to be as active as I’m able and I do a good bit in my yard. That’s the closest activity to sport I can say. My days of tennis are long gone, I’m afraid. But, I do sometimes take my tricycle on the 2 mile round trip to get the mail.
Yes, it was because of Hmbrd that I realized I may not be the only one experiencing these problems with the generic teriflunomide. Hmbrd began posting about concerns prior to receiving the generic form of the medication.
While I’m sorry to learn others are having issues; I must admit, it gives me hope that the FDA might listen to the concerns. I’m unsure if issues lie with the generic form or that Hmbrd and I have gotten so many different company’s options for generic teriflunomide that whatever our bodies need from the drug to quiet the damage one or more options just aren’t doing the job.
Just saw and read your post. I also got a notice from my pharmacy, CVS specialty pharmacy saying now there's going to be a different generic next time I get it filled. I don't understand what's going on with them that they can't just keep the same medication brands. It sounds like people are noticing differences or declines since starting the generic. Or should I say generics.
I called the CVS specialty pharmacy and spoke with a pharmacist. I asked why we were getting sent so many different companies’ medications. The pharmacist shared they were swamped with requests for the medication and had to take whatever they could get from their supplier.
I reminded her that they were the ones involved with not allowing us to get the name brand medication and that it wasn’t as if the numbers needed should have come as a surprise to them.
I then asked when we could expect to have continuity with the medication based on company. She wasn’t sure. I suggested 6 months or longer? She again said she wasn’t sure.
This is possibly a combination supply need and cost of the bulk order situation- at least in my eyes.
I also asked if I could request a specific company’s medicine. I was told I could but if they didn’t have that company’s product available it would either mean I could miss doses if I waited for them to try to get it or they’d send what they had in stock.
Thanks for sharing the information. I suppose we're at their Mercy. So does that mean that the generic companies aren't putting out enough medications that we're able to get the same one on a regular basis. If the pharmaceutical companies know that there's this many people with MS why don't they make enough medication to send to the pharmacies? It doesn't make sense.
I’m not sure what the issue with consistency of the generic may be. When I spoke with the Pharmacist at the FDA, she shared that there were 18 or so companies that have requested and are producing the generic form of Teriflunomide. Prior to speaking with her I had found a list that showed 10 companies.
The companies I personally received medicine from via CVS Specialty Pharmacy are companies which are international or have international production facilities. The majority of the locations for my medicine seem to be India.
I then gathered the active and inactive ingredients listings for each of the generic medications I have received.
My next question is about the active ingredient of the teriflunomide. Is the quality or content of this active ingredient the same as the name brand product which we had been using ? I also want to try to determine where the Sanofi Aubagio was being made. Sanofi is a large international company and one place online suggested the Aubagio was being produced in their Farmington, MA facility. Another piece of info I found made it sound as though that may not be the case.
Bottom line to all of this is that the best we may can do would be to share our information with the FDA for them to review the issues we and possibly others may be having with the generic teriflunomide- regardless of the production facility sites. The pharmacist I spoke with at the FDA is willing to help me and others bring this to the department’s attention for them to review. Would you, and others on this forum who have also noticed issues, be open to sharing this information with the FDA?
I’d like to think that this might be the most helpful for all involved. Maybe it would help push for consistency in what medication we receive from the mail order companies?
My background and personality is to dig until I can find answers. It’s just what I used to do for my career before the MS got in the way. But, it won’t matter what information I or others find if we don’t have the backing of someone who can do something about it. It sounded like the more people who share their concerns and possible problems with the generic forms of the medicine- the faster the reviews could happen.
Would you consider also speaking with the pharmacist I spoke with at the FDA ? If so, I’d be glad to share their contact information with you.
Let me contact the FDA on Monday afternoon and ask the pharmacist I’ve been speaking with if it’s best you speak with her or if it’s ok to speak with any of the specialists.
Thank you for speaking to them. I know we’d all prefer to be back on the name brand medication. But, if this isn’t an option due to insurance, perhaps the FDA can say only a single company’s medication can be sent to a patient.
I did find research that said it could take up to 3 months of taking the medication for the medication to be helpful.
I’m hoping if nothing else maybe the FDA can push for consistency ?
Just got off the phone with the FDA. The representative said it was great that you were willing to share your experiences with them.
When you have the time and energy to contact them, she suggested you contact the Med Watch division. Their phone number is 1-800-FDA-1088.
It sounds like they’d be interested in things like when you started on the genetics, how you’re feeling on them, what companies meds have you taken thus far ( I had to call CVS Specialty to get my company for each month, etc. ) that sort of thing.
I really appreciate you taking the time to share your experiences. If you or anyone else reading this post knows of others who are also noticing issues with their genetic Teriflunomide please share this phone number with them.
I’m not sure we can move mountains- but, I am sure we can add a pebble or two to someone’s shoe to make the walking uncomfortable.
MS is so different for each person that sometimes we lose the whole working together to a single goal. Medicine is one thing that is consistent. We all deserve affordable, effective medication. The insurance and pharmaceutical companies have changed so very much just in the not quite 30 years that I’ve been diagnosed. I’m afraid we’re going to have to fight even when we don’t feel like it to get the meds that we need.
Again, thank you- I mean that personally and for the greater good of anyone on generic Teriflunomide or those who may be taking it in the future.
I haven't called yet, but I will. I do still have the information from the three different companies I got the meds from. I think I might wait another week and see when I get my next refill who it's from.
I just got my new refill for my prescription for the Therifluinamide. This time I got glenmark which was the first one that I received. This time they gave me a 90-day supply. Hope I can stay with just this one name brand now. Now I can give the FDA a call and let them know the different brands that I've been receiving. Hope this helps us all to be more stable and receiving the same generics.
I have been on Aubagio since November 2015. It has been perfect for me. The financial aid to get it stopped at the end of last year and my cost after my insurance did their thing was $3000 for 30 pills. I can get a 90 day supply from Cost Plus Drugs for around $30. So I definitely went to the generic as of January of this year. I have noticed a difference in my legs, particularly the right one.
For several years the soles of my feet have been really cold. If I touch them, they are not but they sure feel ice cold. I realized, actually just today, that my entire right leg feels like that. My left, just a little bit, but definitely my right. Plus, my newer kitty, Gracie, loves to lay on my lap. Sometimes she doesn't quite make it when she jumps. (See photo.) I discovered this and I ever felt it, on my right leg! How odd. I do have an appointment with my neuro the end of the month and will be bringing all this up.
Mrsmike9, Sorry to hear you're having symptoms from Aubagio. I developed Neuropathy from Aubagio and had to stop taking it. The Neuropathy continues and my feet sometimes feel like frozen ice blocks but they aren't cold when I touch them. I bought a mattress warming pad from Amazon and it's helped me, setting the pad level at 1 or 2 and the timer for one hour. Hope this helps.
Sorry to hear about your neuropathy issues. They really do a number on your balance. I remember the first time I cut my nails and realized I got a little bit more than just nails.
Glad the heat helps you some. Have you seen the polar fleece slippers that have buckwheat in them? You pop them into the microwave for 1-2 minutes and the buckwheat holds the heat for a fairly long time. Toasty-toes! You might enjoy having this option for when your feet feel extra cold.
I'm sorry you're having trouble with the generic aubagio! I had thought that you were liking it; perhaps I am confusing it with Ampyra/dalfampridine. Funny about the soles of your feet feeling cold when they aren't. 🤔
I had something somewhat similar with a particular spot on my leg and on my chest right under my throat, but it felt exactly like a sunburn, even feeling painful when I took a hot shower. It looked fine, and the area on my leg had never seen the light of day, so it wasn't burned. Thankfully, both of them went away. I hope your new symptoms do, too.
That cat scratch definitely looks like something you would feel!
I’m sorry to learn you are also having some symptom progressions while you’re taking the generic form of Aubagio.
If you don’t mind me asking you- are you able to get a single generic company’s product or are you being sent different company’s product for the generic Aubagio?
That’s great you can get consistency for 90 days! At least you have some sort of constant for your body to adapt to a single medication before there might be a chance for a change.
Years ago, I asked CVS Specialty Pharmacy ( where I receive my mail order meds) if I could get 90 days of my MS medication at one time and was told it wasn’t possible/allowed. Last month when I inquired about requesting a single company of the generic Teriflunomide and was told that wasn’t really possible they did say I could now get a 90 day supply of my MS medication with a prescription written by my doctor requesting 90 days at a time.
The representative at CVS seemed to think I’d have a better chance of getting the same company’s meds for at least 90 days at a time this way.
Can’t help but think consistency in our treatment is key to getting the best results from our medications. Our bodies are already topsy turvy on a good day so by throwing a differently formed medication at it every month must really case it added stressors.
Sorry to hear that you're seeing some changes since you went to generic. Those are nasty puncture marks from your cat. And you didn't even feel it, that's not a good thing. I also see my neurologist at the end of the month and will bring this up. But what more can we do. It's not going to get us back on brand name aubagio. I too was doing so well on it.
How’s your Monday going? Hoping the cat isn’t using you as a scratching post anymore.
If I’m reading your posts correctly, it sounds like you may have had sensory issues since you started the generic teriflunomide? I know my neuropathy, burning and spasticity has increased on my right side and has now moved to my left side too. This is a first for me as most everything has been happening only on my right side.
I’m not sure if you would consider contacting the FDA and sharing your story with the changes you’d had since starting the generic Teriflunomide? If you’re not comfortable doing so, I understand. You don’t have to give your name if you don’t want to- I am just because I’m also sharing MRIs to show all the issues that weren’t there prior to the medicine change and then the major changes that have happened since I started taking the generic Teriflunomide.
I don’t know if the medication is the cause and I told the FDA that. But, the only change I’ve made has been with the medication and the fact I’ve been on 3 kinds of the generic medication in the past 9 months. So, I’m not pointing fingers other than to say that after being diagnosed in 1995; my biggest and most aggressive lesions and plaques have come in the 9 months since I started the generic formulation of Teriflunomide.
As a result of there being three of us on this forum who are experiencing issues, I wanted to ask if you would consider calling the MedWatch division of the FDA and telling them about the increase in your sensory losses since you started the generic Teriflunomide? If you would, the number is 1-800-FDA-1088.
Thanks for considering it even if you decide you’re not interested. We may be some of the “side effect” casualties that come from medication or we could be the tip of the iceberg in usage. I’m hoping the FDA can figure that out for us and make things as effective and safe going forward as possible.
(Oh! And, our cats Ruth and Kate send hellos to your kitties-)
I have no problem calling the FDA. Thanks for the number. That makes it easier. I've called them before when the med my Gastroenterologist wanted me to take was not okayed by them for my condition. (It is now so perhaps my call helped?)
I’d like to think that your call was the catalyst to having the gastro-medication approved for that usage. I want to believe that the more folks that let the FDA know of possible issues the better the chance is for review and possible change. There may be nothing more that comes of it but it also could be the push that’s needed.
I’ve got digestive troubles too and use a medication for an off label usage. It’s not a medication that is costly so I’m thinking that’s helped get it approved in my situation. We borrow so many meds it seems in the attempt to get things fixed.
I’m hoping to get all my medical info together this week so I can send it all to the FDA through their online forms. Tomorrow is the neurology appointment I’ve been waiting over a month to have so I’m thinking that’s why I’m waking up every so often tonight. I’m still apprehensive about to not knowing how my newish doctor is going to want to proceed. Guess some things never change no matter how many years you’ve had this illness. It’s still a big unknown some days.
I forgot to say that our kitty says "hello". We now only have the one. Our dear Salem went over the Rainbow Bridge last Friday. His cancerous brain tumor started to make him not feel good, so I broke down and made the call.
Oh! I’m so sorry to hear of Salem’s passing. Making that call to the vet always one of the most difficult calls to make even when you know it’s the time.
We've lost two cats in less than six months to cancer. It has been difficult. We adopted another the day after Christmas from a shelter. Gracie has done a lot to help us heal.
She's a sweetie. I just wish she's stop licking this section on her back so hard. She makes it bleed! I have a baby shirt on her to keep her from getting to it. I slid it off today and bandaged it so I could wash the shirt and somehow she got to part of it and opened it up some. So, neosporen and her shirt is clean and back on, but I wish she'd quit it!
I don't think you're imagining it. I give you credit for making the effort.The problem seems to be what I mentioned in my reply to hmbrd, which is that generic drug manufacturers don't have to do clinical trials to prove that their products work. Either that, or there needs to be a review process when something like this happens to pull the drugs from the market. I could get behind contacting my elected representatives if you get to that point, and I think others would, too.
In the short term, I do think that it's promising that some of the generic products seem to work well for some people, and I hope that you can find one that works for you rather than having to switch to a new medicine. I think talking to enough people to identify which brands are good or bad would be important.
Mark Cuban's Cost Plus pharmacy doesn't seem to be in business to make a profit; I wonder if a letter to them explaining the situation might be enough to keep them buying only meds from "acceptable" manufacturer(s). Mrsmike9 buys hers from there and hasn't had problems, maybe you could ask her which "brand" they supply. Hmbrd mentioned one that worked well for her.
I really wish you luck with this. It's completely unacceptable that patients have no control over what their insurance will cover, yet there's no guarantee that those drugs won't harm us by failing to work, or other means. It really stinks. I wonder if the moderators would be willing to pin your post so that it stays visible?
I think generic meds have to have the same active ingredients so it doesn't make sense to me that they would cause bad reactions, unless there's a sensitivity to the inactive stuff in there.
You would think. I have heard that, too, but it makes me wonder when I hear that people are having problems with certain "brands" of generics. I guess I've been lucky with generic drugs myself, thankfully, but it is concerning.
Actually, that’s not the case. I spoke with one of my physicians earlier this week and with the FDA earlier today.
As long as a company can show bioequivalence, it would be in line for acceptance for use by the FDA. So, a company would need to show that their medication would work the same way as the named medication- that’s all. The same active and/or non active ingredients are not required for the acceptance of a generic form of a named drug.
Don't give up trying to get answers. Does Aubagio have a help line and possibly a way for you to get the original Aubagio vs. a variation? I would also contact your neurologist/social worker in the practice to help you too. Unfortunately, Aubagio didn't work for me, and I went back to Avonex, but if it's working for you, keep looking for the answers. Hopefully you can get back on Aubagio and not have to settle.
I agree with that! If not for you, for others! No one wants to deal with this disease on their own. We need to listen and learn from each other, as well as from the health care practitioners. When you get a satisfactory answer, please share with us!
I’m not sure we’ll know if we’ve gotten a satisfactory answer to all of this. But, I’ll definitely keep folks updated if and when I receive info.
The FDA said they can keep those who report concerns over medication/efficacy changes updated as to when their concerns were reviewed and what was the outcome of these review boards. It sounds like the boards are comprised of doctors and pharmacists who truly understand the ins and outs of such things. So, this is at least sounding like a plus -
There comes a time you have to trust even when so many other groups and companies have let us down through the years. I want to believe there are still people who actually see the patient and not just the money to be made.
(In my research earlier today I found an international press release mentioning one company was expecting to make 1.6 billion dollars on the generic teriflunomide alone in 2023. I’m all for companies making money but these larger companies must be bringing in almost inconceivable amounts of revenue. It could easily create a situation where you could forget about the individuals who are relying on a medication and just see their bottom financial lines.)
I wish I could address your experience with Aubagio (and its generic), but I've never taken those meds. Like you, I was diagnosed back in the nineties (1993, after one periventricular lesion and oligoclonal banding found in my CSF after my neuro did a spinal tap following a bout of trigeminal neuralgia. Most of my initial symptoms involved areas supplied by my cranial nerves, although I had one cervical-level lesion at one time. I've never had optic neuritis, and I'm so sorry you had to experience that symptom.
I was prescribed Avonex in the fall of 1996, and like you, I had no new lesions while on it. But the flu-like aftermath started stretching into four days of misery (I used to call it "Havin' Aches" instead of Avonex) became intolerable, so in 2000, I was prescribed Copaxone. It's been equally effective, and without any side effects. Plus, the injections are subcutaneous (so no more "drilling for oil" with an IM needle!), so I've been on it ever since.
I am very sorry to learn of the losses of your parents.
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Update from neurologist visit in clinic
Forced off Tecfidera to generic, and copay assistance no longer accepted toward deductible??!!
Neuro today
I'm new here..Newly diagnosed with MS
Generic Tecfidera
