I was just curious if anyone had noticed weight loss after starting Tecfidera? I started Tecfidera about 6 months ago, and I have noticed that I have lost some weight without even trying. In March I was up to 175 lbs. When I went to my family doctor last week for a recheck on my sciatica pain, I was at 161 lb I haven't been to the gym since the weather started warming up. I noticed after having to put on pair of jeans because of cooler temps that they are looser than they have been (seems like they are sometimes tighter after not having worn them all summer lol) and a pair of night shorts that I haven't worn in awhile don't stay up on hips too well either I'm not complaining, just wondering if this a VERY welcoming side effect to this drug? It has not helped with my headaches though like it has some others.
Jessie
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bxrmom
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I don't recall this being a noted "side-effect" of the drug although one could check the pkg insert and cross-reference against the control arm of the pivotal clinical trial. This sort of thing isn't typically tracked very accurately in clinical trials. Usually, only adverse or negative effects are captured as data....but if it does cause weight loss, wouldn't it be great as a marketing side-note?!
So happy for you that this has occurred! It is so difficult to manage weight when you can't really exercise!
I have been taking Sudafed for them now, which sometimes helps sometimes not. Other times my cramp medicine works if Sudafed doesn't but the headaches are on/off all day on some days. My Neuro said it's most likely a tension headache and had prescribed Sumatriptan but it didn't work. Started out with 1 pill a week and worked up to 3 pills and nothing so he told me I could stop if it didn't help.
I took techfidera for over a year. Do yourself a favour and stop the demyelination. Inject b12 and take vitamins and folic acid. Only reason you got told to take techfidera is your Dr may have got incentives from Teva to do it. . I think it stinks to hi heaven.
Have to agree doc may have incentives. My first neuro said “you have MS, don’t worry, you’ve had long life. Gonna start you on Tecfidera” He knew I am JCV positive. Notice I said first neuro. Only had 2 appts, got my records and a new neuro.
CalfeeChick what test did you take t know you are JC positive?? I just started Tecfidera (after allergic reactions to Aubagio and then Capoxone). I keep getting the warning literature from Biogen about the dangers of Tecfidera and JC virus causing the brain disease and death. My neurologist refuses to order test for JC virus, even though I have left messeages for it 4 times. Then this week anew primary care doc said only 2 ways to now for sure HC virus active- spinal rap fluid or brain biopsy after death! Is this true? Did you have spinal tape fluid to determine that fact?? I gave active HO virus and check up every 3 months for cervical cancer, and I have shingles virus and Epstein Barr virus and "very suppressed immune system " so naturally I am very worried. Since the other 2 DMTs caused allergic reaction found in only 1-2% clinical trials. Obviously, I have low batting hostory! So how did you know?
agapepilgrim I don't understand why your doctor won't test for the JC virus before as I thought that was a requirement? My Neuro tested before I started to make sure. If your neuro refuses to test you for it, I think I might be looking for a new neuro. I'm sorry you are having a hard time with your neuro.
bxrmom his nurse called back and said he only tests when prescribed tysabri. Did you have spinal fluid test to prove it? My primary care says that was only way and he couldn’t order that. Also said sometimes a brain biopsy is done! I thought a regular blood test would prove it. What did you have done???
It is a blood test to check for JCV. I am JCV positive but the chances of PML are lower that Gileyna so i opted for Texfidera. I also lost weight but i dont know if it was the tecifera or my diet change. ..that lead men to this forum for more informaiin maybe as i didnt see anything in the paperwork either. I research the hell out of all the MS drugs and felt this was my best choice. My Neuro always says im her most informed patient.
bxrmom I didn't notice weight loss with the Tecfidera, but since starting the Wellbutrin I've had about a 10 pound loss. My pulse is faster so maybe my metabolism is higher. Luckily raising my pulse just puts me in the normal area since mine was low.
erash I was on Copaxone before going on Tecfidera so I don't think that caused weight gain. I was on it since 2006 after being diagnosed with MS so I'm not sure what the deal is. It's not like I eat the best either lol
I have a huge problem with my feet swelling and going up my legs. I'm on 40mg of water pills and was on 80 mg. What makes me swell like that?? Maybe I could walk again
doveflyfree I'm not sure what could be causing the swelling but you should call the doctor if the swelling is getting bad. I have not had that problem unless I had a blood clot and then my leg was warm to the touch. I was on copaxone at the time.
This has been happening for a year now!! It got extremely bad after Irma hit. The doctors keep tossing me back and forth. I'm very annoyed with it. I am on water pills but not sure what to do anymore!!Thank you for helping me!!
doveflyfree oh no!! Maybe it is time for a second opinion!! It's been going on for WAY too long and you need answers to what is going and how to stop this.
Yeah my friend says the same thing. My neurologist is only in every other week and specializes in MS. You're absolutely correct!!!! Do I tell my primary doctor that I want a second opinion from the neurologist or primary doctor??? The water pills can't handle the swelling and going up my legs. Neither doctor wants to deal with it. They both toss me back and forth. I'm just learning how to be assertive and not submissive. I do NEED help for it. What should I do in your opinion???
Thank you for helping me sooo much!!! You and my friend are right!!! How does it work getting second opinions?? Never done it before. Thank you very very very much!!
I would ask for a specialist referral from your family doctor that can help you since they do not know what is going on doveflyfree And the other doctor you see doesn't know what's going on, they are worthless as well. or if all else fails, you can always go to the emergency room and tell them what is going on since it has been going on for so long and can't get any help from either your primary or neuro. Take your friend with you.
bxrmom i hope it doesn't cause weight loss in me. Been on it a month. Already lost 50 lbs from other meds, gone from size 18-20 down to 8 over last 2 years. Keep having to buy smaller sizes at thrift stores. Getting expensive!! 180 down to 120. Oh, that's 60. The headaches come every night and nausea and stomach pain every time I eat. I reported, but no response. Why bother reporting symptoms if doc won't help??
agapepilgrim I hope that it does not cause you to loose much more weight. I don't get nausea or pain after eating, but everyone is different. Have you tried to tell your family doc that you are having those symptoms if your neuro is no help?
bxrmom fily doc says he didn’t prescribe gotta take advice of neurologist. And now I have to change primary doc cause neurologist won’t continue seeing unless I get help for PTSD aggravated by right brain progressing damage. The only psych counselor covered by my insurance ‘‘tis a group at a clinic that required me to see their primary first. So mad at medical and insurance fields!
agapepilgrim I'm so sorry you are having issues with your different doctors and your insurance company. Insurance companies can be a real pain in the *ss!!
I have been on techfidera for over a year now. I can’t tell you if it makes you lose weight because I was thin to begin with.
As for the headaches talk to your dr. There could be something else going on that you need to address. Don’t ignore any symptoms you have you need to stay on top of your health. Be proactive not reactive.
There are pharmacist on call 24/7 at Prime that can answer your questions in regards to your question or concern on techfidera
Don’t do what @toph said to do and just stop taking it. There is a reason your dr has you taking this med as opposed to another. Talk to your dr before you start or stop taking anything. I’m sure you and your dr or I hope you and your dr had a long and in depth conversation about starting any kind of meds. If not now maybe the time to start.
Hi, bxrmom . I have been on Tecfidera since it was approved by the FDA (I want to say 2014 but I am not sure and my memory cells are long gone). I don't recall this being a side effect, but I can tell you that I have held pretty steady at my weight. I have always been thin (except many years ago when I was in college and ate dorm food and actually shot up to 150 lb), and my drs have wanted me to gain a few pounds, and if I really try and eat a lot of junk (which I don't really like to do) I can gain a couple of pounds but it comes off quickly. Can't say it's the Tecfidera, though. I would report it to the prescribing dr though, as it may need to be reported to the FDA. Everyone is different. If you're happy with it, then I am happy for you! Go out and get yourself some new jeans!!!
Sukie427 I have been thinking about getting some new jeans lately lol Definitely need a new belt as the the one I have is starting to getting pretty ratty and loose lol When I see my Neuro in December, I will let him know about the weight loss as well.
I started Tecfidera about 9 months ago, and I have noticed a very slight consistent weight-loss. Nothing as substantial as yours but I started at about 144 pounds and I'm down to 136 which is closer to where I should be. No gym and limited walking so the only thing it is attributable to is the Tecfidera.
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I haven't been to the gym since the weather started warming up. I noticed after having to put on pair of jeans because of cooler temps that they are looser than they have been (seems like they are sometimes tighter after not having worn them all summer lol) and a pair of night shorts that I haven't worn in awhile don't stay up on hips too well either 
I'm not complaining, just wondering if this a VERY welcoming side effect to this drug? It has not helped with my headaches though like it has some others.
Tecfidera
