Side effects

[Daveycoon]

Hi everybody, new to this board, not new to MS. Symptoms began in 1991, diagnosed in 1998.

First reactions to Tecfidera: Hands became numb and itchy, and the (maddening) feeling slowly crept up my arms to about the elbows before it started to go away. This continued for about two weeks, then disappeared. This may be the "flushing" that had been mentioned. A good deal of gastric upset, spent the first week or so next to the bathroom. All side effects seemed to dissipate, and after 3 weeks, there were none to speak of.

The show so far: Just prior to receiving the medicine, one of the worst exacerbations ever. I went out to get the mail, fell, and could not get back up. I could not even crawl back to the house, some construction workers saw me fall and helped me get back to the house. Thank God for them. That afternoon, I received the Tecfidera. The next day I could walk. Without the cane, it was a major miracle. I actually felt like a "normal" person. But as time wore on, perhaps in two weeks, it was back to being the hobbling old cripple I was prior to the medication.

It was rather like a course of corticosteroids... you feel better, but it's only temporary. But at least, unlike the steroids, I didn't inflate like a balloon.

I did take Rebif (made me too suicidal) and Copaxone (couldn't take the injection-site reactions). So time will tell, I guess, if there are any long-term effects. But of all the availible treatments, Tecfidera seems to be the least evil, so based on my personal experience with it, I can recommend it without hesitation.

I wish all of you the best.

JB

[beekeeper1]

Update on my Tecfidera ride: this Thursday will end my 7th week on the new pills. Drinking a 12 oz glass of milk at bedtime has kept the nausea under control, although I must eat upon waking every day or it worsens. I also keep protein snacks nearby for between meals to help. Other than flushing on day 1 (and none sense), the medicine has been very tolerable.

Blessings

[Ladymac]

Awesome!My milk with my brownie and icecream is working well too

[djasutis]

Hi everyone. Glad to be part of the forum. Just signed up today. I was diagnosed with MS in 2010. I have been on tecfidera for approximately 45 days and love it. Was on copaxone previously and had to go off due to skin indentations (if anyone is taking copaxone watch out for this. I had no idea it was a side effect and now have indentations in my legs, arms, stomach that will never go away. I was told it's a redistribution of fat). When I first started tecfidera I experienced flushing for about an hour after taking tecfidera that would go away as quickly as it came on. I also experienced welts and itching but they were not consistent. Sometimes I'd get them right away and other times it would be a couple hours after taking the med. My doctor prescribed tramadol which helped but figured out it was best to wait it out rather than add another medication to my growing list. I think I am a little more fatigued than usual but it's hard to tell because I am always fatigued and with the heat can't be sure it's the med. I have been running a low grade fever and bloated all the time. Anyone else experience the fever. Also, this may sound like a joke but its not - I noticed an increase in my breast size. Women will know what I mean when I say they feel like when I was pregnant (I'm too old so - no I am not pregnant). Looking forward to being a part of this forum my fellow MonSters.

[Ladymac]

Hey DJ,

I had the same experience with Copaxone. How long have you been off Copaxone?

The reason I asked is because I have been off 3 yrs and the indents don't seem to be there anymore on me.

My experience with Tecfidera is I have more energy. In fact, my brain tells me I can do more than my body is used to doing. I am working on reconditioning since I had become too sedentary so I am swimming and stretching in the water which helps take the pressure off my back and I am rebuilding muscle tone.

I had a 6 month period of time that I had a low grade fever, before starting Tecfidera. I found out I had a UTI which wouldn't go away, had to go on meds for 30 days (Macrobid) to get over the UTI and to keep from getting again. Not everything is MS, so it was a hunt to see what was going on. I am not familiar with the symptoms about a fever or breast size increase (Gosh, I hope not, already top heavy )

A year and a half ago during the UTI debacle we did blood cultures and found out that I had MRSA and had to treat that too. I would recommend you get your PCP to run tests to make sure there isn't something else going on.

Welcome to the Board!

[tulip2bunny]

Today is day 11 on the Tecfidera. On day 7 started noticing stomach cramping and was very nauseated, day 8 and day 9 were worse, on day 10 I was vomiting all day. Has anyone else had this kind of experience?

[Nat511]

Started Tecfidera 14 days ago. It's been really good with very mild flushing, some chills... But yesterday started in with the upper abdominal pain. Anyone find a way to alleviate it? Hoping it will go away as my body adjusts!

[Ash3]

I have had every side effect there is except throwing up. Wanted too however, but didn't. Oh yea no itching or rash but everything else. I am sticking to what Ladymac recommended and go day to day and it does get better. No support from my doctor so I am going to redo all of that.However, listen to Ladymac because she has been a lifesaver for me. Started Tecfidera May 15. Ash3

[Nat511]

Hey All,
Days 1-7 I only had flushing once. Days 8-13 I had flushing once thinking I was doing pretty good. Then hit days 14-16. Upper abdominald Pain, severe gas bloating, nausea, and this morning low grade fever and vomiting. Anyone else have a fever?

[Nat511]

Today is day 11 on the Tecfidera. On day 7 started noticing stomach cramping and was very nauseated, day 8 and day 9 were worse, on day 10 I was vomiting all day. Has anyone else had this kind of experience?

Yep, that's what's been going on with me. Today a low grade fever. I'm on day16 and planning to stick it out

[Ladymac]

Nat and tulip2bunny,

Please check out my Topic on this site on how to Minimize side effects:
http://www.thisisms.com/forum/tecfidera ... 22462.html


Many of us are having success with the timing of when we take the meds and the diet.

Also, if you can take Aspirin, we are taking a full enteric coated aspirin see the post about that too.

I have always learned that MS is considered to be an auto-immune disease which means we are more sensitive to picking up germs and infections. Not everything is MS, I have a humorous post topic about that too.

http://www.thisisms.com/forum/tecfidera ... 22419.html

Tecfidera has 24 hour Advice Nurses that are trained to answer questions about the MED 1-800-456-2255. If you haven't already, you can sign up on their website, http://www.tecfidera.com where you can have more resources for information. Biogen does an amazing job with all of the support for each of the medications. I would recommend calling that 800 number above and feel confident that you will be getting the best advice.

Good luck, and Better Health to you both. I feel sad for you that things started out rough. I can tell you I am going on my 3rd month and the side effects for me have gone as long as I eat correctly and hydrate; especially in this heat/summer time when heat and humidity can complicate things. I also drink Gatoraide G2 (that is the less sugar/calorie) to keep replacing electrolytes I sweat out in this heat and humidity and lots of ice water.

Blessings to you Both.

[SeaSwallow]

I was advised specifically to eat with the pills to avoid some of the nausea. I only started this treatment today and I took it with a glass of Almond milk. No nausea but its prob too soon. I am getting the rash and some itching, confined to hands and lower arms at present. I started on titration dose for 7 days and then to full. I am hoping I will tolerate I will try and post as I go along. Its useful to see everyone else's experiences.

[Ladymac]

Almond Milk will not be enough of what you need for the absorption of the new medication based on the experiences of many of us that have been on it for awhile.

Please read my post about the timing of the medications and the diet that needs the Protein, Carbs, FATS for absorption.

So far close to 100% of people that I have spoken to and on this site have learned all the same, the full meal is absolutely necessary.

Please check out my thread on this site and what others have said on it regarding the diet, etc. Hopefully our experiences will help others starting after us. We aren't doctors, we are all MS Folks trying to figure this out as we go along.

http://www.thisisms.com/forum/tecfidera ... 22462.html

Good luck,

[nowornever]

Dx with RRMS in 2003, 51 years old, male. Stopped Avonex (2 years), REbif (3 years), Copaxone (3 weeks) due to intolerable side effects, either liver issues (Avonex), neutralizing antibodies (Rebif) or skin reaction (Copaxone). On 3rd week of Tecfidera. For me the flushing feels more like pins and needles in my face and upper body, as others have described. The worst side effect for me is the nausea. I didn't notice it at all on the starter dose (2X120MG) but it has been persistent since starting the 2X240mg dose about 2 weeks ago. Hoping it goes away soon. In the meantime have found cannabis works amazingly well for the nausea (I can understand better now how cancer patients undergoing chemotherapy might benefit from cannabis for nausea). Problem is the 'high' side effect of the THC which I can't take while I'm working. Perhaps a cannabis strain higher in CBD than THC would be appropriate. But for nausea in the evenings that makes it hard to sleep, it works amazingly well! I'm hoping all the side effects go away over time.

[vynderma]

I started two weeks ago and experienced a couple of days very mild intestinal discomfort. I had a little flushing last night - I couldn't feel anything, but, in the mirror, noticed that my ears were red.