Side effects

[Ladymac]

Greetings momofda,

Please check out my Post on this site regarding the side effects and some simple changes to diet that may help you, it helped many of us. http://www.thisisms.com/forum/tecfidera ... 22462.html

Good luck,

[Trevvian]

Hi,
I'm new here, new to MS (just diagnosed 7/13) and new to Tecfidera. Decided on it because it's oral, seems to be fairly effective from the little we know about it yet, and has a reasonable side effect profile.

Just wanted to post a positive experience with the side effects. I've been following LadyMac's advice on diet, asprin & OTCs and haven't had any side effects at all to speak of. Had a brief encounter with hives for a few hours one evening, but that could've been unrelated. The only thing I think I did wrong was taking Zofran proactively for possible nausea. It seems to have caused constipation & bloating. Had a pretty icky night last night with it, but I took an OTC & it seems to be better today.

I'm on day 5, so we'll see how it goes when I up the dosage. But so far, so good. Thank You, LadyMac & all the others who've posted tips! I suspect you saved me some misery.

Trevvian

[jduncan1321]

Hi,
I was diagnosed two years ago and I have just recently switched from Copaxone to Tecfidera. I have been experiencing the stomach cramping that seems to be very common but my head has also been feeling very weird. Is anyone having trouble sleeping since they have started the Tecfidera?

Thanks!
J

[Ladymac]

Hello jduncan,

I was on Copaxone twice during all my therapies. You will find Tecfidera amazing.

Regarding the stomach cramping, etc., please read my topic on this website about Minimizing and perhaps eliminating side effects here:

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

I think you will find the timing of when to take any other meds and the Tecfidera and the diet very very helpful.

It may help with some of the other things you are feeling as well. Please feel free to PM me.

[Trevvian]

Day 16 and I'm dying here. The first 12 days were fine, following the diet/OTC suggestions from the forum.

The last 3 have been miserable. Insomnia, fatigue, symptoms, side effects, weight gain. Fatigue is killing me...walking to meetings at work was the extent of today's exercise. Abdominal pain like I can't believe and my digestion is just a mess; I've never had issues with this, so it must be the drug. I feel like I have to go and I can't but I'm having cramps like I have diarrhea. I've gone up a pants size from the bloating.

I had been eating more carbs than normal, so I'm cutting them out again. Added some Colase, CharcoTabs, taking probiotics as of today. Have upped my water intake to nearly 3 quarts/day. I ate bacon & egg for breakfast, salad with chicken for lunch & got some tuna down earlier, but tonight I cannot swallow food...literally, I'm gagging. I know I have to eat to keep this pill down, but I don't think I can do it. I think I'm just going to take it and let the chips fall where they may. I don't think I could feel worse. Either vomiting or diarrhea would be a relief.

I'm not trying to whine, I'm grateful for no injections. Just want to let people know my experience. I'm going to stick this thing out for at least 90 days when I have my next blood test. My lymphocytes are already down 25%, so I want to see what will happen with that before I give up because of stomach pain.

Will implement any good suggestions & report back!

[Ladymac]

Hi Trevvian,

So sorry you are having such a hard time. Hopefully you have a MS Neurologist Specialist at an MS Center. I would recommend you call him/her and see if you can talk to them or see them. What other medications do you take? Morning, Afternoon and evening? Perhaps there is something going on with the combo of medications.

Did you have GERD (Gastric Reflux/heart burn issues) before taking Tecfidera? If so, did you take anything for it? How often, what is it?

I wouldn't drink any carbonated beverages to make things worse.

Feel free to PM me your answers so that it isn't on the Board here if you want to.

Blessings,

[Trevvian]

So sorry you are having such a hard time. Hopefully you have a MS Neurologist Specialist at an MS Center. I would recommend you call him/her and see if you can talk to them or see them. What other medications do you take? Morning, Afternoon and evening? Perhaps there is something going on with the combo of medications.

Did you have GERD (Gastric Reflux/heart burn issues) before taking Tecfidera? If so, did you take anything for it? How often, what is it?

I wouldn't drink any carbonated beverages to make things worse.

Feel free to PM me your answers so that it isn't on the Board here if you want to.

Thanks for the response--it's helpful to know I'm not alone.

I did talk to my neurologist & he just said to keep doing what I'm doing & let him know if it hadn't settled down in a week or two. Which is good sound advice, just not very helpful.

Here's what I'm taking regularly. In addition, I have Zofran & Gabapentin PRN, but I haven't taken either in 6 days. The neuro said all of these things are good when I shared it with him. I've never had stomach or GI issues before, so nothing for that.

Breakfast

• 1hour ahead (7:15) 325 mg aspirin
  Woman's Daily Multi-Vit
  200 mg Alpha Lipoic Acid
  4000iu vitamin E
  Super B Complex

Lunch

• 250 mg Cephlaxin (abx for acne)
  1000 mcg chromium picolinate
  2000 unit Vitamin D
  200 mg Alpha Lipoic Acid
  100 mg CoQ10

Dinner

• 1 hour ahead (5:30) 325mg aspirin
  200 mg Alpha Lipoic Acid
  125 mg Simethicone
  240 mgTecfidera

Bedtime

• 5mg melatonin
  1000 mg Fish Oil

Any helpful hints would be appreciated! I have been eating more carbs than normal the last couple weeks, thinking it was more important to get food in my tummy than worry about my macros, but maybe that's contributing to this?

Thanks!
Trevvian

[newday]

Day 6 for me. I've taken the advice found here and so far minimal side effects. I'm not a get up and cook breakfast kind of a girl and prefer to stay away from most premade foods. I made a quiche to last all week. Baked Frozen pie crust, 1/2 C cheese, 6 eggs beaten with 1/2 C milk, 6 precook sausage links heated in microwave and cut up, salt and pepper. Bake 375 40 minutes. I've been heating up a slice each morning! Just thought I'd share.

[Ladymac]

NICE! We cook on the weekend. I have been able to back off on the morning breakfast now in month 4 to drinking a Boost with Extra Protein shake, coffee, juice, etc. during the week. Thanks for the recipe! Good health to you!

[Trig56]

I am new to this site but felt compelled to post after reading some of the other posts regarding Tecfidera. I have had MS for 34 years and have been unable to remain on older meds for any length of time. I started Tecfidera in April as soon as it was released. After a week, GI symptoms subsided. I continue to have flushing symptoms but not daily. My daughter worked in MS research last summer. They told patients to take a baby aspirin before taking the med. The intention for giving me this drug was to try and slow progression as I have secondary progressive MS. I think maybe it has done that as I was having difficulty doing the length of my routine dog walk. I am now able to do it. I have noticed an extreme intolerance to heat and the sun. When the sun is out I feel like it is burning through my skin but it is not and it is gone when I am not in the sun. Also, my hair has changed texture. It is much curlier and frizzy! I have been looking for mention of any of these side effects and found none so I thought I would post to see if others may have the same experience. I am a nurse so I could mention something else I have noticed but do not know if it is related to the med or my age. Doc says it is not but in my opinion it is too early to tell. I have found that I have an abnormal extra beat (PVCs) that I did not notice before. I notice it at night.

[Fifer44]

I am new and just registered so I could post my experience. I stated the meds on Aug 20 and as of this past Friday I was told to stop taking them after I came out in a rush (hive like) and have unbelievable itching. I had some itching or a prickly sensation followed by flushing in the beginning but this is different. If I scratch welts appear on my skin and hives. This is an uncommon side effect - or so they tell me. Has anyone else experienced this? I was just into my fourth week and the bad side effects were really decreasing so I thought I had made it through and then this. I had the flushing, stomach pain, dry retching and one incident of vomiting, no appetite, bad taste in my mouth and a sick to my stomach feeling but I had held on...now I have to stay off for 5 days and then reevaluate and either start or go to an allergist.

Any thoughts?

[Trig56]

I just responded to someone else regarding this issue. I have had the itching issue with the hives for over a year which finally led me to an allergist. My neurologist said it had nothing to do with the treatment which was NOT Tecfidera but chemo and IV steroids to slow the progression. I have had MS for 34 years. The allergist says I have dermatographia which is an autoimmune problem He told me to take Allegra, Claritin or Zyrtec ( can't take that one over due to fatigue)). Thankfully, it has eliminated the problem but I have been unsuccessful going off of it. He says it may be a lifetime issue. I am wondering if it has helped with potential side effects of Tecfidera. I do not take aspirin and have only sporadic flushing issues.

[Ladymac]

I am new and just registered so I could post my experience. I stated the meds on Aug 20 and as of this past Friday I was told to stop taking them after I came out in a rush (hive like) and have unbelievable itching. I had some itching or a prickly sensation followed by flushing in the beginning but this is different. If I scratch welts appear on my skin and hives. This is an uncommon side effect - or so they tell me. Has anyone else experienced this? I was just into my fourth week and the bad side effects were really decreasing so I thought I had made it through and then this. I had the flushing, stomach pain, dry retching and one incident of vomiting, no appetite, bad taste in my mouth and a sick to my stomach feeling but I had held on...now I have to stay off for 5 days and then reevaluate and either start or go to an allergist.

Any thoughts?

Hello. Sorry you aren't feeling well.

Are you on the starter pack at the 120mg twice a day?

Please try the diet protocol and timing of medications and the whole aspirin (if you are able to take aspirin) 1 hour before taking our Tecfidera as stated in my starting post on this site:

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

Many of us had one or two itchy sensations and we took benadryl at bedtime and we were good to go. We aren't doctors or nurses. We are just like you, with MS and started before you on this new medication with wonderful results.

I hope you are being followed by a Neurologist at an MS Center. they should have been able to give you support that there are recommendations regarding the type/kind of food that you need to eat in the beginning when taking this medication in order to minimize GI issues.

Please try it for 3 days and let us know how you do. You will feel gassy in the beginning, but as long as the medication is taken with the proper amount of Protein, FAT and CARBS for help in absorption, many of us were able to do well. After a couple months in you will be able to change things up with your diet.

Blessings,

[Fifer44]

Ladymac

I was on 240mg as I was into my fourth week. The nurse from Biogen has been in touch as well as nurses from my MS Clinic and it was my neurologist who said t stop the drug right away and we will reassess. I was just wondering if anyone else had experienced the same reaction with the itching. Like I say, I itched in the beginning followed by flushing but it was more of a prickling sensation. Other side effects were virtually gone before I experienced the hives and welts - I took an aspirin one hour prior to my meds starting in the 3rd week which seemed to help over all - I did not change my diet at all (recently lost a lot of weight and could not bring myself to change what I am doing right now so managed to get through without dietary changes). Today I am still itching BUT mostly before bed and first thing in the morning. We will reassess tomorrow and take it from there...btw, glad I found this site! Great place to come and vent, share, find into and just understand and be understood by other same boat!

Cheers!

[Ladymac]

Fifer44,

I hope you are feeling better. Your weight may not be as important as having the food for the absorption of the medication which will minimize and in some people eliminate the side effects altogether.

With that said, By the end of the 2nd month many of us were able to pull back on the breakfast plan and go to Yogurt, cereal, fruit, that kind of thing. But in the beginning on the 240mg twice a day, if you are having these side effects, the protein, fat, carbs, all are needed for the proper absorption and to buffer some of the acidic effects most of us had.

Good Luck!