Third med

[agapepilgrim]

Got put on tecfidera today. Tried Aubagio 6 months - pneumonia. Then Capoxone- severe body rash after 6 months. Now Tecfidera. Anyone have allergic reactions??

[MarkUpnorth]

It's been years now, 7+ since I've been on DMT's (disease modifying therapies). I went thru the ABC drugs, Avonex, Betaseron, and Copaxone, not in that order, Ribif too, and after the first few years, I had flue like symptoms for years and years. Finally, my Neuro told me to stop, as they were not helping, as he said often happens, and when I did, OMG, life became better, only because I was not suffering from the drugs and all the other drugs which were needed to fight side effects. If you're at that point, look to nutrition. I may get kicked off this site, but nutrition helped me more than all the years of DMT's. I've been relapse free now 5+ years and I attribute it all to nutrition, There is a lot out there on nutrition and auto-immune diseases, and it is catching on. My neuro also told me he does not expect me to get back into relapses, because of my age and having reached the point of relapse free. Does not mean I'm symptom free by any means, but, I'm not getting worse, and actually getting better! Now attempting other non-typical means of getting more back from this ugly disease. Mega doses of Biotin was prescribed. Not a magic bullet, but only been on it for less than a month. Bottom line for you, I was told many people become intolerant of DMT's out there. When it does, there's more you can do. I hope all those years I suffered on them did some good?

[Nom_De_Plume in reply to MarkUpnorth]

MarkUpnorth Hi, I'm wondering which diet you follow, and how much biotin? Thanks!

[MarkUpnorth in reply to Nom_De_Plume]

Diet, I use the Whals' (Paleo / Hunter Gatherer) Diet as a model, eating primarily fresh fruits and vegetables, with accents of lean meat and fresh fish. Eliminate anything processed is my goal. Where I fail, is dairy. I love cheeses, yogurt, kefir....but, in moderation. I use cheeses to accent some of my salads, (every night's dinner starts with a heaping dinner plate or extra large bowl salad). And I still will from time to time consume the forbidden items such as beans, etc., which I think believe are not part of the diet. Example, last nite's high light was along with a typical heaping dinner plate salad using 4 lettuces and red/purple kale, mushrooms, red and yellow small tomatoes, the dinner was "Grilled Burger and Fries" consisting of home made black bean burgers (actually very simple quick recipe) on Boston bib lettuce leaves, topped with tomato slices and sriracha aioli sauce, and baked carrot chips. All home made, easy. 5-10 minute prep each (for a M.S. free person, much longer for me). But I've gotten into cooking since I've gotten into healthy eating due to necessity.

The Biotin is high dose, 100mg (100,000 mcg) 3x daily. My Neuro gave me a script. The only downside is this is one really expensive vitamin! On line you can find it for $60/30 day supply, (or even less in quantity), without a script. Or you can go to a formulary pharmacy with a script which will cost much more, and insurance doesn't help. Either way, ouch! (For those of us on limited budgets due to "retirement". You can look up info on biotin and M.S. on line. It is actually in a second phase 3 trial now for progressive M.S.. I'm no expert on any of this, but, the nutritional changes pulled me out of my comatose like state I was in for about 2-3 years, and then after that adding medical cannabis when it became available in our state, vaping or edibles treats the pain and fatigue. Together, I've got a life again! A great one! Frugal, but great! Luckily this type of eating is cheap too! Veggies with accents of meat, fish, and even seafood, are cheap compared to fast and processed foods which aren't good for you.

[Nom_De_Plume in reply to MarkUpnorth]

MarkUpnorth Wow. Fascinating. Thanks so much for all of this helpful information!! You have become quite the cook!

I'm so glad to hear that it's working for you!!

I'm taking 1 mg or 1,000 mcg Biotin. Have you seen a direct benefit from taking my it? How long have you been on your higher dose? Thanks!!

[MarkUpnorth in reply to Nom_De_Plume]

It's been less than a month, so I can't really say, but the studies are all based on much, much higher doses. I've seen minor improvements? Maybe. Look up the studies. Not sure if it is because of diet, or the biotin. I was told the over the counter biotin doses where worthless by my neurologist. But as my previous neurologist for 15 years used to say, the only thing he knew of that worked immediately, are antacids. I have an addition for him. Cannabis. Kills the neuropathic pain that kept me up till early morning every night, when I was exhausted beyond being able to keep my eyes open by 9pm. The file cabinet full of failed prescription drug containers remain as a reminder of how worthless they were, not to mention how bad they probably were for my body. Again, look up the studies. 1000 mg / 100,000 mcg seems to be in all the studies. 3x daily.

[rjoneslaw]

@agapepilgrim

I've been on it for a year and I haven't had any side effects. I have actually been getting better as of today I am steadily improving along with pt

[melack01]

I've only been on it two months...so far no problems.

[SueAB]

Oh agapepilgrim , you have been really been hit hard lately. Sending out good thoughts to you for a better tomorrow!

[jimeka]

agapepilgrim just a suggestion, but why don't you have a break from all those drugs and let your body have a rest and let it get rid of the other meds you have been taking . It does take a while for the meds to get out of our system. Like I said, it's just a suggestion. Blessings Jimeka 🦋 🌈 🤗

[agapepilgrim in reply to jimeka]

jimeka i go against the neurologist advice?? I would love to but afraid to. So many testimonials of people who have. I guess because I have the death of fmy cousin's memory always before me, I don't feel clear to do that. I know what can happen without a DMT, eventhough I have current friends not taking any and all is well. Alll I can do is pray the Lord has control, for example I ran out of financiang for Cauaxoxw and didn't renew. I pray I won't get financing if it's not His will. That's all my finite mind knows to don. - trust that he is in control while I try to love. May He bless you Toddy and always

[Nom_De_Plume in reply to agapepilgrim]

agapepilgrim If it's not to painful, would you please clarify what you meant by "I guess because I have the death of my cousin's memory always before me." Did she not follow her doctor's advice, and die as a result? Thank you.

P.S. I love how you always reference your love of God in your replies.

[agapepilgrim in reply to Nom_De_Plume]

Nom_De_Plume o am 70. My cousin and I got Ms before there was a DMT. I think the first one was on early 90's. She was as diagnosed around 1978 or so. It was the rapidly progressive MS in her spine. Just s few years, wheelchair bound, them nursing home bound, then gone in late 80's. Age around 48. Sweetest girl in the world - never complained ONCE of pain or condition, just a big smile for everyone. "God!s ways are beyond our understanding. She had one son, who is about 52, and said he was having the symptoms, but not going to a doctor.

[Nom_De_Plume in reply to agapepilgrim]

@agapepilgrim Oh, I am so sorry to hear this. That must have been devastating for you. 😥

I have had neurologists tell me that MS is not fatal and then I hear stories like this. What was her cause of death if I may ask? I have heard of bed sores leading to sepsis. I don't want to be morbid but I do want to know what might be ahead.

Thank you.

[agapepilgrim in reply to Nom_De_Plume]

Nom_De_Plume it was basic combination. Immunosuppressant diseases like MS, lupus, Crohns, eventually begin to shut down vita organs. Technically, a neurologist could say she died from Kidney failute not MS. It's the MS that causes the slow deterioration of the myelin, the nerves, that tell the rest of the body what to do. I say my mother died of breast cancer, because she had 2 bouts with it and ]2nd time body rejected meds, so here kidneys began to shut down. Just like lungs do. But the underlying cause was the breast cancer. Susan's underlying cause was very rapid progression of MS that affected all her nerves and muscles. The heart is just a large muscle. It needs communication from brain central

Center to tell it what to do. I had Stncope (passing out) for :2 years and finally decided my auntonomic nervous system wasn't sending fast enough message to heart to pump , so. Kit didn't. MS in the brain is all about your brain losing its ability to communicate quickly, automatic, causing me too burn my arms non oven. Otherwise are unknown ways a body could shut down due to MS but it would say heart failure kidney failure, sepsis. MS doesn't kill you, but the symptoms sure can!!!if I had hit my head on sharp object during those days of passing out, I could have died from blunt force. But in my book, it was MS causing lack of automatic response from brain to heart. So..have faith in God, your time will come and we wil have new bodies on a clean new earth!

[Nom_De_Plume in reply to agapepilgrim]

@agapepilgrim I appreciate your comments and the details.

I too look forward to the resurrection some day. I hope I'm on the right side of the fence when it does happen so that I can enjoy it!! 😊 Lol!

If so, I invite you to a game of tag up there!

[bxrmom in reply to jimeka]

agapepilgrim and jimeka My neuro told me I didn't have to wait to switch from Copaxone to Tecfidera because Copaxone washes out of your system rather quickly.

Jessie

[Hstrychick81]

I had awful side effects from Tec. My suggestion (for what it's worth) is to watch your blood work. My white blood cell level dropped dangerously low and I was immediately removed and put on Copaxone. It's different for us all. I'm succeeding on Copaxone. I really hope Tec works for you! I'll be thinking of you!

[bxrmom]

agapepilgrim I'm sorry you are having bad luck with the different meds you have tried so far. I have been on Tecfidera going on 4 months and I have not had bad side effects. I did have some flushing in the beginning (not bad) but took a low dose aspirin to help combat that. To prevent stomach upset, I always eat something before I take my dose of Tecfidera and that seems to help keep stomach issues at bay.

Best of luck on your new adventure with Tecfidera, I hope it works for you. Please keep us updated when you can.

Jessie

[agapepilgrim in reply to bxrmom]

@bxrmom do you eat carbs or proteing or fruit or does it matter? All these problems the past month, I have so strayed for my "healthy MS food groups, I eat anything. But was wondering if I should eat toast or would my berries be enough. Thanks

[bxrmom in reply to agapepilgrim]

agapepilgrim I just make sure to eat something before I take the medicine. For the flushing, I used to take low dose aspirin approx 15 mins before taking the pill...I don't get the flushing anymore. For breakfast I usually have a bowl of cereal with whole milk. In the evening my meals very all the time from a sandwich (days I'm not too hungry) to pizza, lasagna, to roast, to goolash sp?, to hamburgers, rips, taco salad, etc. I have never been on a 'healthy' diet or MS diet.

Jessie

[Iona60]

agapepilgrim Was the copaxone the cause of the horrible rash that you went from dr. to dr. for an explanation? Why didn't anyone think of that before now? Hope it clears up quickly.

[agapepilgrim in reply to Iona60]

Iona60

[Nom_De_Plume]

agapepilgrim How is the Tecfidera working for you so far?

[agapepilgrim]

@Iona60 i did but my neurologist insisted the rash could only be at injection sites. I took him clinical trial info stating 2% had full body rash. My 4th doctor, the allergist, did the 40 patch test and it came back chemical medication and she said it was Capaxone, I had her write a letter to my neurologist!! And I quit Capaxone! Rash hasn't totally cleared up, still red on my arms, but no blisters. Monday, he started the ball rolling for Tecfidera, presciption, get aid, you know the routine, so I will have about 2 weeks for my body to rest from the terrist stuff. And the Capoxone didn't help anuway. In 6 months, the MRIs showed my MS is actualy worse. The lesions are bigger than they were, I have more brain damage on teh right side of brain; R side not communication with L side, R side brain damage (MS and bouts with PTSD) is worse than 6 months ago. My neck has more spurs, and has grown narrower, so cervical stenosis and spondylosis is worse. He seemed confused by the pitiful condition of my right side brain, when brain hasn't shrunk any. (As one of my friends said, good think you had a big brin to begin with!! - guess she was right!) When to a counselor for a inpatient mental health hospital (at the insistence of my insurance) and after hour and a half, I do not need to be admitted, just need psychiatrist to get me started on meds asap, and need to go to weekly counseling (yea, right, couldn't find one with sliding rate scale like she said it could). Going to a grief management counselfor tomorrow because that's where the assessment doctor sending me until I can find necessary help for MS/PTSD combination (AND not taking my anti-depressant, I am so mad at that doctor. I always get copies; and my sodium levels have a big fat L beside them for the past 3 years, but said they were ok, don't worry! He could have put me on a high sodium diet and I would not be in danger zone NOW. By BP is running 80's/60's, so I am in bed most of the time, but drinking lots of coconut water (garorate makes me nausea!) and high sodium foods. Well, enough venting. It is 5 am. Never been to sleep, not much ue trying now. Must leave for counselor in 6 hours. Guess I should try to sleep! Anyone out there have negative reactions to Tecfidera??????? Just to clarify, though, I still feel the covering of God's love, even if my brain is sick, I know He knows, and if I can't feel anthing else positive, I know Jesus is holding my hand.!

[Iona60 in reply to agapepilgrim]

agapepilgrim I am so sorry that you are going through this, but so glad that you went back to your allergist. I was on copaxone for 10 years. Once or twice I got hives. and they were not only at the injection site. They went away within 24 hours. My neuro has said that Copaxone doesn't work for everyone. It is one of the least effective meds, but it also (usually) has no side effects. I'm praying that the Tecfidera will work for you, very quickly, and without incident.

[Mrkk in reply to agapepilgrim]

I took tecfidera for 2 years. I would get heat flashes. It's when your arms neck or face will get red and hot. 81 mg aspirin before the medication will get rid of the hot flashes. Also eating before you take the medication can help. If you are a vegetarian then you need to eat something like oatmeal. Other than the hot flashes the medication seemed to work. But eating nothing but vegetables no meat no gluten no starch or processed foods actually is what got me off of the tecfidera.