Starting Tecfidera

[Cat Dancer]

I haven't been here for awhile.

Instead, I was hospitalized for 2 weeks from mid to the end of April, then home for 2 weeks, then back in for 3 weeks. I got out on May 31, and have managed to stay out, for now. This was the first major exacerbation I've experienced in the last 20 years....and came 3 years after my doctor encouraged me to get off Betaseron. I greatly regret that decision. I think that if I had stayed on it, I would not have had this exacerbation.

I am significantly weaker than I was before things started falling apart. It is a major struggle to stand and transfer. My bowels and bladder had pretty much shut down before the first hospitalization, and while they are working now, they are not working consistently or dependably. I am dealing with extreme fatigue -- I'm "good" for about 6 hours a day, and then need to nap. My vision is significantly impaired. During the worst time, my eyes were not tracking, my vision was so blurred I could not see to read, bright lights were painful. That has improved, but my vision is still blurred. My voice was weak, I was having great difficulty swallowing.

At any rate, while in for the second time, my new neuro (first one I've seen in 20 years, too), suggested I start on Tefidera, taken 2/day, a capsule. I am waiting for the med to reach me. It's sent by mail order, and the first shipment is supposed to be arriving today. I'm hoping that, over time, I'll more fully recover from this exacerbation...

[agate]

So nice to hear from you! But what a shame that you've been laid up in a hospital. That's just not right at all.

No point in regretting stopping Betaseron, really, though, is there? You might have had the exacerbation even if you'd still been taking it. Who can say? And your quality of life might have been improved a bit because of not needing to do the shot and put up with getting and keeping a supply of it. All of that effort in taking regular shots adds up to a slice of one's time and energy.

Or at least I noticed a huge amount of free time that was suddenly mine after I stopped Avonex, and again after I stopped Copaxone.

That can be nice if you're slow at doing everything anyway and so don't have a lot of free time.

I hope you'll have good results with Tecfidera. I'd be really interested in knowing how it goes--

How are your cats?

[SRKW]

So why did you Stop?

Hi Cat Dancer,

So sorry to hear about your setback. I hope your recovery is fast.

I am curious why your Dr. had you stop Beta. I have been on Avonex for 15 years and considering stopping when I reach the age of 65 (right now I am 62). I have been stable for about 12 years.

This was the plan my Neurologist suggested, based on my history and my late menopause. It is her belief that menopause can stir things up a bit, so she wanted to be sure I was done.

Anyway I was just wondering what your Neuro was thinking when they suggested you stop.

Welcome back, I remember you quite well. You share the same wedding anniversary date as me and my hubbie. In addition I wish you good health.

SRKW

[Cat Dancer]

Hi Cat Dancer,


I am curious why your Dr. had you stop Beta. I have been on Avonex for 15 years and considering stopping when I reach the age of 65 (right now I am 62). I have been stable for about 12 years.


SRKW

It was a general practioner who suggested I stop - for the same reasons you mentioned here. I had not experienced a major flare for over bl15 years, was past menopause. The thought was that all was stable. Not. ,I'm now 66.. The new neuro is putting me on the drug, despite age, length of diagnosis (30 plus years), hoping that I won't experience another flare any time soon.

[SalpalSally]

Shees Cat, just when you think things have reached a platteau
for you, All heck breaks loose. So sorry, hope TEC works out
for you, and you become your old cantankerous healthy happy
self again.

I had one of those unexpected nasty exacerbations around TG
time 2011. So even after you think you are safe in SPMS land,
It can raise it's ugly head. Stay strong, do your daily PT & OT
exercises and get thee better.

[stillstANNding]

Good to see you Cat and glad you are improving.

I have two friends who both have been told that they don't have to take their injections anymore. Both are over 65. One is seen at MGH and one in another un-related Boston teaching hospital. Neither got the "why" of it.

I wonder if we missed something in the research??
ANN

[Jeanie Z]

:) Hi everyone. Cat it is good to see you back on board. A couple of times I thought maybe you had posted and I missed it. I'm sorry you are having a flare.

I have been on 4.5 mg of LDN for over 13 years and I have had no new symptoms and no further progession since starting LDN. I was on Betaseron 5 years and Avonex two years and got worse on both. I am 72.

Info on Only registered and activated users can see links., Click Here To Register... I printed and took to my primary and got the RX. Good luck. Keep us updated please. Jeanie :)

[SRKW]

Given me food for thought

Thanks Cat Dancer,

You certainly have given me an honest and direct answer. Makes me wonder if anyone really knows the natural course of MS.

I of course have wondered if the Avonex is what has kept me stable. Or its just that my case was mild and limited.

I was looking forward to stopping the shots, now I must rethink that notion.

Thanks

[Cherie]

Similar position as you Cat. Went off Rebif after 6 years because of chronic UTIs and was on Cytoxan every 2-3 weeks for 25 months. I was told that would reset the immune system and I could expect to be symptom free for the rest of my life. This...mostly because I was post-menopausal. It has not been two years since the Cytoxan (port is still in and doc was considering restarting it) when I had my first relapse in three years in March. Mostly recovered by the end of May but if I am honest, this is the worst I have felt in probably 10 years.

My doc ordered Tecfidera on June 20. My insurance declined it as it is not yet in their formulary. On July 2, I was told that I qualified for free drug till December 31, 2013 while Blue Cross got the med in their formulary ($5400/month).

Today I called again to check on it and it had been "lost" in the holiday shuffle. They told me an incident report was being filed. They also told me that I should not have to be calling to get the med...my Dr's office should be doing that. Long and short...they are fast tracking it and I should have medication tomorrow delivered to me.

I would be interested in hearing other's stories of the attempt to obtain a newly approved drug and how successful or difficult it has been.

Cat, I hope that this is an answer positively for you.

[Cat Dancer]

So, it came on Friday, and I started Friday night. They start you off with a half-strength for a week, then full strength. I haven't moved to full strength yet. The major side effect -- flushing and feeling hot -- I definitely am experiencing. Hasn't helped that the weather has been unusually hot and humid, too. Bottom line: I'm not feeling particularly well. Don't know if it is because of the drug, or just "because". Hieaving bladder problems. My *usual* bladder problems have been retention. This time it is incontinence, particularly at night. Such is life with MS.

Still have a visiting nurse coming -- in fact she's due here in an hour. I'll tell her and see what she says. Probably not much: she hadn't heard of the drug when I told her about it....

Cherie, I didn't have a problem getting it, other than a bit of a delay from when the doctor first prescribed ite and I first heard from the company. They called to tell me "we didn't expect such a demand for it,so there was a shortage, but we're caught up, now..." My insurance is covering the bulk of the cost, but I am paying $35 / month.

[Cherie]

I spoke with them again today and asked what, if anything, we as persons with MS can do to facilitate the process. Pamela at Active Source said they have had a few applications that came in from the doc that had already been prequalified with insurance and those only took two to three days to process. If prequalification showed that the drug was not in the formulary for the company and there was a denial and the Dr's office initiated patient assistance program, it took 2-3 days to get the drug to people. However, if the office sends in the referral and nothing has been done by them to streamline the process it can take up to 4 weeks "on average" to get the med once it is ordered.

Mine will not arrive today because, despite being told yesterday that it was fast tracked and I would have it by this afternoon, The order did not actually go to the pharmacy till this morning and would not be processed until after 2:30 PM ET today.

Cat,
I asked about symptom management and they said that the patients who took med with food reduced the flushing by 25%. I asked if that meant they flushed 25% less or 25% of those taking med with food no longer had the problem. They said taking med with food meant that some who would have had flushing do not. They also said taking a baby aspirin with med helps some people with the flushing intensity and occurrence. Don't know if you were told these things or not.

[Pegakafarmgirl]

Cat's are suppose have 9 lives,,,Cat,, I am so sad this is happening to you,, dang,, life sucks you down sometimes,,you hang in there tough,, and do what needs to be done,,

[Gabriella7]

New Neuro's Explanation

Here is what the new neuro said about age and MS. After one gets older MS tends to get less aggressive because our immune systems slow down and are not on overdrive. He was only interested in testing for MG with a nerve conduction test and when queried told me just because my antibody test came back negative doesn't mean I don't have MG any longer and the fact that it was positive 2 years ago doesn't necessarily mean I have MG! Go figure that one out!!!

I was not overly impressed with him as he did not even require me to give him a written history which I consider would be important information if one is trying to treat a patient. He did ask me to bring 2 previous MRI's and I brought one from 2005 and one from 2009 which he said "for a person of my age looked like most of his patients of my age who do not have MS". The written report (I didn't show it to him) from the MS specialist indicated that I had moderate/severe lesion load with lots of white matter disease. He dismissed my MS diagnosis because I have never had a spinal tap. He is in general neurology and the labs indicated my A1C is elavated at 8.1 so the numbness and pain must be from the diabetes (according to him) and the white brain lesions have a vascular cause.

He gave me samples of Cymbalta to try for the nerve pain. Do I go for a 3rd opinion and more tests?

Gabriella

[Jeanie Z]

:) Hi everyone. Gabriella that doctor sounds like a cover your a-- doctor and all his diagnoses were maybes. I think you need to find a MS center doctor and maybe a MG doctor too. I really dislike the run around many neuros give patients.

I hope you get some real answers soon. Let us know how your service for your husband goes. You are in my prayers. Jeanie :)

[Gabriella7]

I thought he was going to be my MG doc as his profile info on the office website indicated he is interested in MG and he is local. Another thing he said which I found to be unusual is that most of the patients who come into his office for symptoms of MS are in their 20's-30's. As most of us who have lived with the symptoms since we were in our 20's-30's know....doctors did not have any treatments for MS until mid 1990's.....and did not have the diagnostic MRI until later. He is still wet behind the ears and evidently doesn't need another older patient as he told me on the first visit that I was the oldest patient he has seen.

If he had bothered to even take a history he would have seen that my symptoms have been around since I was age 29. I'll stick with my MS specialist at the MS Center and forget about finding a local neuro. It is only a 45 minute drive and they have my history going back to age 29!

Hopefully, I will not have a MG crisis (breathing problems) and if I do I will go to the other hospital and not the local one. There are no MG specialist here in the south only up north. It is a rare disease so there is no money to be made with so few patients.

Gabriella