Starting Tecfidera

[Cat Dancer]

Cherie, I''m sorry the Tecfidera didn''t work for you. I haven't had nearly the reactions you describe. Just some nausea and gastro problems the first week, a few episodes of " hot flashes, but then nothing much. I still am dealing with a loss of appetite, but I don't know if that is the Tecfidera or a combination of all the other meds I''m on.

I got back the blood test results from my neuro today. I still have way-too-low potassium levels, low protein levels, and low Vitamin e D levels, so I''ve increased my potassium pills, added the Vitamin D, and am working to increase the proteins. But none of these issues were caused by the Tech, so I''m still on it.

[SuzE-Q]

I remember the ABC's were originally thought to reduce 30% of exacerbations, so that was considered to prevent about 1 attack every couple of years. I also seem to remember that the accuracy of the trial results were in dispute because they found that in a year's time period, people typically didn't relapse, so it was very hard to compare 2 groups of people over a short period of time considering many in the placebo group weren't relapsing either so it was really hard to say that any lack of relapse was due to meds making any impact at all. I thought that's why trials are run for at least 2 years and not 1 year, and it takes special review for a drug to be approved and fast-tracked with only 1 year of data, because most of the study group, active drug or not, were not relapsing during at least a year, on average. Didn't I see 10 year natural history that actually showed we fared pretty well during that specific amount of time, and EDSS didn't actually change that much anyway for the first 10 years? So much old research that I only remember bits and pieces, not sure where it came from or if new info is now known.

If steroids don't alter the overall outcome and are generally only prescribed (outside of monthly pulses) for serious and debilitating attacks, no, I would not think the MS treatment was very efficacious if someone still needed regular annual steroid infusions to deal with exacerbations even while on an MS med. I guess it's true that it's all relative though, if I had multiple attacks a month and it was reduced to only 1 serious attack a year, I guess I would likely consider that quite effective too.

Cat, your early disease course sure sounds more like PPMS if you were having several attacks per MONTH and this continued. Where is the remitting when your disease was so active and unrelenting? I have had periods of time where an attack has continued, with impact on different functions over weeks, and that took months before it seem to stop and recovery (or partial) or stabilization at least has occurred. But in all my years with MS, I can't say that I've had such frequency of disease activity that I had a pattern of multiple attacks a month where new symptoms were arising over months' period and this pattern repeated itself over time. Pseudo-exacerbations, yes, where other illness, fever, heat or stress, etc. has caused symptoms to temporarily arise, but nothing that I would consider ongoing attacks over lengthy periods of time that never seemed to end. And my doctors still considered my early disease course to be active because I had frequent attacks. Nothing like what you're describing though. I know I've read that a person often seems to have a "burst" of MS activity right before they convert to SPMS. When you say you still had mild "attacks" while on beta, what do you mean by "attacks"?

[Cat Dancer]

SuzE, You're putting together a lot of research findings that may or may not relate to each other.
When I was first diagnosed with MS, the medical community didn''t make the distinctions between relapsing-remitting, primary progressive, etc. There was just MS...
I do know the difference between "pseudo-exacerbations" and actual exacerbations. I was experiencing actual exacerbations, separated by at least a 10 day period of stabilization. And no, this didn't happen EVERY month, just sometimes. The point was -- I (and many others I know of who have MS) have experienced multiple exacerbations in a year, so if we only experienced one...whether treated with steroids or not ... that would be a very positive outcome.

I experienced several years early on, of multiple exacerbations per year. Then things stabilized for a number of years, where I had maybe 2-3 small exacerbations a year, sometimes treated with steroids (the only treatment then available), sometimes not. Once I got on Betaseron in 1992, I experienced just 1-2 flares after that. The "attacks" were typical MS "attacks", or exacerbations: for me, weakness in my legs so I'd have to move from a cane to a forearm crutch, or from one crutch to 2, or occasionally to a wheelchair.

After about 10 years on Beta, having had no real attacks, I had only a slow disintegration of ability. (by the time I stopped the Beta, about 3 years ago, I could no longer walk at all. I could however stand, transfer relatively easily, bowels and bladder under control, etc. My doctor -- not a neuro -- had read some research that suggested that after that long, and at my age (around 63 at that time) and after having had MS for that many years (about 26), that I probably was where I was always going to be, that the MS had probably done all it was going to do, and I was "wasting my money" continuing with the Beta.

What happened to me after that proved him wrong. I took a dramatic turn for the worst over the last 3 years, and now over the last 5 months I've experienced at least 2 exacerbations, a dramatic decline in ability, and am heading to a nursing home.

[SuzE-Q]

I'm so sorry to hear that, Cat. I just asked here a short while ago whether MS seemed to "quiet down" after a certain point as I thought I'd read that too. No one answered me, but from the sounds of it, the answer is a definite NO. Having gone through periods of active disease, I definitely feel like I'm living on borrowed time, as because of the level of accumulated damage to this point, any further big attack could be catastrophic for me. I certainly understand why you're trying Tec, and I really hope it is successful for you. I also really hope that you can recover and heal from where you are now.

I'll be pulling for you. Thank you for sharing your story as it really does serve as a strong reminder that we need to continue to do our best to prevent as much disease activity as possible because the disease is not going into retirement quietly. Please continue to share how you're doing on Tec, ok? Thanks for the good discussion about this important topic.

[agate]

Cat Dancer, are you really serious--a nursing home for you?? If this is for real, I hope it's going to be a nice place where you will find helpful people and agreeable people--people who will treat you with respect. (And let you have access to a computer so you can keep in touch with online friends--like us!)


SuzEQ, when you say:

I just asked here a short while ago whether MS seemed to "quiet down" after a certain point as I thought I'd read that too. No one answered me, but from the sounds of it, the answer is a definite NO.

I believe I tried to answer you when you asked:

Only registered and activated users can see links., Click Here To Register...

[SuzE-Q]

Cat Dancer, are you really serious--a nursing home for you?? If this is for real, I hope it's going to be a nice place where you will find helpful people and agreeable people--people who will treat you with respect. (And let you have access to a computer so you can keep in touch with online friends--like us!)


SuzEQ, when you say:



I believe I tried to answer you when you asked:

Only registered and activated users can see links., Click Here To Register...

Yes, thanks, agate! What I meant to say is personal experiences from those here, I was disappointed not to hear how members who were in their 60's+ were doing and what their MS was up to, if it had quieted down or not.

I definitely appreciated your input!

[agate]

Sorry I didn't understand your question, SuzEQ. Your question is so important, it seems to me it should have a thread of its own. I'm sure would like to know more about others' experiences with MS over time.

I hope you'll start a thread about this.

And I see I confused you with Ikoiko in my post. Sorry about that too!

[Cat Dancer]

Yes Agate, unfortunately, at this point I don't see any other option. I can't care for myself, my husband can't care for me, we have no children or other support services. So I''m stuck.

[agate]

I'm sure you've looked into this but is hiring people as home health aides a possibility?

I've known some people with MS who've had what seemed like a workable situation with people coming in in shifts--on a 24-hour basis that would be at least 3 different people but if you get dependable, steady people this can work.

Costly it is but at least it keeps you at home where you're more likely to get the rest you need.

Nursing homes I've seen have been noisy, bustling places. Maybe at night they're quiet enough but a person needs to rest when tired, and sometimes that's in the daytime. Hard to do with umpteen people coming in and doing things--bringing meals in when you may not want a meal just then, mopping the floor, making the bed, asking if you don't want to join the crafts group, etc.

In-home attendants are a nuisance but at least you're in charge of them and how they're spending their time.

I don't know about other people's MS but for me rest is THE key, along with good nutrition. I know nursing homes are sometimes called rest homes but I can't imagine how anyone gets any rest there.

I've been in those nursing homes that accept Medicaid patients though. There are probably better ones. I hope you can find one of the good ones.

[Jeanie Z]

:) Hi everyone. Cat I hope you can find an at home solution. Or like Agate says a really good nursing home.

Since David died 2/1 I have managed by myself here in the house but nothing is really clean and I had a lady come twice to clean and she did good but I really need someone once a week to change the linens, vacuum. etc. My son is coming over every Friday morning and mopping the hole house and mowing the yard and blowing off the driveway.

My 16 year old dog has peeing accidents at night so I keep a bucket with Spic & Span and bleach in the corner so I can mop those spots. Grocery shopping is tiring and I hate cooking so I am eating a lot of those macaroni and cheese bowls you microwave. I think assisted living or a nursing home would be easier but I will try to do this as long as I am able.

So many things need doing, the roof needs pressure cleaning, the whole place could use a new coat of paint inside and out. I still get around on my little scooter but I am afraid to walk any as I fall too easily. All the furniture and drapes are over 30 years old and I am allergic to dust mites. I am praying no hurricanes come again.

My friend Peggy has gone into a nursing home and really likes it there. She had hip surgery and could not walk for ages and she is overweight. She is getting therapy there and the other day she called me and said she walked the length of the parallel bars and back. She was thrilled and called me crying and I cried too. At home she had pretty much stayed in one spot. Even transferring had become hard for her. She does not have to cook, she gets a bath everyday and she has diapers and said they are always nice about changing her.

Cat you are in my prayers and I hope the new med helps you. I do have strong faith that God knows what He is doing and I just have to quit having expectations and learn to accept what is. Jeanie :)

[Virginia]

Suz E, I probably did not see the post when you asked about experiences with the disease activity dying down after a person gets older. My own experience has been very different. I have had MS since the 1970s, but did not know that I had it at that time. Only by reading my medical records did I find out. I had had the same Primary Care Physician for 25 years so it was kind of easy. I would not see him for very lengthy periods of time and then I would go with some sort of thing that made him think I was kind of "nuts". I had numbness of three of my fingers each morning for a couple of months at one time. It would finally wear off up in the day, but I began to wonder what was going on. I had severe tightness in upper thighs, that came on very suddenly and lasted 3 days and went away. I went in one time because I was having extreme tightness and heaviness in my legs when I went for a walk. It was in my records that I felt that walking fast brought it on. I complained of fatigue on a number of occasions. I kept telling him when these spells came on it was severe and that it was not normal fatigue that I could rest up from.

Different things kept occurring, however I continued to work full time and since these episodes were sporadic nothing was ever done about them. I was never sent to a Neurologist and did not know to go myself. At about age 59 to 60 things began to ramp up and I had more things happening more often. Finally, when I was 63 years old, in 2000, I went on my own, without records, to a Neurologist. I begged him to find out what was wrong with me. I could only tell him what was happening at that time, because until I read my records (later) I had forgotten most of the rest of it. He thought I might have a pinched nerve and sent me for my first MRI of the spinal cord. Well, I was diagnosed very quickly with test being done at a rapid rate, even lumbar puncture. He immediately started me on one of the DMDs and I have remained on one since that time.

I was going on the DMDs when some of the people on here were coming off of them. Thank goodness my Neurologist believed in them. I am sure that I had already become SPMS, however I had had some optic neuritis problems and other things that were scary. I did not even have sense enough to realize that I was having optic neuritis. Things looked brown and dim at times and I had told my PCP that I was so weak my vision was dim. Thankfully, it would clear up. Since going on the DMDs this has not happened.

This is just my story. I realize we are all different, however later when I looked back at how bad I was getting so quickly the last six months to a year, for me the DMDs were the only way to go. I am at this point still living on my own, taking care of my house, myself, my shopping. I do not walk with a cane or walker, but on the other hand I cannot walk far. When I go shopping I try to go to one store at the time. I get in my car and drive to another one and let my legs rest.

When I hear that this disease does not progress after a person has gone through menopause it just makes me upset. As I said, I was 63 before being diagnosed.

We are all different, but I would not want to take a chance.

[Cherie]

Feeling considerably better 5 days off Tecfidera than at any time during the 34 days on Tecfidera.

We have recently had a couple of the folks from our MS Dream Center go into nursing homes because it was so hard to maintain and function safely at home. Both have come back home with in home support after a few months of rehab feeling and functioning better. I hope if the need is there Cat that you get similar help and improvement.

[lawnerd]

Cherie, so sorry you had to quit the BG-12. You had really worked at making it work for you.

A thank you to all of you who are sharing your BG-12 experiences here. As I may be starting teh BG-12 in a month or so, I am reading with great interest. The information you are all sharing is very informative and helpful.

Take care,
lawnerd

[SalpalSally]

Lawnerd, with your ongoing illness and weight loss, I would
think that Tec is the last thing your medical team would suggest.

[SalpalSally]

It seems like TEC is better tolerated at the lower starting dosage.
Why do they insist that you double it, so fast? That's when the
really bad sx start. A friend just started on it and says she can
all of a sudden walk. I told her, "don't let them raise your dose
too fast or too much, because that's when most people decide to
get off of it".

Some peeps have had to back down on the other DMDs. One size
does not fit all, on any med, so why is TEC different? Sheesh!!