Starting Tecfidera

[lawnerd]

You have made me hungry for corn on cobb too!

Have you tried microwaving the corn with husk still on? I take the outer husks off, leaving about 1 layer of husks. Wrap ear in a paper towel. Microwave 1 ear about 4 mins [depends on strength of microwave]. If cooking more than one ear at same time, have to add some time. Again, how much to add depends on the microwave. Let corn cool off enough to handle, then remove husks and silks will come right off very, very easily.

There is a UTube video showing a guy doing things slightly differently from what I do. Once his corn has cooked, he just sort of gives the cobb a shake and the ear of corn pops out one end of the husks and it is totally clean, not a silk on it. Very cool.

Glad we can talk about something besides our @#% MS experiences.

I am still waiting to hear from someone about starting the Tecfidera. I have an out of town, multi-day trial coming up the end of August. Based on y'all's experiences with the T, even if it arrives sooner, I am going to wait until after that trial to begin taking the T.

Have a good week,
lawnerd

[agate]

Cat, any idea what's bringing on the esophageal spasms? I recall you mentioned something of the sort years ago, and it sounds miserable. "Just" MS?

Maybe the Tecfidera will help to stop them? You say you don't expect any symptom relief, but a person can still hope for some unusual beneficial effects....

[Cat Dancer]

Agate, the spasms are probably tied to MS. Only "treatment" anyone has been able to propose is what I already try to do -- eat slowly, chew thoroughly, only take in small bites at a time, eat with lots of fluid (usually water for me). I suppose if it got way severe, I'd have to move to a soft/liquid diet.

What happens is that food gets stuck half-way down. Not enough movement of the esophagus to get the food all the way to the stomach. So it gets stuck. If I don't eat anything else, eventually it will dissolve and find it's way to the stomach. But if I don't realize there's a stoppage and and keep eating, it'll just plug further. And then, everything just backs up.

In the meantime, I start to belch, and great clouds of gas will bubble up. The digestive juices go into overdrive, trying to dissolve the plug. Sometimes, if it's small enough, that'll take care of it. More often, everything will just come "boiling" up and out, uncontrollably. It's unpleasant, painful (the esophagus contracts and expands, trying to move the plug), messy. For me it most often happens when I'm eating meat, like steak, or solid pieces of meat like that. And if I eat too fast, or don't pay attention to chewing thoroughly. I can go for several weeks without any issues, then it'll happen several times.

Anyway, when I was in the hospital I asked about it again...only to be told what I already knew.

[agate]

I hate to think what unpleasant tests you must have had to go through just to find out what was going on--and after all that, no remedy was forthcoming.

Would giving up on eating meat be an option? Maybe stick to ground meat, or is that a problem?

Must be a huge unpleasant nuisance for you. Not fair, not fair. Does this disorder have to interfere with everything, even EATING?

[Parsi]

Agate, the spasms are probably tied to MS. Only "treatment" anyone has been able to propose is what I already try to do -- eat slowly, chew thoroughly, only take in small bites at a time, eat with lots of fluid (usually water for me). I suppose if it got way severe, I'd have to move to a soft/liquid diet.

What happens is that food gets stuck half-way down. Not enough movement of the esophagus to get the food all the way to the stomach. So it gets stuck. If I don't eat anything else, eventually it will dissolve and find it's way to the stomach. But if I don't realize there's a stoppage and and keep eating, it'll just plug further. And then, everything just backs up.

In the meantime, I start to belch, and great clouds of gas will bubble up. The digestive juices go into overdrive, trying to dissolve the plug. Sometimes, if it's small enough, that'll take care of it. More often, everything will just come "boiling" up and out, uncontrollably. It's unpleasant, painful (the esophagus contracts and expands, trying to move the plug), messy. For me it most often happens when I'm eating meat, like steak, or solid pieces of meat like that. And if I eat too fast, or don't pay attention to chewing thoroughly. I can go for several weeks without any issues, then it'll happen several times.

Anyway, when I was in the hospital I asked about it again...only to be told what I already knew.

From what you wrote you had been barely eating. Perhaps this time that contributed to the problem. You needed even more time for the food to go down. I hope future attempts will be more successful.

The Betaseron and Avonex had worked well for me too. However over time I started feeling unwell in general. That's why I had stopped. Thankfully any progress that the MS may have made since then is slight and slow.

[Parsi]

BTW, Cat and lawnerd, thanks for the corn on the cob instructions.

[SalpalSally]

Hi Ya Parsnip..(((hugs)))

[Virginia]

I cook my corn on the cob about the way Lawnerd does. I just put it in the microwave while in the husk and cook it. All the corn silk just falls away. You just
can't touch it too quickly to take the husk off because it is so hot. Have not cooked it any other way since finding out about this some years ago.

[boston/maine]

All I have to add is I Hate MS

[stillstANNding]

HI Jan! (boston/maine)

ANN

[agent107]

nailbiting

gang,

doc keeps pushing tec. -- told him still cogitating -- next (last?) tysabri infusion on the 18th --

heard something about weakened gait and walking -- has anyone heard of this? does it go away or is it here to say . . that is the question (ok, one of many questions) --

i have mild gait issues, many balance issues -- hand -- vertigo --

been on ty. for 13 yrs. --

i'm not good at eating stuff -- not regular with meals -- which seems key re abdomen issues --

so, anyone heard of gait issues with Tec.? --

also, anyone have tec. for dummies answer for this -- "index value" re jc virus? here's the ccontext -- note from neuro:

"I received your lab results. As expected, again your JC virus antibody is positive. Your "index value" is 2.8. For anyone who has been on Tysabri for over 2 years, who has a positive JC virus antibody with an index value of >1.5, the risk of getting PML is somewhere btw 8.1-8.5 per 1000 patients, which equates to a risk of getting PML of just over 0.8%. This may seem small but given how devastating and potentially life-threatening PML can be, I strongly suggest we move to a different drug. We had discussed switching to Tecfidera. How would you feel about making that switch now?"

comments? (as always, much, much appreciated)

agent107

p.s. does anyone know someone who has had PML -- or has a definition for 'recovery'

[SalpalSally]

Agent, to me, after hearing all the scuttle about TEC, It would be like
jumping out of the frying pan into the fire.....scaryyyyy!

TY doesn't seem to be doing it's job, as well for you, as it does for
others and TEC is just another, more of the same, only worse drug.

I've heard that all these new drugs have a common ingredient and
remember, they're all made by Biogen!!!! Bad Vibes!!!!

a German Doctor, Dr. Jorg Shultz a neurologist at the research university in Aachen, Germany, was treating patients with psoriasis using Fumaderm©. It contains the same ingredient used for Tecfidera©, fumaric acid. One of his patients came down with PML.
He stated after Tysabri© and Tecfidera© are broken down in the body, they become essentially the same product! All of these products Fumaderm©, Tysabri©, and Tecfidera are manufactured by Biogen©! Are you surprised?

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

PPS....There really is no recovery from PML, except sometimes
you don't die.......right away.

Use you own common sense when taking these drugs. For instance,
if you are a light to middleweight woman, don't take the same doseage
as A heavy to extra heavyweight man!!!!!! I heard that it could up
your chances of contracting PML!!!

I want you all to be better, but first, do no harm Doctor..(HUGS)

[agate]

I don't know if this will be of any help but I ran across it while prowling around--"Updated Estimate of PML Risk with Natalizumab" in New England Journal of Medicine Journal Watch, May 29, 2013:

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

[Cherie]

gang,

doc keeps pushing tec. -- told him still cogitating -- next (last?) tysabri infusion on the 18th --

heard something about weakened gait and walking -- has anyone heard of this? does it go away or is it here to say . . that is the question (ok, one of many questions) --

i have mild gait issues, many balance issues -- hand -- vertigo --

been on ty. for 13 yrs. --

i'm not good at eating stuff -- not regular with meals -- which seems key re abdomen issues --

so, anyone heard of gait issues with Tec.? --

also, anyone have tec. for dummies answer for this -- "index value" re jc virus? here's the ccontext -- note from neuro:

"I received your lab results. As expected, again your JC virus antibody is positive. Your "index value" is 2.8. For anyone who has been on Tysabri for over 2 years, who has a positive JC virus antibody with an index value of >1.5, the risk of getting PML is somewhere btw 8.1-8.5 per 1000 patients, which equates to a risk of getting PML of just over 0.8%. This may seem small but given how devastating and potentially life-threatening PML can be, I strongly suggest we move to a different drug. We had discussed switching to Tecfidera. How would you feel about making that switch now?"

comments? (as always, much, much appreciated)

agent107

p.s. does anyone know someone who has had PML -- or has a definition for 'recovery'

Index value of 2.8 is as high a risk for PML as any I have seen. Certainly does not mean you will get it. I have known personally 3 people who have survived PML but not unscathed. Both are significantly more dependent than prior to the illness despite intensive physical, occupational and speech therapy.

On a more positive note: Week 4 on Tecfidera has been a bit more comfortable. Less flushing and diarrhea. Less GI discomfort and perhaps a bit more energy. But I have also developed the first UTI in three and a half years and my face, neck, back and chest have broken out in a very itchy rash. This is not one of the noted side effects but there is nothing with which I have come into contact that is new so I cannot help but think it is related to the new med. As to a hope that things with MS will start to peel back, I think that is a Universal hope as we start a new therapy. I saw it with one med almost within the first month and another after a couple of months so I still hold out hope for improvement.

[SalpalSally]

Cherie, maybe you Doc could cut back on your doseage?