NO DMTs?????

[GinnyRuth]

Tecfidera lowered my WBC which led to Shingles. My neurologist said this was happening to some of his patients on Tecfidera and that I should go off of it for awhile. Instead, I decided to go off of it FOREVER (the hair loss was also very alarming in my case). Since then, I have never gotten back on Tec or any other DMT (for about two years?). When I am on a DMT I wonder what the long-term side effects will be (but as I age, "long term" is getting to be less of a consideration. On the other hand, by not being on a DMT, could I be damaging my body unnecessarily (even while I am asleep?)? I may just go with a yearly MRI and let that be my guide for now (or Tarrot cards, tea leaves and a crystal ball...I haven't made my mind up yet!). The longer I live with MS the more wishy-washy I am getting about taking DMTs. I am longing for a bigger pluck for my buck. These questionable treatments have been a source of frustration since day one. I am sounding like a broken record...second verse same as the first. Sorry...

I understand what you mean about getting wishy-washy. Maybe we need to get a "Magic 8 ball", lol

[Wonderdog lady]

Shingles!

Tecfidera lowered my WBC which led to Shingles. My neurologist said this was happening to some of his patients on Tecfidera and that I should go off of it for awhile. Instead, I decided to go off of it FOREVER (the hair loss was also very alarming in my case). Since then, I have never gotten back on Tec or any other DMT (for about two years?). When I am on a DMT I wonder what the long-term side effects will be (but as I age, "long term" is getting to be less of a consideration. On the other hand, by not being on a DMT, could I be damaging my body unnecessarily (even while I am asleep?)? I may just go with a yearly MRI and let that be my guide for now (or Tarrot cards, tea leaves and a crystal ball...I haven't made my mind up yet!). The longer I live with MS the more wishy-washy I am getting about taking DMTs. I am longing for a bigger pluck for my buck. These questionable treatments have been a source of frustration since day one. I am sounding like a broken record...second verse same as the first. Sorry...

Shingles! Been there done that at the age of 21 long before I was diagnosed. It was the most painful thing I ever experienced....thus far at least. Sure don't want to experience that again.

After starting and failing several meds, I am on my second year with Tecfidera. So far so good. I have only had one relatively mild relapse in eight years. It never occurred to me that low white blood count could cause you to develop shingles, but it makes sense.

My first DMT was copaxone and I remember deciding after two years that I would take myself off Copaxone and wait for oral medication. After three months of going COLD TURKEY, I finally confessed. I asked my neurologist if he thought not taking the meds would increase my chance of winding up in a wheelchair. His response was immediate. He said "It is your choice, but If you stop taking your medication, I guarantee you will end up in a wheelchair!" If that was meant to scare me it worked. My feeling at this point is I will continue taking some type of oral DMT as long as my body tolerates it. I am not sure I could ever go back to injections at least not willingly.

Wishing everyone the best and good luck in whatever decision you make!
Lynn

[Thinkimjob]

I am not too fond of the neuro "do what I say, or you'll wind up in a wheelchair" stuff.

Whatever they are offering is not a cure, just a heavier foot on the brake.

(Just typed that last paragraph, read it again, spell etc checking, quite like it.)

I've done what they said to do from the start, and I can't walk out of sight on a dark night. I got 14 years instead of ten.

Take the dmts. There is really no other option, but you are buying time, not a cure.

Maybe if you buy enough time there will be a cure, or a repair treatment. Maybe not.

I say that as an Australian where my $15,000 a year drugs cost me a dollar a day.

And only two things are certain, as someone said, death and taxes.

[GinnyRuth]

Shingles! Been there done that at the age of 21 long before I was diagnosed. It was the most painful thing I ever experienced....thus far at least. Sure don't want to experience that again.

After starting and failing several meds, I am on my second year with Tecfidera. So far so good. I have only had one relatively mild relapse in eight years. It never occurred to me that low white blood count could cause you to develop shingles, but it makes sense.

My first DMT was copaxone and I remember deciding after two years that I would take myself off Copaxone and wait for oral medication. After three months of going COLD TURKEY, I finally confessed. I asked my neurologist if he thought not taking the meds would increase my chance of winding up in a wheelchair. His response was immediate. He said "It is your choice, but If you stop taking your medication, I guarantee you will end up in a wheelchair!" If that was meant to scare me it worked. My feeling at this point is I will continue taking some type of oral DMT as long as my body tolerates it. I am not sure I could ever go back to injections at least not willingly.

Wishing everyone the best and good luck in whatever decision you make!
Lynn

I got the shingles vaccination a year ago. I am glad now especially since reading this about low WBC lowering resistance to infection and maybe bring on shingles. I am going thru a bout of low WBC right now (3.5) and wonder if it is caused by Avonex.

[mjan]

I got the shingles vaccination a year ago. I am glad now especially since reading this about low WBC lowering resistance to infection and maybe bring on shingles. I am going thru a bout of low WBC right now (3.5) and wonder if it is caused by Avonex.

Maybe we need a new thread on Shingles. Yes if you had Chicken pox I was told you need the vaccine. However, I have more problem with vaccines than the illness.

Have you heard if the Shingles vaccine NOT recommended for those with MS? Something to do with the immune system already being compromised.

Anyone?
Jan

[KevsLuv]

I am going thru a bout of low WBC right now (3.5) and wonder if it is caused by Avonex.

My WBC was less than 1.5 at last check. I can't remember exactly the numbers after the decimal but it was SUPER low. This was due to the gilenya.

On rebif, it was always around 3 to 3.5 and the doctors weren't too concerned about it.

[KevsLuv]

Have you heard if the Shingles vaccine NOT recommended for those with MS? Something to do with the immune system already being compromised.

I was told that when I began gilenya that I could not get any vaccinations. And the reason had something to do with the suppressed immune system due to the drug, not the MS...so for sure speak to your neuro before getting vaccinated.

[pennstater]

Have you heard if the Shingles vaccine NOT recommended for those with MS? Something to do with the immune system already being compromised.

Anyone?
Jan

I believe it is not recommended since it is a live virus and if we get sick, have higher likelihood of relapse.

For those on specific meds that suppress immune system, obviously at higher risk of getting sick if your WBC is lower.

For those on drugs that are immune system modulators, or not on a med, I don't think it puts you at a higher risk of getting shingles, but just what happens if you do get it. But I could be wrong, maybe someone with more knowledge will come along.

Good thing is that shingles does not have a genetic influence, I was worried since my two siblings each had shingles in early 50s, but neuro and primary said no correlation.

[Mamabug]

Maybe we need a new thread on Shingles. Yes if you had Chicken pox I was told you need the vaccine. However, I have more problem with vaccines than the illness.

Have you heard if the Shingles vaccine NOT recommended for those with MS? Something to do with the immune system already being compromised.

Anyone?
Jan

My doctor recommended the shingles vaccine. I got it two years ago with no problems.

[GinnyRuth]

My doctor recommended the shingles vaccine. I got it two years ago with no problems.

Same here Mamabug...I asked my primary care and my neuro and it was no problem. I'm on Avonex

[Mable]

Good post, My Oak.

I'm also psyched to see ocrelizumab come out. I'm sure it will have its side effects, but I like the once every six months part.