At Crisis Point with DMD's - help and opinions Needed Pls

[MrsChip]

Hi all,
I'm seeing my neuro on Weds and they want to put me on Gilenya.
Briefly, been on C, A and Tysabri.
Copaxone didnt seem to help me. Put me on Avonex then had to take me off as my WCC dropped dangerously low. Then Tysabri which I proved Allergic to after 3 doses.
So they put me back on A last August. Had multiple infections, viruses and have never felt so ill for so long in my life WCC dropped to 2.3 after 2 weeks! Came off in Feb and was supposed to start Gilenya in March. I told them I needed 2 months to recover my general health as its taken me weeks to finally feel well again after A.
The thing is, on Weds I want to tell them I'm not going on G. It lowers the immune system twice as much as A and I just cant live with constant infections and feeling so ill all the time. I can deal with my MS, but I cant handle being that ill for months again.
I'm waiting for BG12 which to me is relatively safe and looks really promising. I was going to suggest going back on C in the meantime as even if it doesnt help, it definitely didnt hurt me.
Am I being silly not wanting to go on G? I am also taking Vit D, Malic Acid, L-Carnitine fumerate and other supplements to try to get a similar effect as BG12 until it's available. My neuro is adamant that all his RRMS patients MUST be on a DMD.
Does my reasoning make sense, and can anyone offer any opinions or advice for or against my plan? I dont mind if you dont agree with me, just could really so with some views from others
Cheers
Rach

[Pkar2]

Hi, MrsChip

Had a Neuro Dr. say the same to me. Got a new Dr. When I told my new Dr. what was said to me, he was shocked and said that Dr. was out of line. So, you tell me who is wrong?

I agree with what you want to do and if he does not support it, you need to get a new Dr. too.

Good luck to you. Some of these Dr's make it so hard. I have found one who is working with me. He is from the Cleveland Clinic and is the top Dr. for MS

[Sara Angela]

Sounds Reasonable

What you are planning sounds reasonable for what you have been through. I was on Rebif and my WBC went very low. My Dr. said that Gilenya would probably do the same thing.

Sara

[techie]

Your body, Your choice

It's your body. I figure you have a lot of choice with what you put into it
I choose because we are close to retirement to not be on any.
I don't want to spend our retirement savings on something that DOESN'T cure.
techie

[roo613]

Sounds reasonable to me too. I had to go off rebid due to liver issues. Neuro originally told me that I shouldn't go on gilenya because it would probably impact my liver as well.

[MarkLavelle]

My neuro is adamant that all his RRMS patients MUST be on a DMD.
Does my reasoning make sense, and can anyone offer any opinions or advice for or against my plan?

While I can understand why a neuro might want all their patients to be on DMDs, I think it is a kind of blackmail (i.e., unethical) to refuse to treat people who aren't willing to take drugs with serious side effects.

If you don't feel like shopping for a new neuro, and yours is that inflexible, I would go with Copaxone until you can switch to BG-12 (especially if you didn't have bad side effects with C). But first I'd argue in favor of waiting for BG-12...

[cosake]

You should definitely consider a new neuro. Although my neuro is pushy about being on a drug, they wouldn't refuse to treat me if I decided not to take one. They said they would request more frequent MRIs.

Every med affects every person differently. You might be surprised and do OK on the Gilenya. You can always stop taking it if you start to feel bad.

However, the decision should ultimately be yours -- not your neuro's.

[MrsChip]

Thank you to Everyone

Thanks for all your replies and views - all have really helped me. I'm sticking to my guns on this and will agree to C gut not G.
Unfortunatey, I live in England and the way the NHS works is that you don't get to choose your Specialists.
My neuro would still treat me if i went off DMD's. They put you into a group for "Symptom and Relapse Management" so I would still get plenty of help.
Thank you again - you're a great bunch of guys and gals :-) xx

[MrsChip]

Got a Good Result

HI and thanks again for your replies.
After all my flapping (thats English for panicking:-) my neuro totally agreed that Gilenya was not a good choice for me due to my reactions to Avonex.
So I'm back on C until BG12 (Panaclar) is out in the UK next year.
Don't mind at all as jabs dont bother me at all and I had no side effects from C last time.
Astonishingly, I got my latest scan results too from March. They compared 2008,2010 and 2012 and said that disease activity was slowing down year by year. My latest scan was better than my last scan in 2010 indicating that myelin repair had taken place on a small scale.
I was off treatment when I had the scan, so the only thing that had changed was I had taken Vit D for 6 months by then. Professor Hawkins who is the head honcho in the UK now believes that in some people (and I may be one), the disease burns itself out. You always have it but you reach a plateau with no more relapses and no progression. I'm at year 21 and still RRMS but I'd never heard about this burning out thing before? Anyone else?

[BigA]

I've heard something like that, but nothing I could find. There is a natural decrease in exacerbations over time, but I'm not sure how that shows up in disease activity. I have read that the disease changes from an inflammatory to a degenerative mode, but i'm not sure this is the "burning out " process you are speaking of.

i have heard that in a way, if you can remain relatively unscathed through the inflammatory part, you're likely to have little decine, but I can't find anything written.

[owlnona]

Hi! I've been on Rebif for 12yrs. I've never had any problems in all this time,untill 3mo.ago. when after my last injection of the week I developed an injection site reaction call "Cellulites".

I was on over a mo.of antiboitics & it was not healing,I ended up in our hospitals "Wound Care Center",after another mo.it's just now making progress.

All this said,I've been off the Rebif,( neuro's orders) & I'm very reluctant to start again.I havn't had a flair in over 5yrs.,I'm almost 67yrs old & have been reading how older people can go off thier DMD's. I see my neuro in June so I'm going to push for it.

I'm very good about "obaying" my neuro,but I also feel you need to listen to your body.Only you know what it's telling you.
Keep us posted God Bless Nona Judy

[BigA]

Of course, if you wanted, the Avonex might be an alternative - skin reactions are very rare.

But that's interesting if your doctor feels you can quit.

[MarkLavelle]

I guess you could call a bacterial infection (cellulitis) a 'site reaction,' but that's stretching things quite a bit unless there's evidence the bacteria came with the meds/needle...

[futurmil2b]

Hi all,
I'm seeing my neuro on Weds and they want to put me on Gilenya.
Briefly, been on C, A and Tysabri.
Copaxone didnt seem to help me. Put me on Avonex then had to take me off as my WCC dropped dangerously low. Then Tysabri which I proved Allergic to after 3 doses.
So they put me back on A last August. Had multiple infections, viruses and have never felt so ill for so long in my life WCC dropped to 2.3 after 2 weeks! Came off in Feb and was supposed to start Gilenya in March. I told them I needed 2 months to recover my general health as its taken me weeks to finally feel well again after A.
The thing is, on Weds I want to tell them I'm not going on G. It lowers the immune system twice as much as A and I just cant live with constant infections and feeling so ill all the time. I can deal with my MS, but I cant handle being that ill for months again.
I'm waiting for BG12 which to me is relatively safe and looks really promising. I was going to suggest going back on C in the meantime as even if it doesnt help, it definitely didnt hurt me.
Am I being silly not wanting to go on G? I am also taking Vit D, Malic Acid, L-Carnitine fumerate and other supplements to try to get a similar effect as BG12 until it's available. My neuro is adamant that all his RRMS patients MUST be on a DMD.
Does my reasoning make sense, and can anyone offer any opinions or advice for or against my plan? I dont mind if you dont agree with me, just could really so with some views from others
Cheers
Rach

Oh my... "MUST BE ON A DMD".. That is your decision and your decision alone. He can suggest it, but it should be totally up to you. I am currently not on any type DMD med.

The only problem I seem to be having is tight, stiff muscles.. especially neck/shoulder/leg/abdomen. I guess its spasticity.. I guess. I dont even know anymore. I am also menopause stage so who knows what's going on with my poor body. I am 52 young, look 40 but feel 85.

Just started on HRT and I do like it, thought it would help with my muscle tightness/stiffness but it has not.

Jay

Jay