ms medication

[kelly6934]

i have had ms for 7 years now. i have been through mri's and all the tests they perform for it. i was on the shots you take for it. those shots made my white count drop so extremely. i was passing out from them also i had celulitious from it. i had a hole in my leg for 7 months from using rebif. i took myself off shots for now 5 years.my mri of the spine and head shows no progression.but my nerologist says i need to be on some type of shot.i feel better without them.i take many many pills a day to keep going but i will not do the shots ever again. and as far as steroids go i had a very bad reaction to them to.i feel if my ms is not getting worse why do i need shots? can you advise me on this matter.
thanks,
kelly

[Lulu54]

Please excuse my lack of manners here Kelly,  I saw your reply to the FEAR thread and came back to see if we had officially met-  I totally neglected answering your post here.  

I'm glad you found our little community here - I hope you will find something of use to you.  

Jen has done a good job of explaining the importance of DMD's.  Yes, I know it is a nuisance and for many much more than just a mere annoyance to take that injection.  But it is the only option we presently have, unless you want to try Tysabri.

Have you had this very important discussion with your doctors?  The concerns you have are all very legitimate, and your doctors can review them with you and perhaps make different choices available to you.

In the FEAR thread you listed being afraid of going blind.  Total blindness from MS is rare, but the problems of vision are pretty common as the disease progresses.  This fear should be enough motivation to get on a drug that works for you and to stick with it.

my best and welcome again,
Lulu

[Lulu54]

AmishErin,
do you really pretend to your doctors and mom that you are still taking the shots or are you kidding us here?  I hope that as an adult, if you have made this decision to stop dmd's you are letting your caretakers know so they can monitor your condition.

sorry to sound concerned, but I really am,


Lulu

[AmishErin]

I too took myself off of interferon I had an MRI about 18 months ago that showed no progression but I know I am having small flares or something...

Besides the site injection problems you lose a whole day after you take the shot.  I figure when my 11 yr old grows up and moves out I will seek a DMD treatment again... in the meantime I am living without painful shots that add years to my life

I have only had pneumonia once since I stopped taking them... I Pretend like I take em to doctors and my mom and stuff but really they suck

[sllowe]

Hi there,

Welcome to the forum.  I'm sorry the low WBC has made it impossible to stay on the med.  Did the Dr. recommend a smaller dose at all? I've had the low WBC too from Rebif, but I'm back on it again, and so far so good, though I've not been at the full dose for very long yet.

A good Dr. will recommend a disease modifying drug because like Jens says, they can help with relapses, attacks, etc.  MS is said to always be active, and most Dr. cannot predict if you will have a mild course or not.

I'm glad to hear the MRIs are stable.  The fatigue is definitely life altering and something most of us share whether we are stable or not.

Some of our members have taken Provigil for the fatigue.  Hope some will chime in and share their experiences.  

Welcome again, and thank you for joining us, Kelly.

Hope to see you around,
shell

[jensequitur]

Kelly, if you're having fatigue, it's a sign of progression.  The brain has to work harder to get past the broken connections, so it's going to tire you out.  At least that's what they tell me!

[jensequitur]

I think you're a good candidate for one of the new oral drugs for MS.  I'm not sure if they're out of clinical trials yet.

The DMDs are meant to protect you against relapse, and some are shown to help prevent axon loss as well.  Axon loss is the real invisible danger in MS - even without lesion formation, the brain can lose axons, causing a gradual decline.

So it's really up to you - if you have a bad reaction to the shots, then consult with your doctor about getting on the oral medications.