Aa
Aa
A
A
A
Close
What DM drugs are you on? What have you had success with? Any with horrible side effects? Any advice is welcome. Thank you
4 Responses
Sort by: Helpful Oldest Newest
1168718 tn?1464983535
I say the same thing that the other ladies have spoken of.  

I myself have not had much luck with DMD's...... I have been on Copaxone, Avonex, (2) , Aubagio, and now waiting to try out the Tysabri ... the big guy I'm told.

I felt best on Copaxone, but it do alot of damage to my skin leaving it hard , and indented, and no sensitivity .....

Avonex, I flushed, and got incredibly hot and felt like I had the worst case of the flu, could not get warm and stuff like that, so that is why we stopped that one.

Aubagio I went off because of my skin peeling, fingernails peeling, and general all over not well.  My hair fell out alot, ( I was told a bit more than your hairbrush) after you brush your hair.  Well, I have been off it for 2 months not, was only on 7 weeks, and my hair is still coming out in handfuls.

I hope this helps, are you taking Gabapentin , baclofen or anything like that ???

Hope this doesn't scare you, but YOU are the best Dr. of YOU !!!   Don't let the Dr's dismiss you, and make sure you make them listen, and if they don't, go with your gut feeling, and change Dr's.  I went through 5-7 Neuro before I found one that was OK, not great, did not really like her, but she was the better of the bunch.  

Right now, things are going along, and we wait, as we all seem to at so many times in this journey.  We are here, and don't feel worried, it does work out in the end, but my advice for certain, "keep looking, keep digging, and don't take what they say without checking it out and make sure you are ok with it" , Most Dr's I have now, after almost 7 years now, everything changes everyday, it seems and that is why we must be our own advocate too !!!

Hope this helps,
Candy
Helpful - 0
488198 tn?1493875092
I have used Avonex for years, and I consider it a “success” because my condition has not deteriorated and I haven’t had a relapse in years. But you will find Copaxone, Rebif, and Betaseron users that will tell you the same thing. On the other hand, others take those medications and still face significant disease progression and/or find the drug side effect intolerable.

Many users of newer oral drugs also find success, although those drugs have not yet stood the test of time. I tried Gilenya for 19 days a few years back, and obviously that was a failure for me. The side effects included effects on my heart, but many other MS patients are not predisposed to problems there.

All medications have side effects, but those vary unpredictably from person to person. With steps to mitigate those effects, I find Avonex tolerable, but Gilenya wasn’t. Another perfecly sane person might have the opposite result. Find the medication you can tolerate, the one you most reliably take without missing doses. And remember that you can always change and try something new as I did, so don’t overthink the decision.
Helpful - 0
11119474 tn?1428702170
Thank you for that link, JJ.  Very helpful resource.
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Hey there,

This is the latest 2015 disease modifying drugs pdf from the national MS society, it discusses everything you could possible wish to know about the DMD's and well worth reading through.....

http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-The-MS-Disease-Modifying-Medications.pdf

Hope it helps

Cheers..........JJ
Helpful - 0
Have an Answer?

You are reading content posted in the Multiple Sclerosis Community

Top Neurology Answerers
987762 tn?1671273328
Australia
5265383 tn?1669040108
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease