On Avonex - New Lesion and Relapse

A board to discuss the Multiple Sclerosis modifying drug Avonex

On Avonex - New Lesion and Relapse

Postby chintan » Thu Feb 18, 2016 4:16 am

Hi All,

I am new to this forum and this is first post.

I am 31 yr old male. Diagnosed with RRMS in 2013 March (Optic Neuritis and Balance issues). Had few lesions on Brain and no lesion in Spine. Have been on Avonex since then. Had one pseudo/very mild attack in 2014 (no MRI changes then) for balance issue.
However recently I got my 2nd major attack(10 days back) - Foot drop and some sensation in leg. Got 5 Solu-Medrol IV. New MRI shows the some enlarged lesion in brain (non-active) and new active lesion in spine. My Neuro wants me to refer some other specialist in-order to understand my progression and may be check for Tysabri.

Now I have the following questions
1) Is it normal to have few relapses and new lesion while on Avonex?
2) If no then can i still continue taking Avonex thinking it may still be working (not very effectively)
3) What are the options if I don't want go for more risk drugs like Tysabri.
4) Can I still manage 20 years of working if i am in desk job with MS

I am scared to death about taking Tysabri or even Tecfedera because of PML. I feel already, I am quite unlucky to get MS and so I don't want take anymore chance.
chintan
Newbie
 
Posts: 1
Joined: Thu Feb 18, 2016 3:15 am

Advertisement

Re: On Avonex - New Lesion and Relapse

Postby ElliotB » Thu Feb 18, 2016 8:05 am

Your questions are all good questions to ask your neurologist.


Is it normal to have few relapses and new lesion while on Avonex?

None of the MS therapies necessarily stop relapses and new lesions entirely, they are thought to reduce the frequency and perhaps the intensity.


If no then can i still continue taking Avonex thinking it may still be working (not very effectively)
Your neurologist is in the best position to determine if he/she thinks the Avonex is working for you.

What are the options if I don't want go for more risk drugs like Tysabri.

There are many other choices when it comes to MS drugs. Ask your neurologist and do some research on the web.

Can I still manage 20 years of working if i am in desk job with MS
Ultimately it depends on how you feel and what your symptoms are.

Hope you are feeling better soon.
ElliotB
Family Elder
 
Posts: 1038
Joined: Mon Feb 03, 2014 5:08 pm

Re: On Avonex - New Lesion and Relapse

Postby lyndacarol » Thu Feb 18, 2016 8:44 am

chintan wrote:Now I have the following questions
1) Is it normal to have few relapses and new lesion while on Avonex?
2) If no then can i still continue taking Avonex thinking it may still be working (not very effectively)
3) What are the options if I don't want go for more risk drugs like Tysabri.
4) Can I still manage 20 years of working if i am in desk job with MS

I am scared to death about taking Tysabri or even Tecfedera because of PML. I feel already, I am quite unlucky to get MS and so I don't want take anymore chance.
Welcome to ThisIsMS, chintan.

I am not a doctor. I can only offer my opinions on your questions:
1) I used Avonex for 7 years. My symptoms continued and worsened during this time. I have chosen to discontinue all the approved drugs for MS, choosing instead lifestyle changes, such as diet and supplements.
2) Your doctor has the final word (you may be able to persuade him if you wish to continue taking Avonex).
3) I recommend that you have nutrient testing and, if levels are low, supplement (with your doctor's guidance) to reach and maintain optimal levels (NOT just minimally acceptable levels). Start with a vitamin D test; then, the 4 tests necessary to establish your vitamin B12 status (#1 serum B12 test, #2 RBC folate test, #3 serum homocysteine test, and #4 methylmalonic acid test). Solu-Medrol is known to deplete vitamin B12.

Magnesium, iron, and zinc are often low in people diagnosed with MS. – These should be tested also. A vitamin D or vitamin B12 deficiency can cause neurological symptoms, as can other nutrient deficiencies. It is possible to have more than one condition at the same time – you are allowed to have a deficiency in addition to MS.

Please request your own copy of any test results – it is important to have the actual test result numbers.

4) No one can predict the future course of the MS; it is different for every case, but there are certainly people who work and lead quite a normal life.


I share your fear about Tysabri or even Tecfidera – I would be unwilling to take the risk of PML (a HORRIBLE disease!). Ultimately, YOU will make your own decision.
User avatar
lyndacarol
Family Elder
 
Posts: 3345
Joined: Thu Dec 22, 2005 4:00 pm


Return to Avonex

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service