My wife is 44 year old. She had symptoms of MS from 5 years but we were late in detecting that it’s MS. We found out that it’s MS in 2011 November. She has been using Avonex from 2011 November. In the beginning, She became better but then Symptoms became getting worse again… These days, She has double vision, Trouble with walking, Weakness and few other symptoms… and they’re getting worse. How is Avonex working for everyone? Should She continue using Avonex or switch to some other medicine? Any suggestions on what we should do?
I am sorry that your wife is in trouble again, despite the Avonex. It is always very disappointing when this happens. I expect she has already been in touch with her GP and/or neurologist to get help withe the acute problems and prompt a review of DMD treatment options. I hope that she gets some good advice and help from them - that is the only source of advice that is really much use in situations like these.
For what it’s worth, I did well on Avonex for 7 years or so and was very glad of it. In the end, my MS got aggressive again, but the Avonex had held the fort for a long time. But these things do need to kept under constant review, and there are more options available now than there used to be.
Thank you for your reply. Our doctor suggest switching to Tysabri as it is more effective medicine. But we didn’t change because of the PML risk and side effects. I am very worried about future.
Hello and welcome
Avonex helps more with relapses than progression, but how well it helps varies a lot - some people find it is very effective, some find it doesn’t help them much at all. Tysabri is probably the best thing available at the moment and helps with both relapses and progression, but the PML thing is a worry to most people. Did you know that there is now a blood test for the JC virus that causes PML though? The chance of getting PML if someone is negative for the virus is almost zero. Gilenya may be an alternative if you decide Tysabri is not - perhaps it’s worth asking the neuro? It’s not as effective as Tysabri, but it is better than the injectables. There are new things likely to be approved this year and next too, e.g. BG12 (now called Tecfidera) is looking really promising and may be approved by NICE soon. What would work best for your wife, I really cannot say - we are all very different and it will also depend on whether or not she has still relapsing remitting MS. I hope her neuro can advise.
Do make sure you are making full use of any neurophysio, OT and other local services too. They can be a big help. As can getting the right meds for symptoms like pain and difficult sensory symptoms - do make sure you are working with your wife’s MS nurse and GP to get all the help she needs. Unfortunately it’s the people who ask who get in this day and age - so don’t wait for things to be offered
It is a tricky one, and unfortunately there are no risk-free options. I am on Tysabri now, because I felt that deciding not to not take Tysabri was a riskier option than deciding to take it.
I’m guessing here, but I have a hunch that people with aggressive MS tend to be keener on getting on Tysabri than their loved ones are, because the loved ones tend to fixate on the PML thing while the people with MS are the ones with the gut understanding of what aggressive MS can do (and already is doing). I would put good money on this being the case more often than not. Of course, it might be completely the other way round in your household!
Has your wife had a blood test to see whether she is positive for the JC virus, by the way? If she is negative, the risks of contracting PML become vanishingly small, and that might be a useful piece of information for her to have as she mulls over her options.
She wasn’t tested for JC virus as it isn’t available in our country. We’ll have to to send blood sample to another country for the test. But I’ll see about it… I’ll try to get her tested. Thank you for the reply.
Hi all Can someone please explain what JC virus and PML are ? Thanks Xx
Thanks for the reply. I’ll talk about this with our neuro. I saw information about BG12… it looks promising.
Very roughly (and from memory, so please forgive any errors!)…
The JC virus is a virus that about 54% of adults carry. It is normally dormant. When someone has Tysabri, there is a small risk of the JC virus being activated and causing a brain infection called PML (progressive multifocal leukoencephalopathy). If unchecked, PML is fatal. It causes permanent brain damage, with symptoms similar to MS, at least in the shorter-term. There is no cure. If someone gets PML whilst on Tysabri, they have to come off Tysabri immediately and have it flushed from their system (using dialysis) - the reinstatement of a normal immune system then stops PML.
The risk of getting PML depends on a number of factors. The most obvious, and the biggest, is whether or not someone carries the JC virus. If you do not, the risk of PML is effectively zero (although one needs to account for false negatives in testing). If you carry the JC virus, your risks vary depending on two things: whether or not you have ever had high dose steroids and how long you’ve been on Tysabri. People at highest risk are JC+, have had steroids and have been on Tysabri for more than two years. Their risk of Tysabri is about 1 in 92 (although I haven’t looked at the most recent figures).
I’d heard that there is a 2% chance of catching the JC virus each year, but I have also heard that you are much less likely to catch it in adulthood.
At the moment, Tysabri is only prescribed for people with highly active RRMS. It reduces relapse rates by 67% according to the trial data, but I’ve seen figures of 81% from post-trial data. It also reduces progression by a significant amount (maybe 50% or so, sorry I can never remember the figure).
If you have a look on the multiple sclerosis research blogspot, you will be able to find out the most recent data.
Ok, thanks Karen. Curiosity quashed. !! Xx
A user called plethora posted this on thisisms.com forums. Thought this might be helpful here.