Last reply 1 year ago
Progressive MS – nothing to help

Hi

Have had MS for quite while. I am 45. It was confirmed when I was 24. For a while it as relapsing/remitting which meant some days were better than others. At first I tried Avonex which did not agree with me, flu like symptoms an made me feel quite week. I stopped it. The neurologist at Queen Square in London recommended Copaxone – daily injections. Have been taking it for a while. There are no side effects and the neurologist says I should stay on copaxone for this reason.

The fact of the matter is that is no effects, good or bad on me. My condition is progressive now

I had my yearly check with the neurologist. Explained my thought including that the lack of side effects is not good enough to keep taking it.

I felt he was clutching at straws, as knows the condition id progressive, but wants me to try Gilena. Am still waiting to see if my blood tests are ok. I don’t know whether to bother as Gilena is not relevant for the progressive type.

I’l just need to decide what to do.

So here’s my whinge!!

Sorry its boring

Eddie

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stumbler
1 year ago

@EddieVickers , have you had any recent MRI scans to monitor the situation?

Are your symptoms deteriorating to suggest a previous diagnosis of Primary Progressive MS (PPMS) or a transition to Secondary Progressive MS (SPMS)?

Or is it that the Disease Modifying Treatments (DMTs) have been doing their job by preventing relapses?

It’s encouraging that your Neuro is prepared to keep you on DMTs. These don’t come cheap.

So, there’s a bit to think about. No need to apologise for the whinge.


lucyh
1 year ago

Hi @EddieVickers, @stumbler is right, no apologising necessary (I love a good old whinge myself! 😉 While it is not here quite yet, in the pipeline is a drug called Ocrelizumab that can be used for progressive forms of MS. It also works on the RR version of MS.

Here are some links that might be useful so you can read around the topic:

http://www.bbc.co.uk/news/health-38392548
http://www.cbsnews.com/news/new-drug-gives-hope-for-those-with-progressive-multiple-sclerosis/

Do ask your health care professionals about it….as far as I know it is waiting NICE approval (assuming you’re in the UK). Take care, Lucyh xx


stumbler
1 year ago

rachelw
1 year ago

Hi Eddie

This was like reading about my experience it was so similar so you are not alone! The only difference is I used to take Rebif instead. I came of it in 2012 when it was agreed by ms nurse and neurologist that as I now had secondary progressive it was not bringing anything to the table. Currently like many with SPMS I an not on anything but there are some drugs ( finally) in the pipeline for us SPMSers.

I am glad to be free of the injections and this brings a quality in life of its own so do what you feel is best for you, don’t be discouraged and remember you are not alone 🙂


lmhf
1 year ago

Hi Eddie,

My story is similar, but my doctor can’t seem to decide if I’m SPMS or PPMS. I started off with Beta interferon for several years, and then then switched to Tysabri for three years. Now they have me on Copaxone which I find the most challenging given the skin reactions. I’m a bit on the scrawny side so I just don’t have enough fat to inject. I question why I went from a big gun like Tysabri to a first line of defense with low efficacy. I guess they want me on something, and hope the new medication ocrelizumab will be approved. Not sure how I feel about starting that after reading some of the literature. Let’s hope more medications come down the pipeline!


EddieVickers
1 year ago

Thank you so much for all of your comments. Am pretty sure its SPMS. its so nice to hear people dealing with it as I do. But am always interested in possible new medication options.

I live in Milton Keynes and I have the meetings at Queen Square in London. The local MS Nurse believed that if I transferred the service to Oxford, they would almost certainly recommend coming off the Copaxone. I don’t mind ‘jacking up’ every day which I halve been doing for years, but I think the condition has been getting progressively worse regardless.

I try to keep reasonably fit and work. Naturally when I get home I very tired, but am happy to be at work.

Again, thank you so much for your comments, it means so much.

Onwards and upwards!!


burgme
1 year ago

Hi Eddie, I have SPMS and all I get told is that there is nothing they can do for SPMS, I go to Queen Square and has started a blind drug trial and at the moment taking one of four drugs, and have had two MRI scans, I have just started to go to the gym to see if I can build up the strength in my muscles, it seems to be a long process but one that I need to take as I am hoping this will keep me mobile, I use a wheelchair for outdoors, but can use a four wheeled walker indoors, I am hoping they can do more for secondary progressive MS in the days ahead and that it will be beneficial to us sufferers of the condition, until then all we can do is keep positive.


cameron
1 year ago

Why not try Gilenya? It works in a different way, is dead easy to take and once you’re on it, you’re guaranteed annual MRIs and regular monitoring of bloods, That in turn means that more attention is being given to you instead of effectively coming off the hospital’s radar when treatment is stopped.

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