Forum

Secondary Progressive

Hiya

What meds are those of is suffering Secondary Progressive on? Having to make a decision soon and just wondered.

Thanks for your help as always.

Shazzie x

I’m not on anything

Hi Shazzie,

I am SPMS as well but I won’t be any help to you as I am not on any meds but I am interested to find out about meds as well.

I am still working and start work at 6.30am, and as most of the meds I have heard of make you drowsy I am a bit reluctant to go on them.

I used to manage not too badly but lately I feel as I need the help of something. The days I am not working I can cope with but days like today when I am I just feel awful. Fatigue, spasms in legs and hot, feet feel as if they are crawling with insects.

I am sitting here with bare feet as that seems to be the only thing that helps just now.

Mags xx

Hi Shazzie,

I am SPMS and I take Clonazepam at night to stop the myoclonic jerks. Keppra morning and evening to relax the muscles which help relieve the nerve pain. Pregabalin and Baclofen, have had to increase Keppra a couple of weeks ago. But it seems to work for me, but am sure others msers will be using different drugs. Hope this helps.

Janet

x

Nothing!

Shazzie, I am no expert but from reading this Forum over the last couple of months it seems to me that if someone is SPMS then no treatment is given for the MS itself but most of us do take symptomatic medication. I take Propranolol for tremor, Baclofen for Spasms and I have just started taking Amitriptyline for tingling, buzzing and burning arms, hands and legs.

If you are now classed as SP and have been offered medication to treat the MS itself then ask yourself and or your Neuro

A) did it work when you were RR.

B) if not why does he think it will work now.

C) did it have side effects.

D) did the benefits outweigh the side effects.

E) which other treatments are you being offered.

F) if you refuse now will you be given the opportunity at a later date.

I’m sure there is a million other things you should consider but i can t think of any right now. Is it possible for you to discuss all this with your MS nurse before you see Neuro? The only other thing I can think to say is, don’t be rushed into making a decision.

Be strong, be brave and if necessary be a royal pain in the a**e.

Jan x

I’m SPMS and as far as I (…and my neuro) am aware, there is no current medication for progressive forms of MS. As Janhhh says, specific symptoms can be treated, but sadly I have never responded well to any medication after the first week, so I just don’t bother with meds anymore !!

Dom

Thanks for all your helpful replies.

Apparently, Extavia has been licensed for SPMS now so we had a chat about that.

I stopped Rebif originally as I was getting sore from the injections and I decided to have a break from it.

I was also offered to go back on the Rebif as I was getting on well with it.

I’ll let you know how I get on. Will be interesting to see how it helps SPMS.

Shazzie xx

I’m still rrms but i know it is possible to have the odd relapsing episodes when you are spms.

If this is the case - then if you can manage the side effects of the dmd then i would personally say it would be a good idea to keep hold of the dmd as long as you possibly can.

May98 - i agree with you! Tecfidera would be a brilliant choice. But i presume May98 is from Scotland???

If Shazzie lives in England - it is not available to us yet!!!

If you are from Scotland Shazzie - then ask about the oral drug Tecfidera (bg12). It sounds very promising.

Good luck!

Teresa.x

sorry shazzie! our posts crossed!

I’m SPMS and the only meds I’m on is 3x10mg Baclofen daily. When I saw my neuro last month for my annual review, he mentioned that a couple of drugs were ‘in the pipeline’ for treating SPMS. He thought that access to them may be dependant on whether your ability to walk a certain distance was possible or not.

Neil

Shazzie

i take 50mg Amitriptyline at night for nerve pain and to help me sleep

and amantadine 2 x 100mg for fatigue during the day

i am also on a drug trial for MSers with SPMS

Mark

Hi Shazzie, I take 100mg Amitriptyline each night, it lets me sleep well & helps control nerve pain. During the day I take Paracetomol & Ibuprofen as & when needed.

I’ll soon be starting on LDN, not expecting miracles from it but I think it’s worth try.

Hope you’ll get something that helps

Rosina x

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The older readers will know that I was expecting to be officially SPMS this week, and that I came off Copaxone in May thanks to the Healthcare at Home fiasco at that time. In June, I had what was, for me, a typical relapse.

So, on Wednesday I saw a neurologist who brought up the subject of BG12/Tecfidera.
Yesterday the hospital phoned with an appointment to see the senior MS consultant for a second opinion.

So far, my approach had been similar to the one outlined by Jan, above, doing what is really a cost/benefit analysis. This brings it back almost to the start of the thread. :slight_smile: The key bits are will the benefits be there for me, or will I not be able to tolerate it. If it keeps me out of a wheelchair for another couple of years, and I can get away with only a couple of months of side effects, then I like the idea.

But we get to the bottom line, and there are really two things to think about:

  • Am I really at the SPMS stage, or just at the tail end of RRMS?
  • When will BG12 be available in England?
    The hospital are expecting BG12 to be available by October (so only 8-10 weeks) and there is always the thought that they could be looking for people to try it out on.

My “second opinion” appointment is for Monday (Wow, that was quick), and there is no way of knowing what will come out of that. So, all I can do is to be ready. I hope you are a bit further along the road, Shazzie, and hav a different set of choices. If BG12/Tecfidera is one of those, you might like to take a look at:
http://www.msworld.org/forum/showthread.php?t=131113
which is the thing that helped me make an outline decision.

Geoff

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Oops! Sorry I was thinking DMdrugs.

But I am on Baclofen, for the most horrendous full body spasms.

Me too Tilly and Horrendous is my description as well.

Jan x

Sorry for hijack back to topic.

I was told by my MS Nurse and Neuro that my MS is now Secondary Progressive. I take a grand total of 34 tablets a day :frowning: One immunosupressant (Azathioprine 5 tablets/day), 24 of them are for symptom relief (vertigo, muscle spasms, neuropathic pain etc) and 5 vitamin supplements. Feel free to PM me if you want the full list :slight_smile: I rattle when I walk but it keeps my MS stable.

Hi Dave

I know exactly what you mean. I am taking a lot too for the spasms etc etc etc.

.

How do you know if your pp or sp I seem to have all and more than people saying they are sp/pp I just don’t understand, Arrrrr. My nuro says I’m borderline?

Reading your and dave’s msg’s I was taking lots of meds too, but apart from constipation, I didn’t think they were doing anything, so about a month ago, I went cold turkey, stopped the lot, just take the odd paracetamol ibuprofen combo, don’t feel any worse,

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