16 posts Page 1 of 2
Hi. I have been on OMS for three months now. I was diagnosed in July 2017 with RRMS following an extremely severe episode which hlanded me in hospital for almost two months and began Tecfidera in September. However, it does not seem to be working and I was unwell/had a relapse in October and felt pretty bad over most of December as well. A recent MRI in February showed that in addition to the 'multiple lesions' I already had there was one new one, previous to that there had been considerable growth to an existing one (this showed in an MRI in November which had to be redone in February because they didn't use contrast for some reason). Since a recent, very stressful visit to the hospital I have felt a worsening of all my symptoms again but I am still sticking with OMS. Prior to my diagnosis I was always very into sport but I was a person who got stressed easily and had had a lot of stress in recent years. I have always been pretty much vegetarian apart from eating fish.
Because my MS seems so aggressive I can change to another medication but I am really terrified of Lemtrada. The other options are Cladribine or Fingolomid. But Fingolomid does not seem to be so effective and Cladrine is not yet widely available in the whole of the UK, which is where I am based. However, it could be soon.
Basically, I was wondering if anyone had experience similar to mine of having to move to a stronger DMD and what they chose? Also, I wondered particularly if anyone knew much about Cladribine which is new and what their experience of it was?
Also, is going onto something stronger advisible when also trying to purse OMS? I would rather not take anything at all - Tecfidera did nothing for me and kept my blood count pretty low - but on the other hand a lot of medics advise really hitting MS hard with medication as early as possible. My MS was probably there years before I got diagnosed and I do have so many lesions they don't even count them so does that mean a hard hitting medication is the best route?
Sorry this is so long and thank you for any advice you can give me.
Diagnosed - June 2017.
OMS - January 2018.
Can't help with all of your questions but a quick google sugests that Techfidera takes a around 6 months to be fully affective,

http://multiple-sclerosis-research.blog ... s-dmf.html

So it would probably would not have made any difference in october. You say you felt bad through December, was this another relapse or just feeling bad from the October relapse?
Your recent increase in symptom, could this be down to the stressful hospital visit?

Just wondering if all this activity is down to the Techfidera not having started working properly>

Not sure if this helps

BG
Thank you. It could be that the Tecfidera takes six months to kick in, although I was told three, and was hoping to feel better a lot quicker than I did. I don't know what is a relapse and what isn't. I had several episodes where I got new symptoms but the MS people I see didn't seem to think they were serious enough to be a relapse even though each time I felt really bad for weeks, and the MRI shows new and enhancing lesions. Guess I need to find out more somehow. :?
Diagnosed - June 2017.
OMS - January 2018.
I wouldn'trule out Lemtrada so quickly.

I was on Tecfidera and had to stop as it caused my lymphocytes to get dangerously low. Yesterday, I finished round one of Lemtrada infusions. I know all the risks, but the side effects are treatable. Personally, I am delighted to be on Lemtrada.
OMS is still the thing that I rely on trust most, but Lemtrada is my safety net.
OMS since 17/08/2015
Diagnosis 28/05/2015 - 22/09/2015
Thanks Diggity. How did you find the treatment? Are you able to go back to normal activiies soon? I would really value hearing how it has been for you! I suppose knowing how easy it is to manage the OMS diet and so on while getting the treatment is another area I am unsure how to manage .... Tec has lowered my lymphocytes too quite a lot more than the case with many but bloods were 'acceptable' at last check. It just doesn't work it seems - for me. I
know there is minimum for lymphocytes and it isn't good to stay below that for long .... Really glad you have had the treatment you wanted and thanks for your really encouraging and helpful thoughts. ;)
Diagnosed - June 2017.
OMS - January 2018.
The treatment was absolutely fine. Just a minor rash and nothing else. The biggest problem was the boredom of being in hospital for five days (some hospitals let you go home, though).

This week has been harder as the steroids have worn off. I've got more extensive rashes (looks like I've got chicken pox) that come and go. Also, I feel a bit spaced out, very fatigued and some previous relapse symptoms have come back (my balance is now terrible and my left leg isn't always doing what it's told). Having said that, this is all expected and is all expected to subside. I have this week booked off work, but I expect I'll start back after the weekend working from home and sitting at a desk.

The OMS diet has been no problem. I ordered vegan food in the hospital which probably broke some OMS rules, but I tried my best. Afrter treatment, you need to be on an anti-listeria diet for three months which doesn't allow several things including soft cheeses, pates and meat that hasn't been thoroughly cooked. It looked like I could avoid any changes to my diet until I spotted one thing: smoked fish. No smoked fish allowed.

Your neurologist should give you an information pack from the drug company with lots of info if you ask.
OMS since 17/08/2015
Diagnosis 28/05/2015 - 22/09/2015
Hi Diggity. Good to know it hasn't been bad and the side effects are all as expected. The recurrence of old symptoms is probably the most scary thing for me as the episode that led to diagnosis was, in my case, wide ranging and debilitating. But, I have been warned about this possibility of the old synptoms coming back ... and assured they wane again. I glad to hear you are preparing to get back to your normal activities and the tip about ordering vegan in the hospital is a good one! Smoked fish I didn't know about but I haven't got a pack yet or done all the reading. Hope the weekend shows more positive recovery for you and you are feeling stronger all the time. I'd be interested in how long are you advised to stop sport/exercise for or if it is just a case of waiting til you feel ready ...Wishing you lots of R and R and a smooth transition back to work! ☺
Diagnosed - June 2017.
OMS - January 2018.
The time off exercise is until I feel ready. I've been doing a bit more day by day, but just walking. I'm now up to about 50% of my normal walk distance on day 5 post treatment and the old relapse symptoms are starting to fade already. You won't necessarily get all your old symptoms. Thankfully, I haven't had the double-vision that I had at diagnosis.

Haven't had a rash for a couple of days, but I'm still taking Pirirton just in case.

My plan is to do nothing other than short walks next week and review week by week and day by day. Everything so far has been completely as expected and so, in my mind, that means the Lemtrada is working as it should and I can live with the side effects if that means no more relapses.
OMS since 17/08/2015
Diagnosis 28/05/2015 - 22/09/2015
That sounds promising and reassuring, Diggity. I am glad it is all unfolding well for you. It sounds like you have a good and sensible plan for getting fit again.

I have been doing a lot of reading and one thing I have come across several times is people saying that Lemtrada may not be as effective if you take it a long time after diagnosis and/or if your MS is advanced.

Although I was only diagnosed last year I have been told I have an extremely high number of lesions and must have had MS for many years. Since beginning Tecfidera six months ago I have had a new lesion. Another grew but that may have been before Tecfidera had time to take effect.

Do you know anything about longevity of MS and Lemtrada effectiveness? I can't find anything other than general statements repeating the line that it is best taken early. If I am to go through the battle to get fit again (it was a long haul after the devastating collapse that led to diagnosis) I just want to be sure I pick the best option. There are new drugs coming out but some are still a way off - Ocrevus looks promising. I know if you take Lemtrada you can't try anything else for some years, due to the protocall.

It is bewildering to have to choose what to do and what to take. I am now strictly OMS. I always enjoyed sport and ate quite healthily before diagnosis but am now more disciplined about both. The main thing I need to improve on is meditation - and coping with stress. But I find the feeling that the MS is so active and having to decide what drug to take is stressful in itself.

Hope you enjoy your walks this week and the gradual recovery to business as usual. It is great hear it is all going so well and very encouraging. Thank you.
Diagnosed - June 2017.
OMS - January 2018.
The taking it early is because it should stop disease progression and you can be left with a any symptoms that you already have. Having said that, a lot of people have had improvements after treatment. My thinking is that, by continuing with OMS, I am giving my mind and body the best chance to heal. Lemtrada is not a cure and it doesn't always work, but it can massively reduce disease progression.

In terms of other treatments, you can move on to another DMT if your body is up to it. You're not actually taking anything after the infusion. It has wiped out a lot of your immune system which, over time, your body will replenish. Once you're back to full health (normally at least 3 months) then you have no restrictions on what you can take.
OMS since 17/08/2015
Diagnosis 28/05/2015 - 22/09/2015
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