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What do I do?

hi there, after some advice and hoping my fellow msers can help.

i have had ms for 20 years which started as RRMS but changed to SPMS about 5 years ago. However, I also still have active relapses. This year, I have had 2 disabling relapses which resulted in a visit to a neurologist. She arranged an MRI which showed that my disease is still active and had gadolinium enhancing lesions which is unusual after 20 years.

the dilemma I now find myself in is that I have been offered treatment. Apparently I qualify for Ocrevus and any of the interferons. I genuinely don’t know what to do. I am very allergic and sensitive to medication.

what do I do?

my MS affects my hearing, vision, balance, mobility - to name just a few things.

what do I do?

any advice would me appreciated.

Love and hugs

Michelle x

Hello Michelle

I’m in almost exactly the same boat.

MS for 22 years, very sensitive to medication, I’ve had bad reactions to 3 DMDs, classed at SP for about 3 years but I’ve now had a couple of relapses. My MRI also showed a couple of new enhancing demyelinating lesions. My rehab neuro is now classing me as Active or Relapsing Progressive and referred me back to the MS specialist (who I used to see until I stopped taking DMDs after the last failure and decision that it was progressive) with a view to seeing what DMDs might be possible given my history of bad side effects.

I was going to ask about Ocrevus. My appointment has now been moved up to about 3 weeks time.

What DMDs have you tried before? I had severe cognitive problems with Avonex, hepatitis from Tysabri and very low lymphocytes with Tecfidera. I’ve also had elevated liver enzymes from 2 other drugs, oedema from another and essentially am very nervous about further drugs, but more so about further relapses. I’m already a wheelchair user. I don’t want to lose my arms/hands/eyesight/anything else that’s pretty vital!

I’m sorry, I have no answers, no opinions. Just wanted to say ‘me too’. And to hear what other people say.

Sue

Hello Micha,

Though I’ve severely relapsing and remitting MS, having failed both Tysabri and Lemtrada ( Alemtuzumab-a chemotherapy), I qualified for Ocrevus (Ocrelizumab).

My last treatment option was Stem Cell Treatment, which is still on trial in most parts of UK. As Ocrevus has recently been approved, and shows very good suppression of MS relapse rate of 50%, and nearly 70-80% improvement in MRI evidenced MS activitiy, I chose Ocrevus instead, and had its’ first two courses of treatment. Each is about six hours long, and two weeks apart in end of September this year. And later infusions every six months.

Ocrevus is based on a newer MS approach, in which, B or based white cells within Central Nervous System are attacked, and not T or travelling white cells of blood. Americans have already carried out research on Ocrevus for 40 good years, and its apparently quite effective against severe RRMS and also progressive one.

Although there are risks involved, like of PML( as far as I can recall), but certainly nothing majorly risky as Stem Cells.

Neuros. tell to expect actual improvement after six months. And that white cell count has to be less than 5. So bit of flu, etcetera.

Hope it helps

xxxx

Hi Michelle

The MS Trust have an online tool here to help people decide which DMT to try here - https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

The advice I always give to people is that no decision is final. If you find you react badly to one, you can always swap to something else. The first one I used was horrible, really bad side effects and did nothing to slow down relapses. So I swapped to another one, which was great. Only mild side effects, and very effective. It’s also worth bearing in mind that side effects are often worse at first, but then lessen after a bit.

Hope you get it right first time!

Dan

Hi Sue, thank you for taking the time to reply. I have not tried any DMDs - I have never been offered any!!!

when I mention side effects to drugs, I mean normal ones - I had an anaphylactic shock to a contraceptive pill and also to a drug used for IBS pain.

My biggest daily problem is pain and fatigue - am I right in thinking that DMDs will not help with this?

I use crutches whenever I am out. Also have a walker and a mobility scooter which I use when I go to larger shops with my boyfriend - as I can’t manage to get it in and out of my car.

Please keep in touch as I am interested to know how things go for you.

Michelle x

Aqm805,

thank for for taking the time to reply. Interesting to hear that you have started Ocrevus. How was the infusion - did you have any reactions at this time. Interestingly this is the bit that makes me feel most nervous - having suffered with anaphylactic shocks.

If there was something that would help with my pain and fatigue - that would move to the top of my list.

this year, I have had 2 nasty relapses but I have also been under a lot of stress.

am I being niaive or stupid when I feel that learning to manage stress would play a part on MS.

having had the disease for 21 years - I feel I have stepped into a minefield and genuinely don’t know what way to go.

Thanks again

michelle x

Hello Michelle

Like you had MS for a long time 16 years, been on Tecfidera for 3 years which was fine, no problems with it but now offered Ocrevus at start of November as my Neurologist said it may improve my walking, I use a stroller.

Jumped at the opportunity ( if you don`t buy the ticket you cannot win the prize) I am a positive thinker.

Still waiting for the go ahead.

Posted a similar request few weeks ago and the replies are at the bottom of page 2.

Ocrevus advice please, last comment aqm805 on 18 Nov 18.

Good luck, your decision

Bertie

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‘Afternoon Michelle,

hope you’re feeling better these days.

Regarding infusion reactions, while having first 6 hour infusion, there was just a bit of itchiness around my right ear. But no rash or anything else. With second infusion 2 weeks apart on 1st October, everything went smoothly luckily. They any ways give IV steroids beforehand over an hour, and an IV anti allergy medicine.

Even I was so shaky about getting new treatment, as even I very easily react to most medicines around.

Unfortunately, with me, Ocrevus did increase my fatigue markedly. But it’s quickly helped with by the neuros., via Amantadine 100mg capsule in the morning. It keeps me awake through the day now, which I really like it for.

About pain, have you tried Gabapentin or Pregabalin. And amitryptyline at night, it helps a lot with nerve pains, anxiety, depression too.

I hope it helps.

I would suggest, don’t stay off MS treatments, as nowadays they are doing so much vast a research.

Regards

Ammarah

Bertie,

thanks for replying. Neurologist commented that I wasn’t positive and I said I am but I am also nervous due to past experiences.

i hope that somehow I will come to the right decision - I just know that I need to feel happy with my decision.

i will read your other post.

thanks you again

michelle

Dan,thanks for your reply.

i note your comment about side effects and many of them are tolerable. Sadly anaphylactic shocks have left a lasting effect in my memory.

i feel that I am swaying towards the Interferon route - just don’t know which one yet!!!

thanks again

michelle

Hi again Michelle

If you’re too worried about the side effects, then maybe your best bet is a drug that is less risky than Ocrevus, which is why you’re feeling like an interferon would be good. Personally, if I were choosing one of the four old style injectables, especially given drug reactions in the past, I’d choose Copaxone. I’ve taken Avonex and had horrible cognitive side effects, it took me ages to figure out what was wrong, partly because I couldn’t think properly. So I switched to Copaxone.

Sometimes people may have a bit of short term ‘flushing’ with Copaxone, it only happened to me once, about a year after starting it. Very odd, but literally over in minutes. The other thing to be aware of is injection site reactions. You have to rotate your injection sites, choosing fatter places on your body to inject, for me it was most often my bum and thighs. I avoided my arms as they were too skinny, occasionally my stomach. But I actually had no trouble with it at all.

And Copaxone is actually my fallback drug of choice. When I stopped it, I thought it wasn’t working for me any more. But it might not have been as bad as I thought. (I didn’t keep a diary then, I do now!) So my options that I’ll be discussing with the neurologist are Copaxone and Ocrevus. It might be that s/he decides that Ocrevus is too risky given my drug history. In which case, I’ll ask to go back on Copaxone.

In my opinion, if you are relapsing any drug is better than no drug. So a drug that reduces relapses and severity of relapses by only 30% is better than 0%.

Sue

Hi Michelle

I can’t comment on all the drugs, I am on copaxone and as far as I know I’m doing well on it. I see my neuro next week for MRI results so that may change things, who knows!

I just wanted to respond to your comment about stress. I figured out a few years ago (been diagnosed 6 years) that most, if not all of my relapses came on at times when I was stressed. So I decided to deal with the stress and got into meditation. That was back in July 2015 and since then I have had very stressful periods, new baby, flooded out house resulting in house move, periods of anxiety and depression…but I have had no relapses (yet). Call it luck, call it what you like, but I genuinely believe my daily meditation has helped immensely. I practice Vedic meditation and went on a course here in London. Best £300 I’ve ever spent! :slight_smile:

Hope that’s helpful, best of luck.

Lisa x

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Sue, thank you so much for your reply. I have ruled out Ocrevus given my allergic reactions. I will have a look at Copaxone.

thanks again.

michelle x

Hi Lisa,

thanks for your reply. Meditation is certainly something that I want to learn. Thank you for your suggestion.

will read up about Copaxone.

michelle x