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Feeling impatient or fobbed off

So today I went for my ocrevus follow up to see how I’m getting on. Quick inside story, January to August I was in relapse and told I have very active ms. They gave me 3 steroid doses intravenous drip, these worked great after 2 weeks I finally had some days pain free. Then the sent me for ocrevus treatment 2 half doses. Now I’m back in flare with new symptoms vertigo and lips going numb, itching, I’ve had wet accidents, fatigue and chronic back pain. Today I’ve been told I cant have an mri for atleast 6 months to check my progress also my back pain is not ms related and told basically to grin and bare it with medication (just not in those words) and to have some physiotherapy. Am I over reacting or am I right in thinking there must be something else for me I’ve spent 36 weeks of this year in relapse and were on week 38. I’ve reduced my work due to the pain I have no life because I’m always fatigued or frightened of falling. Anyone in the same position? I’m 18months DX.

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sorry Mel but i’m from the pre ocrevus generation.

you have my sympathy though.

see your GP so that it gets onto your medical records.

if you absolutely can’t stand it tell your neuro that you want to come off it.

they always seem to have the next drug lined up.

at least i was reassured when starting tecfidera that if it didn’t work for me i would be able to start lemtrada.

Hi have you spoke to your neurologist over this? are you RRMS or PPMS.

when i saw my neuro over it for PPMS and he told me there were issues and that if I was offered the drug after intensive tests to see if i was active i would be closely monitored. he did say some people were finding their symptoms would worsen under this drug and others it would work.

unless the neurologist is informed they don’t know. Its pointless being put on something that is not going to work. If you are RRMS then there are other choices.

You need to see your neurologist as a matter of urgency. You say THEY but you are not saying who is giving you the treatment.

I would push to see neurologist hun. xxx

Hi, i saw a nurse in my local hospital yesterday not my main neurologist. I’m RRMS the nurse seemed more than sure i wasn’t PPMS.

The treatment was offered from a different nurse and my neuro they are at the hospital i’ve had everything done at but i haven’t seen them since having it.

i would like to think it will eventually settle down but it’s keeping sane in the mean time. nurse told me yesterday that it can take up to 2 years and won’t be able to change treatment, i can’t do 2 years like this. i felt hopefull about this drug suppose we are all very different.

Hi Mel

It sounds like you are being rather let down by your MS nurse and neurology department entirely.

Although maybe the nurse you saw yesterday wasn’t your usual MS nurse, but a general neurology nurse.

Have you spoken to your MS nurse? If not, you could do so. Otherwise contact your neurologists secretary and ask for a message to be sent to him/her about how you are feeling and the fact that just a short time post infusion (I assume you’ve had the two initial infusions) you are relapsing again.

It may be that Ocrevus isn’t suiting you and it’s not protecting you from relapses. If so, the question really is what is the drugs half life? By that, I mean how long does Ocrevus take to have washed out from your system. If it’s the whole 6 months, then to some extent you might have to deal with the relapse but have no other DMD until Ocrevus has gone from your body.

If, on the other hand, it’s possible to take a different DMD earlier, then an appointment with your neurologist and possibly a new MRI might be arranged?

Meanwhile, if you are relapsing, it’s what to do about the relapse. Are you certain you don’t have an infection or UTI? An infection or virus of any kind can give you pseudo-relapse symptoms. So you’d need to deal with the infection/virus and that should help the MS symptoms.

Otherwise, how long is it since the relapse symptoms began? If it’s more than a couple of weeks, it might not be worth taking a course of steroids as they work best when taken early in the relapse. The misery of taking them wouldn’t be outweighed by any possible benefits.

Finally, many people with MS suffer back pain. It’s nonsense for the nurse to say categorically it’s nothing to do with MS. Sometimes it’s secondary to MS symptoms (caused by walking badly or other postural issues), and I’m sure sometimes it’s an actual MS symptom.

Best of luck.

Sue

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Hi,

I am also having Ocrevus started in march this yr and the first 2 half doses I initially felt worse for at least 6 weeks (infact I was scared that I was developing PML my anxiety took over and made my ms symptoms worse).

I had my first full dose on the 12th September and for the first time in along long time I have felt well so it maybe that our bodies need to adjust .

he only thing I would say is that I have been prone picking up infections lately which I never used to be but thats to be expected as it suppresses immune system.

I still think its early days with Ocrevus but I am planning now to persevere.

All the best hang on in there hopefully symptoms will eventfully reduce enough to move forward .

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Mel,

Take more notice of what Kerste says than me. I have no personal experience of Ocrevus so can’t in the slightest bit understand what it does to your body. Talk with your MS nurse about the drug and your experience.

Sue

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That’s given me a little hope. Thank you