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Hi everyone out there

I’m a newbie to the site, and have searched as much as I can to see if there is info to help me make a decision on my current No 1 question – to stop taking Rebif or not, but didn’t find much solid factual information to help me at the moment.

A brief background – diagnosed Sept 2013 from MRI done in May 2013, no blood tests or lumbar puncture done as part of diagnostics. MRI report from May 2013 was “numerous” lesions in brain, and 3 in cervical spinal cord (still there, and even I can see them on the images!), plus “less defined” lesions in lumbar spine – which appear to have gone in the MRI done July 2014, and the official radiologist’s report from July indicated “no progression”.

I’ve read the OMS book from end to end and am most impressed by the wide-ranging and evidence based information in it. What really caught my attention was the note on page 219 about people stopping Interferons and finding they actually feel heaps better. I have been on full dose of Rebif for eleven months now, feel really bad all the time (and getting worse), and still have to take paracetamol and ibuprofen every time I inject. I have never had an identifiable relapse, although with the benefit of hindsight can now see that my symptoms first started back in around 2006. Current official EDSS score is 3.5 although at the moment I can’t actually walk (shuffle) more than 100 metres without rest.

I persuaded my GP to run some of the blood tests that should have been done as part of the MS diagnostic process. A folate deficiency has been identified – and NSAIDs such as Ibuprofen are known to impact negatively on folate absorption and levels. Percentage of Active B12 was also less than it should have been, and I’m now taking a strong and balanced B Group supplement. Some liver function markers are a bit elevated (Gamma GT has doubled since starting Rebif and is 20U/L above the top of the reference range). My platelet count is down by 25-30% since starting on Rebif, but still in “normal” range at present (even the official line from the Rebif manufacturers notes that this can cause tiredness/sluggishness – but they won’t name it up as what it really is – fatigue). ESR & CRP are very low at present, and while my Vit D3 could be higher it is still way above what most people’s is. I can also feel myself sliding into some degree of depression, which is potentially another Rebif side effect, and I have no motivation for anything at all, let alone any physical capacity to do anything much. Despite the “no progression” MRI report in July, I am physically a lot worse and a lot less capable than I was when the first MRI was done 18 months ago.

On my last appointment in July with the neurologist he was talking oral meds or Tysabri to stop relapses, but having done my homework on these meds, I really don’t want to go down this path. Given the “no progression” MRI report he was keen for me to continue with Rebif. I know that the clinical trials for CRAB meds show that the interferons reduce relapse rates by up to around 30%, but every time I raise the issue of me never having had any identifiable relapses he changes the subject. I can’t help but question the wisdom of taking a potent medication with all its accompanying side effects, which is meant to stop the relapses I don’t actually have, especially if it is contributing to making me feel so bad all the time.

Sorry this is so long, but in essence my key questions are:
Are there others like me out there who don’t have identifiable relapses, but are being prescribed the CRAB meds, and have doubts about whether it’s worth taking them?
Can other people who have chosen to stop taking the CRAB drugs share their experiences, and how they arrived at their decision.
Did they feel better overall when stopping these meds?

Thank you and I hope some of the OMS community can help me with this.
Hi
I can't offer any drug related comment but if your vitamin d is below the range we are aiming for I would address that.
Be mindful of taking a b complex as b6 is not good to take. A member Rebecca Hoover often reminds of this. I only take b12 twice a week.
Hi, I too am on Rebif. Just had my three month blood tests yesterday so waiting to see what effect its having on me......
Like most people I was totally unsure about starting Rebif. My neurologist says it has recently come out ahead of Copaxone and so that was the one to go for.

I have no symptoms at present and that made the decision harder - why take medication when I'm fine. I was diagnosed after a period of numbness in the legs spreading to the stomach. While not pleasant, it doesn't impact daily life. I was recommended Rebif as I had active lesions: spine and brain.

I came to the conclusion that I would fight MS in every way I can. I adhere to the OMS diet and exercise regularly, just starting the meditation.
I have two young children and I want to be fit for as long as possible for them.

Incidentally, my neurologist says there's no need to repeat the MRI and he's put me on annual follow-ups. Just to monitor for relapses.
Many people here seem to have repeat MRIs - for what function?

My mind may change about the Rebif following results.

One other question- I have not approached the subject of OMS with GP or MS nurse or neurologist so have not had vit D levels checked. I really need to get this done but not sure how to approach them : any advice???

Thanks, Jan.
You don't need to give a reason just ask for your vitamin d level to be checked and b12.
If asked your reason is you are going to supplement and need to know your level.
At this stage I would not invite responses.
There is a vitamin d paper on this site can print off if you really feel you need something.
Hi TigerT,
I'm like you and wanting to stop the Rebif but I've been on it for 14 years! The reason I want to stop is because it doesnt have the samme effect it once had it just makes me feel worse and all injection sites are so sore now. I am worried about what will happen when I stop because I've been told some people feel worse. I'm more SPMS so the neurologist is happy for me to come off it. I saw the urologist a couple of months ago and she was a bit amazed at how I don't have more bladder complications and she thinks it's because of the Rebif and she doesnt want me to come off it! And since I've been on Rebif I havent had to go to hospital for relapses. But I definitely am sick of the injections so I will stop taking it.
Good mornings. Dont know how things are on your side of the world but on ours it is still sunny and warm!
So this is my side of story: After 4 mri s, 2 lumbar punctures and endless blood tests to excude any other disease I was diagnosed with ms. The physical symptoms were dizziness/vertigo and numbness in arms and legs.Initially I was prescribed Rebif 22 but this caused epileptic seizures plus I suffered another relapse in the meantime. The oedema on the brain was prety bad and did not improve even after the administration of solumendrol (according to brain mri no.5 ).... So after another 7 drips of solumendrol two months later I was put on tysabri, straight after giving up rebif.
It is well tolerated, lesions shrunk according to mri 6. HOWEVER dizziness persists and now I feel pain in my spine and legaments (hands and legs) despite the fact that there are no new relapses. Psychology affects the overall situation a lot. If I am motivated to do something then things look good, if I have a bad day then forget it. I try to avoid pain killers as much as possible. When pain is too strong (maybe twice a month) I take Mensulid.
Rest is important, I use a hard matress rather than the expensive and wonderful Tempur with memory foam and try to sleep on my back....
So to summarize, try to keep yourself as motivated and busy as possible to boost your psychology. I know how ms can affect us. Vittamin wise I am on omega 3,6,9, B complex and D3 in the winter months, Calcium and Magnesium plus fruit and vegies. Every time I go for my monthly drip I have a blood and urine test and things seem to be going well. Mri 7 next month will tell us exactly what s going on under the skull....
Good luck and all the best....
"Incidentally, my neurologist says there's no need to repeat the MRI and he's put me on annual follow-ups. Just to monitor for relapses.
Many people here seem to have repeat MRIs - for what function?"

A. It depends on how difficult/hard/complicated it is for a doc to send you for an mri.
B. It depends on how aggressive your MS is. Mine is (or was) so I had 5 mri s before being prescribed tysabri a 6th a month after I started tysabri and the 7th to follow a year later.
So docs find it necessary till the situation stabilizes. Once it does, then an annual follow up is enough.
C. Same applies to lumbar punctures.
I had to have 2 in 3 months and still, I was diagnosed with ADEM till I had another relapse. Then it became clear it was MS...
Chicky disease....
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