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19-02-2021, 15:32   #2491
tinofapples
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I had my infusion on Monday. They said vaccination would be fine after a few weeks. Probably won’t be getting it for a lot longer than that though.
The way the vaccine is being rolled out I see it being months before we get done, like during the summer possibly

An overcautious MS team I have perhaps
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19-02-2021, 16:06   #2492
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The way the vaccine is being rolled out I see it being months before we get done, like during the summer possibly

An overcautious MS team I have perhaps
Me too. Hopefully early summer though but I’m not keeping my hopes up.

My MS team were adamant I continue with the infusions at the right times i.e. 6 months apart. Strange the way different hospitals are working.
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19-02-2021, 17:50   #2493
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My son is due infusion in March and was advised by St Vincents team not to take vaccine for 6 weeks before or 6 weeks after. He is a key worker (youth worker) and they were offered it for next week but he cant take it
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19-02-2021, 21:14   #2494
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Me too. Hopefully early summer though but I’m not keeping my hopes up.

My MS team were adamant I continue with the infusions at the right times i.e. 6 months apart. Strange the way different hospitals are working.
They ensured me that it was effective up to 12 months
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20-02-2021, 15:45   #2495
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I was taking Gilenya up to a few weeks ago, am starting Rituximab in 2 weeks time.

I noticed since I stopped Gilenya my symptoms got worse and even noticed new ones. Did this happen to anybody who changed medication and did the symptoms return to the level they were at, after a period.

Thank you.
Can I ask why did you go off Gilenya. It’s a known fact that stopping Gilenya will cause disease relapse and/or new symptoms. I’m in it 2.5 years and tolerating it well. I’d be frightened to go off it now
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23-02-2021, 11:27   #2496
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I was taken off Gilenya because I was one of the people that developed squamous carcinoma and put on Tysabri nearly 3 years ago my Neuro was of the opinion anything else would be a backward step. I haven’t had any new lesions or any active ones in that time. The infusion every 28 days was the only problem as it’s very hard to work or organise holidays then we have Covid to deal with and after the first lockdown and Hosptial’s got very busy again I asked to change meds to every 6 months to avoid the place as much as possible. After a number of tests it turns out I have latent TB which must be sorted out first with a 9 month treatment of antibiotics. Just shows how funny life can be doing my best to avoid the place has led to me being in and out more often. So if I could I would love to be back on Gilenya it was so easy to deal with.
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23-02-2021, 12:00   #2497
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Was in for my second Tysabri infusion yesterday- have to say, I was absolutely floored afterwards. Spent the afternoon snoozing on the sofa!

My neuro nurse was chatting away to me and she said she reckons those with neuro conditions (us, Parkinsons, epilepsy etc) will be jabbed April/May time. Gave me hope!
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24-02-2021, 00:29   #2498
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Was in for my second Tysabri infusion yesterday- have to say, I was absolutely floored afterwards. Spent the afternoon snoozing on the sofa!

My neuro nurse was chatting away to me and she said she reckons those with neuro conditions (us, Parkinsons, epilepsy etc) will be jabbed April/May time. Gave me hope!
Looking at the revised schedule, people with MS are right down the line , unless they are on meds like cladribne, Ritux, Ocre and Lemtrada . Desperately disappointed here . I’m a primary teacher , no possibilities of keeping children even 1 m away .
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24-02-2021, 09:27   #2499
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Looking at the revised schedule, people with MS are right down the line , unless they are on meds like cladribne, Ritux, Ocre and Lemtrada . Desperately disappointed here . I’m a primary teacher , no possibilities of keeping children even 1 m away .
Where are you seeing that??
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24-02-2021, 14:08   #2500
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Where are you seeing that??

https://www.gov.ie/en/press-release/...tion-strategy/

It seems people with neurological illnesses than can cause serious breathing difficulties will be moved to cohort 4 eg. motor neuron disease.

Also moved to cohort 4 under immunocompromised:

Severe immunocompromise due to disease or treatment, for example, Transplantation: - Listed for solid organ or haematopoietic stem cell transplant (HSCT) - Post solid organ transplant at any time - Post HSCT within 12 months Genetic diseases: - APECED** - Inborn errors in the interferon pathway Treatment: - included but not limited to Cyclophosphamide, Rituximab, Alemtuzumab, Cladribine or Ocrelizumab in the last 6 months.

Cohort 5, neurological illnesses that can significantly compromise respiratory function and/or the ability to clear secretions eg. Parkinson's disease, cerebral palsy.
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24-02-2021, 14:14   #2501
Nigel Fairservice
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Looking at the revised schedule, people with MS are right down the line , unless they are on meds like cladribne, Ritux, Ocre and Lemtrada . Desperately disappointed here . I’m a primary teacher , no possibilities of keeping children even 1 m away .
I think it's mad teachers aren't further up the priority list. My sister is a primary teacher. From Monday she will be back in a room with 20-25 kids and a special needs assistant. The kids she teaches are too young to understand social distancing. I have been working from home for months as has my partner. I only come into contact with people once a week when I do the shopping. I'd rather my sister be vaccinated before me.
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25-02-2021, 14:11   #2502
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Originally Posted by Fourwinds View Post
I was taken off Gilenya because I was one of the people that developed squamous carcinoma and put on Tysabri nearly 3 years ago my Neuro was of the opinion anything else would be a backward step. I haven’t had any new lesions or any active ones in that time. The infusion every 28 days was the only problem as it’s very hard to work or organise holidays then we have Covid to deal with and after the first lockdown and Hosptial’s got very busy again I asked to change meds to every 6 months to avoid the place as much as possible. After a number of tests it turns out I have latent TB which must be sorted out first with a 9 month treatment of antibiotics. Just shows how funny life can be doing my best to avoid the place has led to me being in and out more often. So if I could I would love to be back on Gilenya it was so easy to deal with.
How did they detect the squamous carninoma??? I’m in Gilenya 3years now and I’ve ever been checked
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25-02-2021, 23:48   #2503
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In regards how it was discovered I had what I thought was a pimple on my back that just would not pop and became sore in the shower if it wasn’t covered with a plaster so I went into a specialist which turned out to be my Neuro’s uncle so I asked him to talk with him long story short they started mapping my body and as I was in having my 4th one surgically removed he told me that I was being taken off Gilenya as 1 in something like 100000 developed these growths but there’s also similar number to My current treatment (which only my MS nurse told me)
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26-02-2021, 13:08   #2504
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These last few weeks ,my 'bad' foot has felt a stone weight ! I've never noticed it this heavy before
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03-03-2021, 12:15   #2505
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Sorry if a bit off topic - I need to renew car insurance and just recently diagnosed. I know I need to notify this now when getting quotes - just wondering what peoples experiences have been ? Did it make much of a difference to the cost ? Health wise I am good currently and on Gilenya.
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