Just about to start Kesimpta. My nurse didn’t mention shingles since I had antibodies from chickenpox as a child. Just wondering if the shingles vaccine was something I should have had?
Tbh when I had my meeting with my MS nurse at the hospital she didn’t talk about vaccines before stating the DMT. I had my flu and Covid booster, they did them the same time then I got a bad UTI. My doctor surgery are not forthcoming and wouldn’t do the shingles vaccine as I’m not old enough.
I’ve been on kesimpta since oct last year, 
I continue to be okay. I’ve not had any infections since starting, but I try to stay clear of anyone who is poorly.
I believe if it’s a live vaccine it has to be given a month before you start kesimpta, once you start kesimpta you can’t have live vaccines.
Latest vaccine requires two doses a month apart but it is inactive.
There are complex rules on ages, but if you are over 50 and immunocompromised you should be OK but receptionist is likely to know more about the changing rules for over 70 now changed to 65 not over 80 unless immunocompromised. All on the web page.
It depends on your doctors surgery, as I was declined! I was declined a flu jab, but the NHS contacted me for that. I was 55 at diagnosis, they were informed I was due to start DMT but wouldn’t allow me to have the shingles vaccine. Tbh my battle is still going with my doctors surgery, it’s all becoming quite tiresome.
I was in the cohort that was 65 plus but not yet 70 when they changed the rules. I had been scheduled for Cladribine so wanted the vaccination before I started. Not sure if I received it because I was in my 70th year or because I was about to become immunocompromised.
It is annoying when you know it makes sense but it needs to be passed through the NHS logic/algorithm. A less charitable person might say it depends if they get their bonus by giving it to you!
Need to get to the appropriate decision maker who can see the bigger picture!
It would have made sense to have it before I started kesimpta, but that didn’t happen. The trouble is there’s too many double standards, and everything is a battle! It’s so wrong and I know I’m not the only one. He who shouts the loudest gets help, that doesn’t make it right it just makes it harder for others.
Well I’ve been informed now that, although I could have the vaccine if I really wanted it, it’s not advised and wouldn’t be signed off by the specialists because it isn’t necessary. Looks like the end of that then.
Well I didn’t know that. Hope you get on well with kesimpta when you start.
I would definitely have wanted the new, effective Shingrix vaccine before starting Kesimpta. Was refused due to age.
I think the vaccine is actually authorised for anyone aged over 18 - so it would be interesting to know if some areas are offering it to those of us who will be immune-suppressed. Shingles can be a nasty illness even if you are not immune-compromised. And my understanding is that it is a “reactivation” of the chicken pox virus, so anyone who has had chicken pox as a child is at risk.
I’ll ask for it as soon as I turn 50 but it may not be quite as effective, having started kesimpta already.
I got told I wasn’t old enough at 55!
I think it depends on the area you live in.
I do not think people with MS are classed as immunocompromised. Some of the DMTs are likely to lead to this and suggest vaccinations are more effective if done before the start of treatment.
This leads to a Catch 22 situation where you don’t qualify before treatment but it is too late after you start!
Think you are deemed to have a weakened immune system, but the treatment I’m on it destroys the b cells to reduce the amount of relapses and to slow down progression.
I was contacted regarding flu jab before the winter due too having MS, think it’s down to individual doctors surgery whether they offer this vaccination to those under the age they deem appropriate for it. I’m unfortunate, as my doctors surgery I’ve had to fight every step of the way, and still have too.
You should be offered Shingrex from age 55 if you are on immune-suppressant or immune-compromising drugs. It’s in the Green Book guidance on vaccines chapter 28a p. 7, I think this is still the current guidance for GPs - why not point them to this:
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Thank you so much, I had the discussion but it fell on deaf ears. It’s becoming tiresome the amount of times I’ve had to complain to get some help, long story but I appreciate your help thank you. x
As I read it, the Green book is talking only of severely compromised immune system. Also like the annual flu jabs, Shingrix is not a live vaccine and shouldn’t cause any problems for those on Kesimpta. Speak to your MS Nurse to get proper info
Well, but it specifically mentions people who are “receiving or have received in the previous 3 months targeted therapy for
autoimmune disease, such as JAK inhibitors or biologic immune modulators including B-cell targeted therapies” - that’s quite a lot of people with MS.
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