flu jab

[mille]

I had 2 infusions of rituximab back in June and have read that there is no point getting the flu jab until the b cells return and that can take 6-12 months. Has anyone been told not to get the flu jab because of rituximab or do we just decide for ourselves.

[earthwitch]

Thats something to ask your rheumatologist or rheumatology nurse.

I wouldn't decide something like that for myself, even though I believe that the flu jab doesn't actually have live vaccine (which means it probably should be safe).

[mille]

The flu vaccine is not a live vaccine but that isn't the reason. It is because the rituximab removes the b cells (memory cells) so i have read it is a waste of time getting it until they return.

[helixhelix]

Yes, best to confirm with your doctor. All the immunosuppressant drugs affect different bits of the immune system and therefore have the potential to reduce the effectiveness of all inactivated vaccines (as well as making live vaccines potentially dangerous)but I'm not sure whether rituximab's affect on B cells is worse that other drugs that knock out other elements of lymphocytes such as the T cells. You can find general recommendations on immunisation produced by the US centre for disease control on the web, which seems fairly authoritative, and it specifically excludes flue vaccine from discussion about delaying immunisation in the immunosuppressed. Maybe as flu vaccine is short term basket of things, rather than just one? Or they reckon that even a low protection is better than none? Or more prosaically it's just because flu vaccines tend to be issued at a set time of the year, and you either get it then or have to miss out the year? Interested to know what you find out from your doc. Polly

[chrispe]

I have been told not to have it i had my infusion last month any help it all on the booklet they give u. May help chrisxx

[mille]

Thanks for your replies girls, i have to see the hospital again in december so will probably wait until then to ask. From what i have read there probably is no point in getting it before then. The biologic drugs all affect different parts of the immune system and as far as i know rituximab is the only one that affects the b cells, as they are the memory cells then getting the flu jab is probably a waste of time until they come back as that is the part of the immune system that remembers invaders and if the flu germ had to invade my body my immune system wouldn't remember getting the small doze that was in the jab, therefore it was a waste of time.

[optomistic]

Hi mille. I've started on Rituximab 5 weeks ago. I've got to go for my flu jab this saturday. Don't know what to do now!!!! How you finding rituximab and are you taking anything else with it?

[mille]

Hi, I have just read some more information on the ARTHRITIS RESEARCH UK site and they are saying that ideally you should have the flu jab one month before starting treatment with rituximab or 6 months after but if that's not possible then they recommend still having it although it may not be as effective.

I was given my first course of rituximab in June and i also take methotrexate 25mg and sulphasalazine and plaquenil. I was told it can take up to 3 months to work. I think it has helped me a bit as before i got it i was in a bit of a state. I couldn't even get off the chair without help at times and now i can move about a good bit better but I had hoped for a better response from it as i had to get a steroid injection two weeks ago and my feet are still quite sore but i think i have r/a very severe but the last couple of weeks i have felt a good bit better and i don't think it can all be down to the steroid. I forgot to say i was taking 10mg of oral steroids before getting the infusions and i haven't needed them since.

I hope it helps you, it does seem have a good success rate.

[Tillytop]

Hello Millie and fellow "Rituximabers"!

I am on Rituximab and have just had my flu jab - I hadn't been given any specific information either so am really interested to read what you peeps have said about this.

Millie - just wanted to say that, when I started Ritux I was told that it was extremely slow acting and that it could be up to a year (and 2 infusion cycles 6 months apart) before I would know if it was going to help me! I had my second cycle of infusions aout 3 months ago (should have had the second lot after 6 months but due to other health issues it was a year between my first and second cycles) and I was just beginning to think it wasn't going to work for me but, over the past couple of weeks I am seeing some definite improvements.

Optomistic - in terms of other meds alongside Ritux - I don't take mtx but I am still needing to take prednisolone. Currently I am on a dose of 7.5 mg daily but, pre-Ritux I was really struggling on 15-20 mg daily plus anti-inflamms.

Really hope we all find the Ritux works well for us! There don't seem to be very many people on the forum who are taking Ritux so it's good to hear how people are getting on. I have a couple of positive stories to share about Rituximab from recent hospital visits. Best of all was a lady I met who was going a year between infusion cycles and was feeling so well she didn't really feel she needed the infusion she was there for! Second, I sat next to the same man for both my last two infusions and the difference in him in the two weeks between the first and second infusion was incredible! I think he has been on it for a while now and he told me they only work for him for about 4 months, so he is on the maximum dose of 6 monthly infusions. The first time I saw him he was struggling to walk and clearly in a great deal of pain. The second time, two weeks later, he strode down the corridor, overtaking me on my crutches with an impressive turn of speed! Although he obviously had very active RA and was still pretty unwell even with the Ritux, I was still mightily impressed! I know that at least some of that is probably down to the steroid infusion which goes with the Ritux but even so!

Tillyx

[mille]

Hi Tilly,

Thank you for sharing that with us, it is good to hear positive stories on rituximab. I think you are right in saying that there are not too many of us on this site having this treatment so it is good to hear of other peoples experiences.

I must admit i did think it wasn't helping very much and on my last visit to the hospital they said i could get tolcilizumab as the next treatment but since being there things have improved somewhat and i now wondering if i was too hasty. When i think back to how i was before getting it i then realise it must be helping, although i didnt expect it to take so long to work. I did get a kenalog injection on my last visit but i have had jabs before and sometimes not shown any great improvement with them so i feel the rituximab must be helping.

Did you get any side effects with the rituximab? i was fine during the infusions but the next morning when i wakened my hands felt as though they were on fire and they were tingling really badly and after the second in fusion i felt my eye burning, i must admit that did worry me a bit. I hope you continue to improve and it.

Take care x

[Tillytop]

Hello again Millie

I agree with you that it can be difficult to know if/how much the Ritux is helping but I am glad you are beginning to feel that it may be helping you after all. Like you, I wasn't really sure but am feeling more positive about it the past couple of weeks.

Re side effects - I always feel absolutely wiped out after the infusion for a few days - I was warned about that because, as the consultant put it so beautifully there are "B cells dying all over the place"! Other than that, the only thing I noticed was that, after the first infusion of the second cycle, my feet were very swollen for a few days - not inflammation type swollen, more fluid retention. When it hadn't gone down after a few days, I spoke to the rheumatology nurse and she wasn't really sure what that was all about but they provided me with a footstool to put my feet up on for the next infusion and that made all the difference. So I'm guessing the swelling was just down to the amount of fluid being infused and sitting for so long. Other than that I haven't had any obvious side effects. I understand your worry about your hands and eye though - might be worth mentioning it to the rheumatology nurse next time you have an infusion.

Really hope you find the Ritux is working for you Millie - and it's lovely to communicate with others on the same drug.

Tilly x

[mille]

Hi Tilly,

Thank you for taking the time to answer. I also remember after the first infusion feeling totally wiped out and had to go to bed about 8pm. I did mention the burning in my eye to the hospital on my last visit and they did write it down but didn't say anything about it. At the time i really didn't feel it was helping and the sister said she thought i should have a second course around December but when i saw the consultant the next day and told him how i felt and the side effects he suggested i try the tocilizumab in December, i suppose i will have a better idea over the next month and then make a decision.

I am pleased that it seems to be working for you, it is always a bit of a gamble when we try the new drugs. I had enbrel for around 4 months and it didn't help me at all, if anything i think it made me worse so i really hope this does work.

Take care and hope you continue to improve.

xx