Reaction to vaccine?

[momo17]

Hi, I have systemic sclerosis with interstitial lung disease. On mycophenolate, prednisolone and nefedipine among other things. Due to get vaccinated for covid on Tuesday. I’m aware it might not be so effective for me but just starting to worry a bit about side effects with my already compromised immune system. Anyone in similar circumstances already had jab? Be keen to hear how it went. Thank you.

[Hidden]

Has your Rheymatologist told you it’s safe to have the vaccination whilst on an immunosuppressant?

[trunchalobesity in reply to Hidden]

Yes and I had it two weeks ago despite being fully immune suppressed. I felt a bit achy and had chills for a few days but took paracetamol and it soon passed and now I feel fine x

[Coldhands65]

Hi. I too have Scleraderma. I’m on2 lots of 2 different kinds of immune suppressants, I’ve had conflicting advice as to whether or not I should stop taking this before the vaccine. So have stopped anyway. My vaccine also next week. One of my consultants has been involved in the covid trials and assured me there is nothing to worry about.

[Agedbiker]

Hi Momo. I also have systemic sclerosis with interstitial lung disease. I am on mycophenolate and prednisolone but not nefedipine . I have had my first vaccine this week. Apart from a sore arm I have head no issues with it. There is no risk for those who are immunosuppressed as none of the vaccines are "live". They are not quite as effective on us as they are on others but they do provide a good level of protection from the worst reaction if we were to contract Covid. If you have doubts then speak to your GP or Rheumatologist to set your mind at rest. O was told not to stop any medication prior to the vaccine ,but our conditions are very case specific. Good luck.

[trunchalobesity]

I also have scleroderma and ILD am on mycophenolate at the maximum dose and prednisone. I had the Pfizer vaccine 2 weeks ago and after day 1 my arm was a bit sore I then felt a bit achy all over with chills but after 2-3 days felt fine. Hubby no side effects x

Good luck

[FellsandLakes]

Hi, same situation here MMF with tadalafil (and ILD).. no prednisolone. Had astra zeneca 2 weeks ago. Got one day of the common symptoms listed (headache, fatigue, muscle ache) but took myself off to bed and gone next day. I checked with my rheumy and stopped the MMF for 2 weeks after the jab as there is evidence this helps after the flu jab to give the body a better chance at producing antibodies. I was reassured that stopping for just 2 weeks wouldn't make SSc worse (But I'd suggest everyone checks with their own team). I started back on MMF 2 days ago. I've had no reaction to the jab apart from that first day and it was the same symptoms as a lot of my older none SSc friends had. Hope that reassures you somewhat 😁

[momo17 in reply to FellsandLakes]

That’s great to hear and interesting about the mycophenolate. Think I will pen an email to Rheumadvice at my hospital in the hopes of getting someone a bit more clued up. Like aged biker said everyone’s case is so unique it’s hard to know what to do as advice for one may not apply for another, but does give me confidence hearing of folk with similar diagnosis n meds having little or no bad reaction. Thanks so much for your reply.

[momo17]

Thanks so much to everyone for your reassuring replies. I did ask my rheumatologist who said it was safe to go ahead but to be aware it would be less effective. When I asked about the potential of a vaccine for the immune suppressed, he said he didn’t know n to ask my GP!! I was kinda hoping he’d be more interested n informative! Never mind. That’s great guys. Hope you are all same with second dose. That’s interesting coldhands you’ve stopped taking the immune suppressants beforehand. I see with rituximab you need to get vaccine at certain time between doses but like you say no real advice on what we should be doing with our daily dose. Obviously we want to create some kind of immune response for it to work but definitely not too much in our case!

[Mlw79]

I have the same diagnosis as you abs have recently had the first Pfizer jab. I had a sore arm abs head aches for about a week but nothing that a paracetomol couldn’t solve. I hope it goes well for you x

[homeat42]

I have the same conditions plus Sjogrens, Reynauds, Scleroderma, but on steroids only. Got the Oxford jab a week ago. Had extra fatigue and was extra cold for couple of days. Arm still sore to the touch.Just so glad I had it.

John

[Sanmateogirl107]

INFORMEDCONSENTDEFENSE.ORG please look at this julie

[momo17]

Thanks so much guys for all the info. Nothing back from hospital yet on possibly suspending the mycophenolate. Maybe tomorrow. Really appreciate this meantime.

[Agedbiker in reply to momo17]

It looks like the latest general advice is to carry on if you are already on mmf. They are considering delaying anyone about to start on mmf so that they can have the vaccine first and then start the course. More detail in this link.....arma.uk.net/covid-19-vaccin...

[momo17]

Really informative article. Excellent. Thank you agedbiker.