Tocilizumab, Metoject/booster vaccine/possible positive

[Moomin8]

Hi Peeps 🙂

I want to start by saying that I'm not positive with Covid.

However, I wanted to ask: has anyone taking Tocilizumab has a third vaccine and/or booster? If so, did you do your Tocilizumab injection? I'm due my booster tomorrow and my Tocilizumab injection is due today. My Metoject injection is due Saturday. I'm not sure whether to do my injections this week.

Also, if I was to become Covid positive, should I stop Tocilizumab and/or Metoject?

I know we're not doctors, but I've asked GP and rheumatology team and haven't got any answers. I need to decide today.

Has anyone had a vaccine and then found they're positive in the following few days?

Has anyone got a letter and PCR test from CMDU?

rheumatology.org.uk/practic...

Update 6 a.m. I'm Covid positive now by 2 LFTs - been trying all night to book a PCR test - nothing!😥 I've called 111 fir their advice with my meds, whether I should have a course of Covid pills etc - I'm awaiting a callback. I've also left a message with my clinical nurse. Feeling pretty rubbish tbh.

I'll called and cancelled my booster, which I've fought tooth and nail for 😡😭

Also, my clinical nurse called back to say stop Tocilizumab and Metoject injections for at least a week, or until I'm feeling better. Good job I didn't do my Tocilizumab yesterday!

[Mouseling]

Hi I am on Tocilizimab too. I have my injection every two weeks, due to getting low blood platelets if I have it once a week. I have no letter about having the vaccines or booster, whether from the Gov.org, GP or Rheumatology team. The only reason I knew to ask for a Third Primary Vaccine was because I told the nurse at the hospitol I have RA and the type of medication I am on. She said you are on immunosurpressants so you need a 3rd Primary Vaccine.Information is totally inconsistent from different Rheumatology departments. I would suggest that you hold off having your Tocilizimab today and see how you feel once you have your vaccine booster tomorrow. It seems as though most people feel any ill effects over the day/night and next day.

It is OK to have your Tocilizimab on a later day. I don't know if your Metoject has to be on the exact day.

I haven't had had any reactions to the vaccines other than a sore arm, and unfortunately I can't remember whether I was due to have my Tocilizimab the week I had the vaccines. I would however have chosen not to have the Toci at the same time as the vaccine. Sorry that is probably all a bit long winded! All the best 😊

[Moomin8 in reply to Mouseling]

Thank you for your comprehensive reply - perfect! I think I will leave Tocilizumab today and my methotrexate Saturday. Have you asked the question, of your rheumatologist, as to whether to stop any medication if you test positive for Covid? I understand that Tocilizumab is one of the medications given for Covid patients 🤔

[Mouseling in reply to Moomin8]

No I haven't asked that question. I am aware that toci has been used to treat patients. I have spoken to a lady who works for the NRAS Charity and is on Tocilizimab. She had Covid a few weeks ago. You could talk to her about this. Take care 😊

[Moomin8 in reply to Mouseling]

Thanks 😊 I just tried to call, but they're not back until 4th January - rightfully so, because they are fab 💕

[allanah in reply to Moomin8]

See my reply above and chat to rheumy department I was given different advice !,🤣

[aliplayspiano]

I am on tocilizumab. Inject once a fortnight because it has the effect of lowering my neutrophils too much otherwise. I’ve had four doses and have always tried to leave at least a week after vaccine before taking next dose of toc.

[Brushwork]

Hi Moomin, I’m on Tocilizumab and had my Tocilizumab injection the day before my 3rd primary, it was all fine. I have booked my booster (4th jab) for 8 Jan. Sorry to hear about your positive Covid test, hope you stay well. It changes things as I believe you would be advised to not have the booster for a period of time.

Go gently and safely.

[Moomin8]

Thanks 😊 I think it's a 28 day wait after Covid - so, so frustrating!! I've kept safe all of this time. It must have been family on Boxing Day 🤔

[Hidden in reply to Moomin8]

Hello. How are you doing? Are you feeling better?Just to say I never heard back from 119 but I finally got a letter from the hospital I see my rheumatologist at stating I needed my fourth jab and that my 3rd was incorrectly recorded and that I could take the letter to any walk-in centre, use the National booking system (does NOT work) but also that I can ring the hospital’s own vaccination centre to book a jab! Maybe you will still be called?

I hope you managed to re-book through your centre anyway though?

I still don’t have a letter regarding priority access to treatment though…

I hope you are feeling better xxx

[Moomin8 in reply to Hidden]

Great news regarding your 4th vaccine! 🥳

I called the vaccine centre, where I had my 3rd vaccine, and they said I can have my booster anytime after 28 days post Covid. I just need to call them and they'll put my name on the list 🤞

As for Covid...I'm not great, but could be worse. I think I have a sinus infection, so I've arranged a GP callback this morning. We'll see what they say.

Thanks for checking in on me 😊x

.

[Hidden in reply to Moomin8]

Glad you can get it re-booked and very glad you replied - I was a bit worried as I hadn’t seen you post in a while.I hope the GP call-back is helpful and I hope you feel much better soon x

[Moomin8 in reply to Hidden]

It's lovely to know that you are thinking of me 🥰

[allanah]

I'm on tcz arava and steroids and have had 4 boosters. I was asked by the rheumy nurse have you had your full course ie 4 jabs when I was having my tcz, I said yes, she replied oh I would have given you it now if not!I said at the same time as tcz , she said yes it doesn't affect it ...just my experience xx