6 Jabs, always careful re masking up….now positive…MTX Subcut & Leflunomide

[CallMeSunny]

I injected MTX on Monday evening, started cough/headache Tuesday so tested…negative. Full blown flare today and now positive….reported it. Do others stop the Leflunomide? I should be taking it tonight before bed, so won’t take it…..hopeless trying to contact Rheumy, GP can’t advise….maybe CMDU or 111 will help when they contact me. I certainly won’t be taking MTX until all symptoms gone and hopefully I might have some connection with Rheumy department by then! Thanks folks.

[Hidden]

With the caveat that I’m not medically qualified. I take Benepali and lef: was told by rheum to categorically stop the Benepali, but that I could continue with the leflunomide if I wanted to. In my own case, I know the lef significantly effects my white cell count from the monitoring bloods, and I was pretty ill very quickly with covid, so I opted to stop taking the lef as well. I restarted once I was feeling better in myself, although that meant being off everything for almost 3 weeks in the end. If you can’t get hold of rheum, and your GP isn’t able to help, then the CMDU may be able to advise, but my understanding is if you would normally stop specific treatments with another virus or bacterial infection, the same applies to this.

[CallMeSunny in reply to Hidden]

Many thanks for your reply Charlie; as ever, your knowledge and wisdom are so helpful and reassuring to us all. I’ll rattle cages tomorrow if no one contacts me! Sue.

[Monkeysmum]

I’m afraid I can’t help re the Lef question as I’m not on it, but just wanted to say that I hope you feel better soon 💐

[CallMeSunny]

That’s really kind of you, Monkeysmum…..thank you x

[Esmereld]

there’s so much conflicting advice out there. I always stop meds if under the weather but I can get away with it. I go with my guts!. 😂. Hope you get over it quickly.

[CallMeSunny in reply to Esmereld]

Thank you Esmerald. I think many of us will have to go with our gut feelings and I have had to on a few occasions. I really feel pretty dreadful and would have really appreciated a categoric decision from my Rheumatology department.

[bpeal1]

Again seek advice from your own team but I was told there was no point stopping leflunomide as it has such a long half-life that stopping it just for a few days makes very little difference to how much is in your system. I was told the same both times I’ve had surgery too.

[CallMeSunny in reply to bpeal1]

Thanks bpeal. I’m quite new to Leflunomide and my lymphocytes have been falling since starting it (6 weeks ago), now at 0.44. Low neutrophils too, CRP at 10 Surgery rang to say white cell count is low, book a retest in 2 weeks….so maybe rheumatology will make contact to discuss…maybe!

[bpeal1 in reply to CallMeSunny]

Hopefully they’ll contact you. The half-life of Leflunomide is 21 days (ie it takes your body 21 days to get rid of half the amount in your system) however, there are washout treatments available if you need to get rid of it quicker

[Jillyanne]

I hope you feel better soon, it took 4 days for the Rhuemy team to get back to me and by that time I had sorted everything out when I had Covid 2 months the ago 🤷‍♀️

C MDU at some point you will speak to a consultant, so they should help

[CallMeSunny in reply to Jillyanne]

Thanks for your reply Jillyanne. It’s a case of fingers crossed …I’m sure the vaccinations will win!

[Green230461]

get better soon 🦠💐

[CallMeSunny in reply to Green230461]

Thanks Green….I’ll do my best!

[Jackie1947]

Unfortunately being immune suppressed we dont get such a high degree of protection of the vurus.