Shingles and GCA

[christine2715]

Nearly 3 weeks on and still have shingles and its now 5 weeks since I had a Tocilizumab injection - I am not allowed them until the shingles clears up. Feeling miserable and very tired and not sure if the tiredness is the GCA creeping back in. Having bloods on Friday although the consultant said dont worry until December. GP told me to get bloods. I am very frightened of a relapse of the GCA. Its very scary when you take a new drug and although it has worked really well for me - no one seems to know the long term effect or if I will be able to stop taking it. Consultant said if I stop taking it to see how I get on I will not be able to get it back because of funding. I am so fed up with constant illness, I was making real progress until the shingles kicked in. Sorry to complain but am having a bad day. Shingles still very painful with nerves really on edge. Soldier on ....

[CT-5012]

So sorry you are having to cope with shingles as well as GCA as my rheumy said shingles pain is hell. Amitriptyline worked well as a pain med for me. Hopefully those with more knowledge than I will be along soon all I can offer is sympathy and hope you will improve soon, all good wishes and a gentle virtual hug. 🤗

[SheffieldJane]

Oh Christine how utterly miserable! You have all my sympathy today. X

[bunnymom]

That for sure is a miserable combination. One more thing does seem like the last straw doesn't it? Hope you find some joy somewhere today 🌸

[Sho-Sho]

That is such bad luck, it's miserable enough to have GCA alone but then to catch shingles on top of it and also not to continue for the moment with the Actemra is so disappointing for you. I have Had GCA for the last two and a half years, I haven't had Actemra, just prednisolone and I would have thought as long as your pred dose is sufficient there is no reason to have a flare-up. How long have you had GCA and I wonder what level of pred you are on?

Hope you feel better soon.

[christine2715 in reply to Sho-Sho]

Have had GCA for 2 1 /2 years . Now on 3 mg pred.

[Sho-Sho in reply to christine2715]

You have done well, I am still on 7.5 and stuck at that level, still v. Fatigued and feel grotty if I try and do a little too much. Do hope the bout of shingles doesn't set you back.