vaccines and PMR flare

[lsplumb]

I was down to about 6 mg of Pred a day. Then I got the flu vaccine. Now I'm in a lot of pain in the mornings and it takes at least 9 mg of Pred to get rid of the pain. Afraid to get the Covid shot as I usually have even more of a reaction to that one. Anyone else deal with this? And if so, how long before you can lower your Pred dose again? I wanted to get these both out of the way as I'm scheduled to start Actemra infusions in 4 weeks. Thanks for your input.

[PMRpro Ambassador]

When did you get the jab? Have you tried Tylenol for the aches - it could be partly the vaccine, partly a PMR flare? And I have to say, if you are adding Actemra, I would be quite keen to have the Covid jab. But that's me. I think you maybe should discuss it with your doctor.

I do have to ask - if you are down well below 10mg all on your own, why are you adding Actemra? At 6mg I wouldn't. Even with Actemra I can't get under 7mg.

[lsplumb in reply to PMRpro]

Had the flu shot 5 days ago and the PMR pain is not getting any better (although I've not raised the Pred yet above 8 mg). As far as starting Actemra, I'm nervous about it, but rheumy is pressuring me. Also, the Pred is doing its usual bad things to me: pre-diabetic, high cholesterol (despite low-carb diet) and worst of all, about a month ago I was hospitalized with multiple blood clots in both lungs (and then tachycardia) brought on by the PMR/prednisone. So now on beta blocker and xeralto. Hate to add Actemra to the mix of drugs, but now that I apparently need to go back up to at least 10 mg of Pred, feel like maybe I need something to get me off Pred. What do you think? By the way, your knowledge and advice seems far superior to that of any of my doctors! Our medical system here in the U.S. is definitely broken.

[PMRpro Ambassador in reply to lsplumb]

Where's their evidence it was due to the pred/PMR? Have they looked to see if there is something else beyond PMR going on? The difficulty you seem to have had suggests it isn't plain and simple PMR.

As I say, there are at least 3 different underlying mechanisms creating inflammation in GCA and probably also in PMR. Actemra only works for one of those 3 mechanisms and if your GCA/PMR involves the others, Actemra won't get you off pred entirely and 8-10mg is a common sticking point - I got to 7mg but any lower and the bicep tendinitis returns to a degree where I can't use my arms. Actemra is good - but not perfect.

The very low carb diet will help avoid getting to diabetic but for some people it is also timing of eating. Koalajane determined her critical period and doesn't eating during it - and reversed Type 2 diabetes. Actemra will send your cholesterol up too - it took me to a level that I started medication. Not statins, they make me ill.

I'm on bisoprolol and an anticoag - for atrial fibrillation.

[Sophiestree in reply to PMRpro]

was that where Koalajane didn't eat between 12 and 5..00

[PMRpro Ambassador in reply to Sophiestree]

Not sure of the times, but yes.

[Angelsmummy]

Sorry for your problems.I too was offered TCZ at 7 mg.Listening to wise advice from certain people,I did not take it!If YOU don’t really want it,then DONT!Your decision,your body.Everything must be your choice as I have learnt from this forum.I am down to 5 and 1/2 mg now,soon to introduce 5 ,maybe I will carry on being “ lucky” ,maybe not,but I will do my very best not to have to introduce any other drugs into the mix unless I have to.I wish you the best of luck in whatever you decide.xx🌼😜