Feeling unwell

[Alice70]

I have two questions has anyone been unwell after RSV jab . Secondly I've been feeling so sick panic weak haven't been able to eat for three days now I wondering weather I have dropped prednisalone t wo quick ,I have been up and down on prednisalone for to two years I have managed to come of them except for the last 5 mg ,I have been on 5mg for the last 2 years as a maintenance dose ,I drop to two and half mgs to one quarter mgs by cutting a five in two four with my pill cuter, i did this within ywo weeks any thoughts on this would be welcome

[Adorable1]

Hi Alice70

So sorry I can’t give you thoughts on this as I’ve no idea but wanted to say really hope you feel better soon …and I hope you get the answers you need

[Alice70 in reply to Adorable1]

Thank you

[oldtimer2]

The final stretch of reducing steroids is the hardest. Take your time. Don't try reducing too quickly. You may need to stay on a slightly higher level for several days and only reduce when you feel comfortable to do so. I usually reduce the last few,milligrams every three or four days. You can ask for 1mg tablets. Good luck!

[Chester1975]

Sorry to hear that you aren’t feeling too great. When my rheumy used to prescribe steroids it was always 4 tablets a day for week one. Three tablets per day week two. Two tablets a day week three and one tablet a day week four then stop. ☀️🥰

[RAGuy]

Hello Alice70

Yes, I think that was too quick. In my experience it was two weeks on each reduction of 1mg, but the last drop from 2mg down was by 0.5 mg. That means it took me more like 4 months.

Reducing any of your meds should really be done with medical supervision, although I do understand wanting to come of steroids. An amazingly effective treatment but not for long term if it can be avoided.

Take it very steady, especially over the last bit and hopefully it will be a lot easier for you. And see you GP if you can. It doesn't matter if you have to wait weeks, you cannot rush this anyway. You will probably only be down to 4ish mg anyway!

Good luck and best wishes

[Doodlereggie]

hi

I will answer question one first as it is so fresh in my mind!My neighbour went off quite happily to get his RSV jab,but when he drove home,my neighbour and I both saw him as he got out of the car,and he could hardly walk ,we rushed out and got him indoors,called the paramedics as he had then fallen off the chair.we watched over him for next 2 days and he was back to normal.we assume it was a reaction to the jab.I then ,being a coward,cancelled my appointment with chemists.As jab stops age 80 which I will be in 2 weeks,I thought what the hell,if I don’t need it then I don’t need it now!Second question much more positive for you .I have been on prednisone for 24 years,mostly on 10-5 mg,but since being on filgotinib over last year I have been able to reduce it very gradually,just to be careful,as I know you must reduce as slowly as you can,to give your adrenal glands the best chance of working .i have learned this from very knowledgable people on here.You have done it too quickly,if I may advise so.you should reduce by 1 mg a month,I think and then when very low dose cut a half then every month.i know it takes a while but it is far safer.they can prescribe 2.5 mg tabs plus 1 mg tabs so it is quite easy,you don’t need to cut them until right at the end.i have been on 2mg for a month,and today cut it down to 1 mg first time since 2001.Feels a bit or a miracle to me,the drugs today are so wonderful,and have allowed me to do this at last!Good luck and slowly slowly slowly is your new mantra !!

[Lolabridge]

I can’t offer any advice on RSV jab effects but I can on tapering off steroids. I had been taking Prednisolone, off and on, for a long time.

For the final 5mg my Rheumatologist advised dropping a maximum of only 1 mg per month to avoid adrenal crisis. That worked for me with no ill effects and I’m relieved to be finally off Prednisolone. Perhaps you have been dropping too fast for your adrenal system.

Let your GP know how unwell you’re feeling and whether RSV could be a possible cause.

[ageddancer]

I read a report some years ago that it is possible to "trick" the body by reducing the steroids and then UP them again for a few days then reduce them to that lower level and then do the same again over some months until eventually you can stop. I suppose that could make sense.