Side effects

[Cosmos22Marigold]

Hi all. I'm experiencing some very bad what i think are side effects from steroids. I am down to 7.5mgs reducing slowly by half mg every 5 weeks. This has been working well until the last 8 to 10 days. Symptoms are. Discomfort in the right side of my head-not pain - more numbness than anything. I am waiting head scan on 3rd Oct at last. My vision has been checked by hospital and optitian who both say no sign of -GCA. Had one cateract op on 20th August. 2nd one cancelled last week and is now 12th oct. I know there is a lot going on at the moment but not sure what to do regarding the steroids. They have affected me from the word go. Hot sweats-shakes - eyes-giddy-fatigue the lot. I was doing so well reducing until recently. Bit frightening but I'm sure its the steroids. I'm due my flu and booster jab at the weekend. Hope its OK to have them. Any advice would be welcome and if anybody has experienced these symptoms as I'm sure some of you must have. Worried member.

Sent

[PMRpro Ambassador]

It is quite unusual for PRED adverse effects to appear as you reduce the dose if you didn't have them before. You do have to bear in mind that if the underlying autoimmune disorder that causes PMR and GCA is still active, you will eventually reach a dose that is only barely managing the inflammation that causes the symptoms. I find a return of sweats and certain bits of PMR pain are the warning signs I am getting close to that dose,

[Cosmos22Marigold in reply to PMRpro]

Maybe i am near that dose so perhaps up the preds. Thanks for your reply

[SheffieldJane]

If your head symptoms increase you could go to A&E. I waited all day but was given a head CCT Scan eventually. You are aware of all the typical presenting symptoms of GCA as well aren’t you? I don’t think the eye examinations are infallible.My symptoms weren’t so pronounced and I was eventually diagnosed with Large Vessel Vasculitis by a specialist Ultrasound Scan. The signs were in the arterial cells of my left armpit ( a halo effect). I hope they work it out. I would have my jabs unless advised to the contrary. The diseases would be far worse.

[Cosmos22Marigold in reply to SheffieldJane]

Thanks for info. Most of my head symptoms seem to vanish when i go to bed then start after taking my steroids in the morning which is why i keep thinking it's the steroids. I will take care. Thank you.

[Cosmos22Marigold in reply to Cosmos22Marigold]

Forgot. Mine is only a mri scan not CCT. What is the difference as I'm not up on all these things.. Dont worry. I can look it up.

[SheffieldJane in reply to Cosmos22Marigold]

Yes I’d have to. I was in a tube for my MRI and my head was in a doughnut for the CCT. For the non scientific version we will need to Google it. 😄

Just did. So the MRI is more detailed and uses magnetic imaging and the CT uses X Ray technology and is cheaper.

My head MRI did not pick up LVV cells but the ultrasound did.🤔

Good luck with it though!

[Pixix]

My head sweats seem to be a definite sign that my body in unhappy & that I’m overdoing it. They don’t have anything to do with the weather temperature at all, & I’ve had them at levels of pred from 15mg to 3mg, but in different intensity. In the first three months I dripped incessantly, head sweats & night sweats, but I’m not convinced it was the pred, as have had head ‘leaking’ at all stages!

[Cosmos22Marigold in reply to Pixix]

Thanks for your reply. I more or less know now what to expect during this journey. It's just one thing after another but a good learning guide as we go through it. Much appreciated.

[Cosmos22Marigold]

Thanks for info. I feel as if i have all of those but of course i haven't. Very interesting and makes good reading.