Help I’m panicking

[Susanmod]

Currently on 2/3 mg of Prednisolone for PMR. Started with GCA 5 years ago then PMR about 2 years ago. Have had a prickly scalp the last week but thought nothing of it. Had a bit of cold the last week. Started with stomach ache Friday night and woke up in night feeling very dizzy and headache. Yesterday had to lie/sit down all day as so dizzy with bad headache. Could this be GCA again? Can’t see dr till tomorrow. I’m going to take a lateral flow today just to check that out. Should I hold off taking anymore steroids till I’ve seen the dr? I’ve never had dizziness before even when I started with G C A. Any ideas?

[cycli]

Sounds like it Susanmod. You are reducing so maybe go back to last dose . Others will advise better than me. I have GCA but I'm still at 27mg and as I reduce I get ghost rumblings of the GCA. I think its a reaction to reducing but I can still sense it lurking. It's a difficult journey.

[Viveka in reply to cycli]

I love the idea of "ghost rumblings" which describes what it feels like perfectly. I find it difficult to know whether its lurking GCA or Pred or, in my case, migraine getting in on the act or possibly all three. My consultant advised monthly ESR and CRP as a double check against symptoms as I taper. For me, I get rumblings for as long as two weeks when I taper (but not always) and it can happen for a few days any time in the cycle. The other thing I look out for is whether it's progressing or does it die down. As you say a difficult journey.

[cycli in reply to Viveka]

It's difficult. Like you mine die down in a few days. If they just rumble I go withit and wait Like now 2 days clear and considering whether to drop another 10% or wait a few more days and enjoy no rumbelings

[Viveka in reply to cycli]

In the first few months I was determined to reduce as quickly as possible, not helped by one consultant saying I didn't have GCA which proved to be wrong. When I saw Dr Hughes, he spoke about 'allowing things to catch up' . I pondered on this for a while and realised he meant that things were going in the right direction but I had to steady the ship (sorry I know that's another metaphor) so instead of fortnightly reductions I went to three-four weeks and tried to stop thinking about reducing or symtoms. I think too fast reduction at the wrong time puts our bodies into a tizz and if we can relax into it, things are likely to go better.

I admit that once I get within 10 days of a forthcoming taper, I still start counting down the days. Also I get scared when I get rumbles that come out of nowhere - so far they have gone down again but who knows, the lower I go: The Journey continues...

[cycli in reply to Viveka]

these consultants are sometimes a joke. How on earth would they know. I was at 30 4 weeks ago. down to 27.5 now after 2 weeks and considering dropping to 25 but just might wait another week. Want to be off it but don't want to rush.

[PMRpro Ambassador in reply to Viveka]

That's interesting that Rod Hughes uses the same expression as I do! Gives me confidence that not rushing is approved of by a good doctor.

[Viveka in reply to PMRpro]

I didn't understand when he said it - I thought it was some technical advice. I asked him to explain 'what was catching up with what' but he couldn't - in the time anyway, it was the end of the session. But when I reflected later I understood - it's an approach to the process; working with what's happening in the body and with the meds, accepting, relaxing, and finding a positive pace that works, rather than pushing too fast. We need doctors who can sense the whole person as an individual as well as understanding and applying the clinical perspective. Rare birds.

[PMRpro Ambassador in reply to Viveka]

Yes - and adjustment of body systems doesn't happen immediately, can take weeks. And if you are rushing down the doses, it also takes time for the inflammation to build up enough to cause symptoms - it doesn't jump up and down shouting in the first few days! By the time it registers you could be 2 or 3 reductions further on - so where exactly did it go wrong?????

[Viveka in reply to PMRpro]

That's probably why he advised me to have monthly blood tests. Oh, and I should have mentioned, perhaps he got the 'catching up' idea from you. X

[cycli in reply to PMRpro]

that's what I am wary of now I am reducing. 2 days good sleep and waking at 5 am is the best in a while. Think I will stay here a few more days and see if it continues before dropping again.

[PMRpro Ambassador]

If you really feel that unwell and the lateral flow test is negative - don't hesitate to go to A&E and even call 999 if you can't get there under your own steam. There are other things it could be - but you do need medical input I think.

[jinasc]

Follow this link to the FAQ's and read up on it.

healthunlocked.com/pmrgcauk....

[Carriemetz]

In my slow (since early 2029) weaning off of the miracle pred that gave me my life back, I’ve had a recurrence of the ‘prickly scalp’ every now and then - and occasional dizziness, usually when I turn over onto my right side at night. I take it as a warning and slow right down in my dsns pred reduction. The very pleasant rheumatologist I have to do with wd clearly like me to be at zero asap and is pursuing this - but I have a gd stock of pred and go my own way! I’ve been at 3mg for a very long time and intend to stay there until I'm certain my next half tab doesn’t kick off a tender scalp - or any other GCA symptom I recognise. One day we’ll get there, but there's no rush. Good luck, Carrie.

[Carriemetz in reply to Carriemetz]

2019!!!! 😳🤣

[cycli in reply to Carriemetz]

sounds like you've got it sorted Carriemetz

[piglette]

I do find that I have light headed feelings which I believe is caused by the adrenal glands. I often have to sit down as I am afraid of passing out. Have you checked your blood pressure when you feel dizzy? Mine drops like a stone. I do not have headaches though.

[SheffieldJane]

Dizziness can be a sign of adrenals struggling. Maybe you should consider a Short Synacthen Test, to ensure that your adrenals can work?