Rheumy said I must reduce by 1 mg a month.. 15 in July and been at 12.5 until recently.. trying to taper and feeling so rough, have gone back up.. though even then still not great!am now trying half every 2 weeks.. hoping that s not such a shock to the system! Seems sensible?! Other long Covid? symptom of muffled ears doesn’t help the dizziness! So difficult to tell!
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Worth a try…or try my slow taper plan - starting at week 2 rather than week 1 - healthunlocked.com/pmrgcauk...
Yes that’s what I’m doing. Half every 2 weeks?
When you say rough, what do you mean exactly?
Am I misunderstanding? Are you saying you started at 15mg last July and around eight months later you were on 12.5mg? You have now increased again? Your rheumy, in my opinion, has not helped much.
Tapered to 12.5 by about October and have been on that since then! Though trying to taper from time to time! Rheumy very gung ho and not very sympathetic! He hasn’t ever had pmr or been on steroids I’m sure!!!!!!Now am on 11.5 and putting up with symptoms as can lie on sofa when I want! And take my dog for shorter walks! And crossing fingers!
That isn't right. Were the symptoms under control at 15mg? How quickly did they improve when you started taking it?
Yes immediately! And have had no pain since!! Just these other symptoms
And how have you tried to reduce the dose?
Rheumy says I’m suffering from Long Covid! That covers a lot doesn’t it? When they don’t know what to say!!!
Another idiot doctor, join the club my Rheumy is the same way. Let me guess, your doctor is also saying you should be off Pred in 2 years?
I don’t know what to tell you. Ideally it would be to find a doctor who truly understands PMR and is staying up on recent findings - good luck with that, seems it’s like finding a needle in a haystack.
You can start following the links on this site, saving the documents on a computer and invest in a pdf software that at least provides highlight capability and highlight key information (may not hurt to buy a medical dictionary although normally the summary is in easy to understand language).
A couple of things, everyone is different, after my last flare I got ticked off at my doctor and told him from now on we’re following the disease and not some arbitrary timeline. If a step is too much I’m going above where I was in dose until all pain is gone, then to last dose where I was fine for a week or two and if no pain then I’d try to reduce again but at half the step. I also went away from the 4 or 5 week at a dose and going to a new dose, instead using a slow tapering 5 - 7 wk method.
He knows I read a lot, and I’ve brought copies of papers with me that counters his antiquated approach. So, I’m not just winging it and now I do what works and don’t ask forgiveness after. Don’t try that unless you really understand what you’re doing.
I strongly suggest you start reading through this site’s library!
Haven’t got any pain!! Just these difficult and exhausting symptoms… just looking at diary of 2017 when I last was on pred.. and I had this headache on top of my head then as well as dizziness etc. I had forgotten that.. And had thought it was a long Covid thing.!!! Trying to reassure daughters that we are all on our own eventually managing this decreasing of steroids! Apart from this site of course! Seems such an individual thing!!!
Hi Boss302Fan my Rheumy has given me strict instructions for a very slow taper at 1mg every 6 weeks (I am currently on 5mg). He says my GP tried to taper me too quickly and had me off pred in 7 months and I felt awful, no appetite, losing weight, tired, immense anxiety. My taper under the GP was 1mg every 2 weeks, far too fast. I a. Hoping this time I will feel better
If you are at 5mg might want to ask if can do 0.5mg steps instead of 1mg.
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