tapering pred

[Lemonsorbet21]

hi I’ve had pmr for just over 18 months and since then have been diagnosed with osteoporosis, cataracts on both eyes, had a mini stroke in may and am battling with pressure tapering withdrawal symptoms! I’m diwn to 3/12 &4 alternate days but can’t seem to get lower without the deadly fatigue, that awful doom feeling in morn and I’m starting to feel nauseous and don’t want to eat much. I’ve had a morn cortisol blood test a few weeks ago and dr said it was borderline? He said they don’t do adrenal function tests as routine so I’d have to get that privately. Any suggestions on what I should or could b doing would b welcome. I’m almost pain free at mo, few aches if do too much. Any opinions about Risindronate infusion would b helpful as dr has suggested this but I don’t like the sound of side effects and don’t want to feel any worse than I do now. Thanks

[PMRpro Ambassador]

"He said they don’t do adrenal function tests as routine so I’d have to get that privately"

But they SHOULD do them if a patient presents with signs of adrenal insufficiency - and you are. Do you know the NUMBER of your basal cortisol test?

[Lemonsorbet21 in reply to PMRpro]

No, I don’t. I will have to remind dr of blood test to check inflammation in a month or so, I will ask. He said the inflammation was borderline as well on last results a couple of months ago?

[PMRpro Ambassador in reply to Lemonsorbet21]

Such a USELESS expression! Are the inflammation results higher than the ones before? THAT is what matters, not the actual number.

[Lemonsorbet21 in reply to PMRpro]

Dr didn’t say. I will ask after next routine blood test. My test in June serum c reactive protein 17mg/L and I’ve found the cortisol morn blood test result 376nmol/L if that helps to give any advice? My next rheumatologist appt is nov.

[PMRpro Ambassador in reply to Lemonsorbet21]

I will allow him that that IS a borderline cortisol result and under any other sort of situation a synacthen test would be advised to clarify the state of your adrenal function. However, you are still on a dose of pred which will suppress the production of cortisol so it isn't surprising it isn't at the top of the normal range.

If it had been under 100, it would be adrenal insufficiency. If it had been 450 and above that would be normal. Even being on 4mg pred you are in the upper 300s which suggests there is reasonable function there and it is very likely that by the time you get down to under 2mg it will be even better. It is thought to take up to a year after stopping pred entirely before it is all back to normal. So, patience and save your money!

pubmed.ncbi.nlm.nih.gov/286...

[Lemonsorbet21 in reply to PMRpro]

Thank u so much for advice, I will carry on slowly and cautiously.

[Lemonsorbet21 in reply to PMRpro]

I’ve just read Dorset Lady’s adrenal info and I wasn’t told not to take my pred dose before morning test?! Would this have made much difference to result?

[HeronNS in reply to Lemonsorbet21]

The pred would have raised the cortisol level in your blood. My understanding of the purpose of the test when I took one a couple of years ago was to find out how much cortisol my body was producing when pred was not in my system. (Told to stop pred for at least one day, and up to three if I could manage it, and if I remember correctly was about 60 hours without pred.)

[PMRpro Ambassador in reply to Lemonsorbet21]

Pred has cross reactivity with the cortisolassay and it might have raised it yes. What time did you take the pred and when was the blood taken?

[Lemonsorbet21 in reply to PMRpro]

Took pred about 7.30, had test at 9.

[PMRpro Ambassador in reply to Lemonsorbet21]

I doubt it would make much difference to natural cortisol, The only question is whether if cross-reacts in the assay and that seems a bit disputed!

[Lemonsorbet21 in reply to PMRpro]

I will ask gp to have another test when next bloods are done.

[PMRpro Ambassador in reply to Lemonsorbet21]

Good idea

[Lemonsorbet21 in reply to PMRpro]

Thanks

[readingbooks in reply to PMRpro]

I couldn't agree more, PRO. If anyone says "normal " to me I can feel my blood pressure rising and I politely but firmly ask for numbers. !!!

[SnazzyD]

”Borderline”, so did they offer advice, plan or info on what you need to look out for? To some extent this can be par for the course and it can take time feeling like this before the adrenal glands start to notice that the ship is sinking if they don’t do something. I had took 8-14 weeks per 0.5mg at this level just to keep my head above water. However, nobody knows in your case if it’s the adrenals that aren’t working or part of the process upstream in the brain. The Synacthen test would be a good reflection on your glands’ capability which is a good start. The doctor can’t tell this from your test. Did they tell you about signs of adrenal crisis, sick day rules etc?

How long have you been on 3.5mg/4mg? Did you feel ok on 4mg before you started? At 4mg my Synacthen test wasn’t special at all but by 1.5mg it was ok. It didn’t change anything as far as the Endocrinologist was concerned because they wanted the adrenal axis to continue with being challenged. I declined their plan of 1mg per month on the grounds that I had to function. However, but they did try to educate me on when to suffer and when to throw in the towel and get advice.

[Lemonsorbet21 in reply to SnazzyD]

No advice from go on adrenals. Been on 3 half/4 fir 4 months. I think I need to read up on a few things! What is a synvctgen test? My go checks the inflammation from blood test every 3-6 months and leaves me to tapering dependant on result. I haven’t had pain I can’t cope with since furst starting the pred but I do get some stiffness in hips and legs if I walk too much, but the fatigue is chronic. I would sleep all day if I let myself. Should I get a private adrenal test done.

[PMRpro Ambassador in reply to Lemonsorbet21]

If you can get the basal cortisol level I would wait for the synacthen test, That will indicate if it is worth it. They won't be cheap, they must be done in a clinic setting albeit as an outpatient.

The test is a chemical kick at the adrenal gland to see if they are able to produce cortisol which they should do in response the pituitary sending signals via ACTH to tell them they need to but it doesn't tell you if the pituitary is doing that in the first place.

[Lemonsorbet21 in reply to PMRpro]

Thank you

[DorsetLady PMRGCAuk volunteer]

This is link re adrenals….so maybe stick at 4mg for a while longer - not a fan of the alternate days style of tapering…and see if things even out a bit….. but if it’s is adrenals it’s really a matter of time, patience and a very slow taper -

healthunlocked.com/pmrgcauk...

[Lemonsorbet21 in reply to DorsetLady]

Thanks

[piglette]

I always ask for a copy of all my test results so that I have a backup of what happened. In UK you are now entitled to receive them by law.

[Lemonsorbet21 in reply to piglette]

Noted. Thanks

[diana1998 in reply to Lemonsorbet21]

I always ask for a print out 3 days after having bloods done.

[Exflex]

3 1/2 (3.5) mg was the dose at which I suffered from fatigue and feeling dizzy as though I was drunk. One of the GPs said it could be a virus. Based on the knowledge gained here I stayed on 3.5mg for 3 months and gradually things improved.

I tapered thereafter extremely cautiously at 0.5mg every 5 weeks, until I got to 2.5 mg, then at 0.25mg every 5 weeks… I’m currently transitioning from 0.5 to 0.25mg.

[Lemonsorbet21 in reply to Exflex]

Thank you for reply. I’m struggling to get below 4, doing anything is an effort! I’ve been trying lower but the stiffness just comes back and I I don’t want another flare. It’s so frustrating but this site is a real lifeline and reassures u that things will get better eventually, and to take ‘small steps’.

[potterylady in reply to Exflex]

This sounds like a good plan to me, when I get that low hopefully. I'm still at 30mg.

[Exflex in reply to potterylady]

I use the DorsetLady taper, meaning I introduce the new dose gradually over 4 to 5 weeks.