Rheumatologist tapering schedule

[811Yoga]

I was diagnosed with pmr may 2023 by GP and saw rheumatologist 10 days later but by then symptoms had settled and he gave me a schedule for tapering. I had a blip and January this year when I was under a lot of stress and my CRP and ESR rocketed. I had a gastroscopy and colonoscopy but nothing was found and I was referred back to my GP. I watch and wait policy was adopted. My markers halved in three months and continued to go down. However since going below 5 I have add many aches and pains around the hip. Saw my rheumatologist tenth of August he said pmr had gone despite having difficulty bending forwards getting in and out of a car. I do have trochanteric bursitis which is giving some pain and rheumatologist is saying that other aches and pains are due to aging. I don't know what to think as I certainly had no aches and pains before I started pred. I live in North Dorset does anyone know of any rheumatologists in this area who may be able to recommend some way forward I was at the moment I'm just being prescribed a lot of painkillers. Currently I am on 2 milligrams of pred that should be down to 1 mg according to the rheumatologist. I have been keeping to the rheumatologists schedule which doesn't seem to be in line with the GP schedule. Anyone have any advice please.

[PMRpro Ambassador]

I have to say, I find the willingness to prescribe tons of painkillers that don't achieve much while refusing to prescribe a low dose of pred that does very strange. As for how any rheumy can dictate that PMR has "gone" after barely a year beats me.

Were you really better on, say, 5mg pred? Or did you need more to achieve a good result?

Is Chertsey an option? Rod Hughes there is reliable, listens and understands PMR and its diagnosis, including confounders.

[811Yoga in reply to PMRpro]

Thank you. Yes I was better on 5mg. Chertsey isn't an option. I certainly need to know more about adrenals waking up and side effects whilst this happens as per another post. Seeing GP next week so will see what she has to say.

[piglette]

From what you say it seems that your PMR is causing problems. I am so impressed with these rheumatologists who can diagnose that ‘the PMR has gone’ based on their crystal ball. It does sound as if you are currently on too low a level of pred. In addition your adrenals will need to wake up as you cut down on the pred. This can cause several symptoms that tend to be different to the PMR symptoms. I had the deathly fatigue for example. I think moving away from your rheumatologist is not a bad idea. You say your GP has more sense regarding tapering, could you just go through them? 75% of patients with PMR never see a rheumatologist.

[811Yoga in reply to piglette]

Thank you. I only got to see Rheumatologist privately and he didn't suggest any further tests so all disappointing. GP suggested putting up Pred way back in March but deferred to Consultant's opinion.

[piglette in reply to 811Yoga]

Your rheumatologist sounds like the first one I went to. I was just a cash cow.

[DorsetLady PMRGCAuk volunteer]

If Chersey too far - good Rheumy at Poole hospital - Doctor Khurshid. He gave a talk to the Dorset support group a couple of months ago -or what about RUH Bath?

To be below 5mg in less than 18months and with the issues you describe certainly suggests PMR has not gone. You need someone with a more sensible approach.

[KASHMIRI1 in reply to DorsetLady]

Hello DL I have just picked up your post and was interested see that you saw Doctor Khurshid he is my rheumy and I like him very much. I didn't know there was a support group in Dorset. Would you mind letting me have the details as I think it could be useful if not to far down. I am on the Hampshire Dorset border.

[811Yoga in reply to KASHMIRI1]

Hi there I have just seen your post. Is Dr Khurshid a Rheumy who it may be worthwhile seeing. Unfortunately I've seen his senior colleague who considers me in remission but I am not so sure as pain lingers on plus to make matters worse I have hip bursitis. I tried to contact Pamela Noble of the Dorset group to obtain a copy of a talk Dr Khurshid gave, if there was a copy, but couldn't reach her on the email address given.

[KASHMIRI1 in reply to 811Yoga]

I have found him over the last 4 years to be very good. I have GCA and he seems to be on top of things for me.

[KASHMIRI1 in reply to DorsetLady]

Apologies I have just picked up the details further down the posts

[DorsetLady PMRGCAuk volunteer in reply to KASHMIRI1]

Next meeting is on Monday 9th Sept if you can make it…

[811Yoga]

Yes thank you. Poole would be a good option but Rheumatologist I saw privately is at same nhs hospital as the Rheumy I saw. Cannot make it to Chertsey. Is there anywhere I can view DrKhursid's talk? I haven't seen any nhs Rheumy apart from 3 private appointments. I am due to see GP next week so will put info to her.

[DorsetLady PMRGCAuk volunteer in reply to 811Yoga]

Not sure there is - the meetings are quite informal [I didn’t attend] but if you contact the organiser she may have some information for you - Her name is Pamela Noble

Tel - 0300 999 5097

Email -

[e-mail]

[AyJayBass]

My Rheumy is Dr. Joel David who I am seeing privately in Oxford.

His tapering schedule is like this, starting on 8mg for example. Month1: 8mg every day. Month 2, every 3 days: 8,8,7 all month. Month 3: 8,7,8,7 ... Month 4: every 3 days: 8,7,7 Month 5: 7mg every day.

This could be expressed as Mth 1: O, O, O .. Mth2: O, O, N ... Mth 3: O, N , O, N .. Mth 4: O, N , N .. Mth 5: N, N, N .. Where O = old dose and N= new dose.

I started this regime last August when I was on 8mg. 12 monhs later I am on 5mg and all has gone smoothly. It is a very slow reduction but it seems to work for me.

[811Yoga in reply to AyJayBass]

Thank you. It is good to see a different approach.

[DorsetLady PMRGCAuk volunteer in reply to 811Yoga]

There are a variety of tapering options on here - all designed to make it easier to get from A to B..

healthunlocked.com/pmrgcauk...