Rheumatologists idealistic tapers

[Susan1705]

Thank you for all the advice I support I receive from fellow PMR and GCA people. From the links on the site and especially the stories/advice you all have to share. It is so helpful when encountering GP and especially rheumatologists to be able to ask the right questions and challenge suggestions. I am so much more confident defending the tapering for the sake of tapering and actually managing both PMR and GCA. Also, when you tell them the level you are on they always looked shocked and in the past made me feel as is I was a failure. One rheumatologist in past consultations when on 7mg told me my level of steroids was giving her heart palpations!!

I had an appointment yesterday 4 months after previous and by their schedule should have been down to 5mg. When I told her I was actually on 11mg, I just told the rheumatologist that it was not about relentlessly getting down to 0, he was there to manage the symptoms of my disorder. Also diagnosed with GCA in June and going from 60mg to 5mg 10 months was probably reckless and counter productive. Thank you again x

[PMRpro Ambassador]

"One rheumatologist in past consultations when on 7mg told me my level of steroids was giving her heart palpations!!"

Dear me - she obviously needs some medical investigations!!!

And how did the other one react!

[Susan1705 in reply to PMRpro]

He was much better overall, and agreed that the suggested tapering is often different from reality and I rightly questioned it. The trouble is they are all so different. When I just had PMR I was under the GP rheumatology clinic where they buy in specialist to save on hospital referrals. I saw the same person each time and their approach was most people with PMR have it for at least 2 years and speeding through tapers often led to relapse. It was finding the balance and keeping me on certain levels eg was on 7mg for 3 months. Now have GCA back under the hospital, have to stand ground a bit more and be a bit more informed

[PMRpro Ambassador in reply to Susan1705]

Continuity of care is SO important - and would actually save the NHS a fortune.

My first rheumy appt many years ago was with a consultant - he did a full history and physicial exam (well, 85% compared with what I'm used to here but hey-ho) made a few decisions and sent me for for tests and with 6 weeks of pred to get me through a business trip to the USA. I returned about 8 or 9 weeks later for follow-up and assumed I would see him again for as assessment of the test results and pred - less than 6 hours after taking 15mg I could move without pain and do stairs normally, not on hands and knees, and within 6 hours of missing the first 5mg pred dose I was as bad as before and in bed in tears. No - I saw a minon who repeated the previous appointment move for move and then informed me he'd no idea at all and would have to fetch the Boss. It then transpired he was a "GP with a special interest" - something I could have had in my GP practice had I known which to go to. One or other of those appointments was a total waste of both my time and money (it was at a hospital 12 miles away not the one 200 yards away) and their time when they could have seen someone else. I had assumed that I would see the "expert" until I had a decent diagnosis.

He was pretty useless as it happened - I never went back as by then I was about to move here and his desired approach required consultant supervision as HE was quite sure it was an inflammatory arthritis - partly because he refused to listen to MY report of the effect of pred and also wasn't interested that I had no joint problems as such either.

[Susan1705 in reply to PMRpro]

Much better!! He was the most thorough I have seen and actually increased pred to 20mg for 2 weeks as keep relapsing with PMR. Ironically the consultant with the heart palpitations was the one I saw in hospital having diagnosed me with GCA and put me on 1000mg pred each day for 3 days. I did comment that her heart must be ready to explode!! I also pointed out that my appointment was about me and not her.

[PMRpro Ambassador in reply to Susan1705]

Like it!

[mackerelboats in reply to PMRpro]

Just this week I was told by a Rheumatology Nurse that I should be down to 10mg of Predisolone by now if I had followed Rheumatologist instructions. I said that I am now on 12mg as I have been listening to my body. She then went on to say to take Methotrexate. I refused. I will never forget losing my hair and looking like someone from a concentration camp. I had enough of poison going into my body when having Chemotherapy. Peripheral Neuropathy, a legacy of my Chemotheray has got worse since being on Predisolone.Also I have Psoriasis which I have never had in my life pre Predisolone.There is only so much our bodies can cope with at times. As someone who appreciates each day since surviving Cancer, I am now getting very depressed. Life, at times, stinks!!!!

[DorsetLady PMRGCAuk volunteer in reply to mackerelboats]

It does sometimes, and not helped by an inconsiderate medical person.

[PMRpro Ambassador in reply to mackerelboats]

If they dealt with their patients as a person and not something in a textbook it would serve us all much better ...

[Susan1705 in reply to mackerelboats]

Luckily my brush with cancer was 25 years ago, sorry you are having a hard time

[mackerelboats]

I have just read your profile and it is very interesting as I had a flare after my second Pfizer jab on 10.4.2021. Feeling sorry for myself at the moment as I feel I am getting worse not better.

I had a face to face with a G.P. on Tuesday. My blood pressure is high. 174/87. It is usually good. Predisolone certainly is a gift that keeps giving!!

[Temoral in reply to mackerelboats]

I had a bad reaction to the Pfizer booster too ...had to increase pred. Took a while to stabilise. I wonder how many people have had reactions of different kinds...not sure I will have the 4th...

[PMRpro Ambassador in reply to Temoral]

I had a flare of PMR symptoms after the second Moderna jab - nothing at all with the third jab which was Pfizer. If you are scared of the vaccine - what do you think might happen with Covid if the protection due to the vaccine has waned as they are saying it does?

[Temoral in reply to PMRpro]

Yes...take your point...not scared, just weighing up the arguments...not been called yet anyway, so time to consider.I had to go right back to 40mg last time and on slow taper to 8.5 now, so living in hope.