'Interesting' steroid withdrawal plan

[Wheelygood99]

My diabetic consultant (I have Type 1) recently arranged a Synacthen test to measure my cortisol production, result normal. He wrote to my GP surgery saying 'I suggest she drops from 6.5mg to 4mg daily, then reduce by 1 mg per week then stop. If her headaches worsen, with increased ESR/CRP indication relapse of polymyalgia, she may need to go up on the steroid dose. '. I'm somewhat alarmed. He made 2 errors, I'm already approaching 4mg on the dead slow taper, and what's this mention of headaches? In response to this letter, the GP has now taken prednisolone off my repeat prescription as I will be following the plan. Wondering if I should request a review with the GP who originally diagnosed me and said I could taper by symptoms ideally at 1mg per month (not per week!). Or should I just eke out my supplies and taper as slowly as my supplies will allow?

[DorsetLady PMRGCAuk volunteer]

”interesting” isn’t the word I use…. Best not to say it out loud… I might be banned..😳

Yes you do need to speak to original GP or at least one that has an understanding of what this ‘taper’ might do.. irrespective of ‘normal’ adrenal production.

Please let us know how you get on.

It’s extremely worrying when consultants can’t get the facts correct…

[Wheelygood99 in reply to DorsetLady]

Thanks DorsetLady. While I would love to get off pred in the next month, I fear what would happen should I try. I think I will do an e-consult with the original doctor as its currently taking about a month to get a F2F appointment.

[piglette]

A diabetic consultant who knows nothing about PMR and long term steroids. This does seem to happen a lot with doctors who specialise in something, they seem to know nothing about some other aspects of medicine. As DorsetLady says you need to check with your GP and hopefully they will know the reduction suggested is just not on. I had a rheumatologist who also seemed to know very little about steroids and my GP was brilliant and just ignored him. She said ‘we can manage without him’!!

[Groggrim in reply to piglette]

At the end of last year I paid to see a private rheumatologist who suggested an unworkable taper ( I had joined this forum and had an idea of what was what) I asked her if my adrenals would cope with such a drastic reduction and her response was 'your adrenals will be fine'. I'm glad I didn't follow her recommendation but unfortunately her letter influenced my GP until I spoke with him and we sorted out a better plan which is still working alongside info from this forum.

I'm not convinced about 'specialists'

[piglette in reply to Groggrim]

My first rheumatologist was private. He used to wait for me outside the door of his rooms and give me this huge bear hug. He was a real D.O.M. I told my new female GP who said we could do without him!!

[Groggrim in reply to piglette]

D.O.M?

[piglette in reply to Groggrim]

Dirty Old Man

[Groggrim in reply to piglette]

😳 I once had a chiropractor like that. I got scared of him and there was no chaperone, ugh

[Jackoh]

I would definitely see your GP that reduction plan is ridiculous and dangerous. Don’t use up your excess supplies- you never know when you might need them!! 💐

[Zebedee44]

That’s a crazy taper schedule and could leave you very unwell. My own GP is happy for me to stay at 3mg despite a satisfactory synacthen test.

Interestingly, He did say that if I really had to get off pred for any reason I could do a fast taper of 1mg a week from that dose but I would feel very unwell while doing it. Personally I am not prepared to try it.

Do you still have symptoms of the original PMR? Or are you tapering slowly through the adrenal recovery stage?

[Wheelygood99 in reply to Zebedee44]

I have formulated a response on the e-consult ready to send on Monday am. I am wording it so that I am not directly criticizing any doctor but asking for the original GP to review the situation. Thank you for all your replies confirming what I felt.

[Charlie1boy]

Just to endorse what others have said to you. A crazy proposal!

[PMRpro Ambassador]

No, definitely not the word I'd use either!!!!! Nuts.

[Ginntonic]

I’m new to PMR but I have been on medication for another condition all my life and I always tell them I need more before I do so, so that I have a good stock. So I suggest do not eke out your supplies but tell them you need more now. Say you need them and don’t mention you have a current stock. It’s not telling an untruth because there is ‘ need’ as you must keep a good supply for the future, eg holidays, cannot get to the pharmacy, mental security etc.

I hope you get to see someone who knows what they are doing!

I currently have boxes of Preds plus my usual medication in my cupboard.

[Sharitone]

Two mistakes? Are you sure it was your notes he was reading? When I first visited the rheumy, it was fortunate that he gave me a prescription because the hospital pharmacist noticed that it was for the wrong patient. It was a 'sticky', so presumably he must have had someone else's file open.

[Wheelygood99 in reply to Sharitone]

Mm, interesting thought, thanks.

[Groggrim]

I hope you get this sorted out and you will be all right.

[Wheelygood99 in reply to Groggrim]

Thank you. Yes I hope so