I have been advised I have mild adrenal insufficiency and there is no reason for concern. Via a letter my rheumatologist “told me off” for increasing my pred my 5mg over Christmas. I did this because of a flare and dropped back to 5mg after a week. He said and I quote” it makes it very, very hard for us to reference a base line”. He also said he expected me to be on a lower dosage by now.
He wants me to drop by 1mg every four to six weeks. I want to drop by half a mg every four to six weeks and I have emailed that suggestion to him. Have a feeling he won’t be happy but I don’t think I am being unreasonable. Any comments please? Thanks
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Rosina1871
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my gp of 25 years has just retired. She was brilliant. I’ve not got to know the other gps yet. Will see how my rheumatologist reacts. I have an appointment with him in May. I think half a mg every 4 to six weeks is a very reasonable suggestion. I explained in the email to him why I upped my dose for a week. I don’t think he’s used to anyone making suggestions
I think you are being more than reasonable and I can't imagine anyone thinking otherwise. Only you know what symptoms you got as you reduce and how much you can tolerate.
I have been reducing by 0.5 mg only since getting down to 6.5 mg. Recently it took me 14 weeks to drop from 1.5 mg to 1 mg and I am currently reducing to 0.5 mg and it's taken 15 weeks so far (I am now 5 days on 0.5 mg and 1 day on 1.0 mg and will probably do this again one more time depending how I feel). I have been on Prednisolone since the beginning of December 2019 and I have been reducing steadily ever since without a flare. Slow tapering allowed me to have an excellent quality of life. I have some shoulder pain at the moment (one side only) which is not PMR-related (it may be Prednisolone-related, or simply something that would have happened anyway given my propensity to carry heavy bags around). I am seeing physio about it and doing exercises.
We are currently on a skiing holiday and I have done 3 days of skiing without any DOMS (to my surprise). I do try to stretch very well every day and only ski for three hours.
Given the mild adrenal issue, I would take it really slowly now and keep checking how I feel with each step. I hope it all goes well for you; stand your ground, you are doing the right thing.
just as a follow on, I have emailed this to my rheumatologist . I think it’s polite
Thank you for your letter regarding the short synacthen test. Appreciated..I just want to mention the reason I raised my pred by 5mg to 10mg over Christmas. I started with a pmr flare and in an effort to prevent the inflammation building up further I upped my dose by 5mg for one week then dropped back down. My symptoms have settled since.I am trying to reduce my pred very, very slowly so I dont have another flare and currently I am on 4.5mg which I would like to stay on for a month to six weeks and then reduce by another half mg. I very worried about GCA and pmr coming back with a vengeance , hence the extreme caution on my behalf.I hope you understand my caution. I obviously would like to be off the steroids as soon as possible but am very afraid of being back to square one.Thank you for your care and concernKind regards
I am having a battle at the moment with my doctor and rheumatologist I think they hate it when we question them and the thing I hate is have you been reading Dr Google again.
thanks. I’ve emailed my gp as well as the rheumatologist letter was sent to them also. I just wanted to clarify the situation so that they heard my side of the story
Well said. If he doesn't understand I'd cut him loosen and hopefully find a GP that will support you in self management. My hackles went up reading your post.
I was referred to a rheumatologist 4 years into PMR after slowing reaching 10mg (started at 40), following the great advice on 5this site. She delivered the same type of message. Unfortunately, I tried to reduce faster, not at the pace she recommended and ended up in a major flare, from which I've never fully recovered. It's now 4 years on and I've yet to reach 10 mg again. I've been reducing slow and steady by .5 mg since reaching 17 mg , often repeating steps, and still get occasional flares. My GP now asks what dose I'm on and gives me the prescription.
Granted, I'm a weird case, however, in my humble opinion, you need to do what your body and your experience tells you to do.
Sorry if I seem too blunt, but my hackles are still up!
Thanks for reply and I’m sorry you have had and are having a rough time. I’m not looking forward to my appointment in May but there is no way I’m going to reduce any faster. Hope my GP will support me . I have advised the surgery of my feelings and asked them to put it on my record. Good luck
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