Following a Synacthen test my Rheumatologist has said my Adrenals gave a very good response, currently taking 5.5 mg Pred . He wrote in his letter he would like me off Pred ASAP and will discuss possibly changing to Hydrocortisone when I see him next week . He has always been doubtful that I have PMR.
Feel anxious about this , obviously my choice. I understand his rational as we all know the double edge sword that Prednisolone is . Do I stick with the devil I know or make the leap ?
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Now you have written this, you will find related posts which may help - usually on right of screen, but sometimes under current posts - depends what device you are using.
But I think general consent of opinion is stick with Pred - at such low dose there are very little adverse effects.
Can I ask why your Rheumy thinks you don’t have PMR. … and what symptoms did you have initially?
Thanks for your reply , the GP diagnosed me but the ESR and CRP were missed when my bloods were done prior to starting Pred. All my inflammatory, Rheumatoid factors and every other blood test have always been normal . I did of course respond to the Prednisolone but then probably anybody would when feeling generally unwell .
I had extreme fatigue , a definite pain/ discomfort in shoulder and hip girdle. I have never been in extreme pain and always had full range of movement .
Inflammatory markers -depending on what study you read between 5 to 20% of patients with PMR never have raised numbers. Plus of course once on Pred they will be low anyway…
But you are correct in that Pred is likely to mask most pain, however the symptoms you did have are typically PMR -and not everybody gets them all.
Back to original question -I’d stay on Pred, reduce carefully and see what happens.
I have asked my Dr which school he is in regarding raised markers … he is of the opinion that they must be raised for a definitive diagnoses and as they were done 4 days AFTER starting Pred. He isn’t happy . Think I will go with my gut feeling to stick on 5mg .
Tough on a lot of us then - markers can be raised without being out of "normal range". Mine were. But normal range isn't what is OK for an individual - it is the range of readings found in 95% of a large population of nominally healthy adults. 2,5% are lower or higher respospectively but still normal for them.
If you already have a good adrenal response to the synacthen test - why on earth switch to hydrocortisone? It can't embellish that response! Many people find they don't tolerate hydrocortisone as well as pred and it means taking it 2 or 3x daily instead of 1x daily.
HE may not think it is PMR but he cannot know unless he has incontrovertible evidence something else is causing the symptoms. WHY doesn't he think you have PMR - who diagnosed you?
I’d want to ask what the issues are with being on 5mg and under whilst reducing. Is the risk so high it’s worth changing tack? What is the evidence that it *isn’t* PMR? It works both ways.
I had pressure all the way to reduce faster like my life was in danger from all quarters. Once I got to 5mg the voices quietened and under 5mg nobody commented when they saw I was reducing in one way or another.
Even given the "dubious" comments from doc and Rheumy as you are now at 5.0mg I see very little point or sense in stopping something that is working for you, for something different, which can/does come with its own problems.
My Endocrinologist responded in the same way. Advocating a switch to Hydrocortisone from Pred 3 mgs. This is because Hydrocortisone operates more like our own cortisol production. It is weaker and I would have been on 25 mgs divided into 4 daily doses. The gaps would apparently stimulate my Adrenals into action. I had an inadequate response to my first Synacthen test at 5 mgs Pred , which normalised when I had reduced to 3 mgs Pred. This was to be expected because my Adrenals were responding to the lack of artificial cortisol from the Pred. After discussions with my trusted Rheumatologist I decided to stick with Prednisalone. This was fortunate because I was diagnosed with GCA/ LVV shortly afterwards and had to increase my Pred dose to 40 mgs. It was difficult being caught between the priorities and focus of two different specialists. I have now reached the low dose stage again and will face the same conflicting advice. I have a Synacthen test tomorrow and as I am on 5 mgs I expect to fail it. I am still symptomatic and don’t believe that Hydrocortisone will be effective for my LVV symptoms. I hope this makes sense. Hopefully my second diagnosis is irrelevant to you, but it is worth considering if you feel persistently unwell.
I do have confidence in my Rheumatologist who has given the same explanation as your Endocrinologist. He has been proactive and this will be the third time I have seen him in 7 months , don’t believe everything said about the NHS 🙂.
Each time I have seen him he has a plan , think everyone’s comments and experience is so welcome and useful to make an informed decision . Will go with plenty of questions next week.
I hope you continue to improve this time …. It’s bugger isn’t it .
During my time with PMR I took prednisone and like everyone slowly tapered until I finally went into remission. Within a few months I had developed adrenaline sufficiency. I've had that diagnosis now for a little over 2 years and during that time I've been on hydrocortisone. What I have learned is that hydrocortisone which is also a steroid is a lower dose than prednisone so you have to take more of it to get an equivalency of prednisone. Another thing I have discovered is that hydrocortisone will act more quickly but also leaves the body quicker than prednisone. I found this out when I had an adrenal crisis and my hydrocortisone was not keeping it in control and I actually went to Google and discovered this so I tried taking one of my old 5 mg prednisone. (I later discussed this with my Dr who approved me doing this.) Prednisone lasts longer in the body than hydrocortisone and this is why you have to take hydrocortisone several times throughout the day. Since it is a very low dose steroid it might be easier to taper using it but I have personally never used it to treat for PMR.
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