Another visit to Rheumatologist…

[Bramble2000]

Hi, I had a face to face appointment with my Rheumatologist yesterday. My ESR has increased to 97 and CRP 38. He said he’s very concerned about this 🙄. I’ve had 8 injections of Adalimumab since I last saw him for Ankylosing Spondylitis. He has stopped the jabs because he says they aren’t working. I FEEL they are working. I said it was a complicated picture because of the PMR. He said again that I’m too young so it must be something else that’s causing the inflammation. Because I had such a lot of side effects from the steroids, he wants me to start 5mg of Prednisilone and increase to 7.5mg if necessary and increase until I get relief. He’s sending me for a load of blood tests and urine tests. He didn’t tell me what they are for. They are all looking for cancer. What’s frustrating is I’m certain (given it was clearly shown in the PET/CT scan), that it’s simply PMR. Again he didn’t tell me not to stop the Prednisilone suddenly. In fact he’s never said that. If the inflammatory markers don’t come down with the Prednisilone he’s going to repeat the CT. I guess my question is at what strength and length of time would I need to have been taking the Pred before I can no longer just stop it? Many thanks. ☺️

[DorsetLady PMRGCAuk volunteer]

Not sure we can answer your question.

Unfortunately there seems to be no set limit on how long you can safely take Pred without having taper off, and it would depend on the dose of Pred as well.

Some conditions, like an allergic reaction, may only need a short course - and the time quoted seems to be around a month …but that would be starting at a higher dose than your Rheumy has suggested - and then maybe reducing over the last couple of weeks.

I was prescribed them - long after GCA - when my ESR skyrocketed and GP assumed the worse. I was told to take 40mg initially and reduce to zero over a month. I actually started at 20mg because deep down I knew it wasn’t GCA and then reduced. No problem.

But we usually say once over the physiological dose [5-10mg equiv] around 3 weeks, no longer than 6 weeks. But it’s probably an individual thing as well.

[Bramble2000 in reply to DorsetLady]

He’s treating it as PMR even though he says I’m too young.

[DorsetLady PMRGCAuk volunteer in reply to Bramble2000]

Yes I realised that.. and I know you don’t get on with Pred so I guess you’ll have to see how things go. He’s obviously starting you low, hoping it mitigates the side effects somewhat and then increasing as necessary . Hope it works.

[Bramble2000 in reply to DorsetLady]

Thanks ☺️

[PMRpro Ambassador]

It is usually said that after about 4-6 weeks on pred that adrenal function is compromised and tapering is required. It very much depends on what the dose was but 4 weeks at above 10mg will have some effect and take a couple of months for a safe taper,

And I repeat - you are NOT too young but he is obviously totally blinded to the evidence of the PET-CT. If there is inflammation in the right places - it is PMR.

[Bramble2000 in reply to PMRpro]

Indeed. It’s infuriating 🙄