A bit embarassing but taking the plunge to post here for some suggestions/advice. In spite of all I have read here about pacing oneself and resting I have had a hectic two weeks, childcare of two lots of underfives ( requested), cleaning up daughter's home( my initiative). Driving for several hundred miles etc to do this and a funeral in another part of the country. I now fear my GCA headaches have returned since I returned home yesterday. It may be psychological but doesn't feel like it.
I know the protocol for dealing with a flare which I have sucessfully undertaken a few times much to the concern of my rheumy. I also gather that it is not advisable to yo yo with Pred. My rheumy wanted to discharge me to the GP but changed her mind after our last appointment in June to keep me on the books until I WAS OFF PRED COMPLETELY. This feels like a pressure from her as she says I am in remission. I have responded and am in the process of slowly reducing from 3.5 mg - 3 mg with the dealine of January next appointment looming.
My options are I think to a) wait and see what happens re headaches, b) treat it as a flare risking the yo yo thing, c) ring the helpline at the hospital who will want me to have a blood test which may not show any elevated results yet.
I would be grateful for any thoughts and suggestions. It has been a salutory lesson for me
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Noraflorence
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Well having had GCA, I know what I’d do, but of course I cannot say that as I’m not your doctor.
Usinng the flare protocol is not yo-yoing as we would would describe it - it’s a short term procedure to get things back under control, and then you return to just above previous dose..sometimes you can safely go back that dose. Really depends what cause the flare.. in your case would say doing too much..
Thank you for your reply and suggestions. I am more than happy to treat it as a flare . I assume it’s ok to take the additional 5 mg today as a split dose. Again so reassuring to know that others are there for advice and as sounding boards. I feel that we are very much left to our own devices!!
What's embarrassing? Everyone has done it least once!!!
Hum - well what an uninformed rheumy!! You are in remission - drug-induced remission. Until you can get off pred for at least 6 months, she has no evidence at all that you are in full remission. Very different thing. And at this stage, it is not only the GCA but also the adrenal function creating the limits. The likelihood of you being off pred altogether by next January is pretty small.
Who supplies your pred? Is a flare protocol (5mg extra for a week at least) an option without having to fess up to the rheumy? Using the flare protocol isn't yoyoing. Yoyoing is when you let a flare get going by going to too low a dose, needing a longer period of a higher dose that you then have to taper from and then repeating that by going back to toolow a dose, flaring again and needing to do the same again. That is the whole point of the flare protocol - you catch a flare quickly and then go back to the LAST DOSE WHERE YOU WERE GOOD, not the dose where you flared as that was clearly not enough.
Hi thank you for your reply. I thought I had already replied earlier this afternoon, but it seems not. Doing it in the car doesn't work apparently. It was useful to understand the yo yo bit which I had not grasped It seems that treating a flare ideally will mean that yo yoing is less likely. Although the rheumy is not, in my books very helpful, she handed over my medication prescibing to the GP who so far have been quite relaxed and uninvolved and I have a bit of a stash for such cirumstances as I now face. Hopefully this will continue, I hasten to add that I am responsible in what I order from them!
I think one problem we have when we are diagnosed is that we are then given tablets and we assume that we will get better like with a headache or whatever. However the tablets did not cure us they just made things more tolerable and we are still ill. I also found that I would always say YES when asked to do things. I found it very difficult to say NO I am afraid I am not up to it. I really had to teach myself not to say YES.
Thanks piglette. Saying no has never been one of my skills. In this case I think it’s part of being in denial about many things including accepting getting older. Much if what I do is self inflicted!
Gird your loins and simply but firmly state that you would like to use the flare protocol that has previously served you well and that you would like her to work with you on that. 🤞
I'm in a similar position to you, except that my GCA has never flared. My rheumy discharged me on the grounds that my last blood test results were normal. However that was 6 weeks before the appointment which was changed. I explained to him how I was getting stiffness in my shoulders and hips, and had ongoing knee pain. He said it's just arthritis. He said that pred use can accelerate it. I asked him for an XRay and some physio. He obliged, but discharged me anyway - my 2 years is up!
I've since had the XRay results. Only mild arthritis in my knee and none in my hips and shoulders. I upped my pred by 5mg and all pain and stiffness went. The physio is helping to build my muscles up in my knees and legs again.
I am actually quite pleased to be under my GP now, who knows little about PMR and is happy for me to manage it myself, with the help and advice from this forum.
It is amazing how it seems that everone's experience is significantly different. Requests I have made over the past three plus years for dexascans have been refused or referred back to the GP from consultant. I have opted to try to keep my head down and just get on with it hence the questions on this site. I did not know that Pred could accelerate arthritis. Could explain some of my aches and pains although it might have masked them in the past.
I did not know that Pred could accelerate arthritis.
It doesn’t necessarily do that, it might in some cases but not all, however if the pain of arthritis is masked by the Pred then it could be deteriorating anyway and you don’t realise. Once you get to a much lower dose of Pred or finish altogether, then the arthritis pain become apparent.
It is claimed by some doctors that pred damages the cartilage, contributing to the breakdown. According to one rheumy I saw in early undiagnosed PMR, the knee pain I had was OA, "she could feel it". Not sure what she felt - but an x-ray for similar pain 13 years later showed NO signs of OA. As soon as I started pred, the knee pain improved. PMR can affect knees, causing synovitis.
And as DL says - if the pred masks existing OA pain, how do they know how much difference the pred makes? OA is common enough in our age group.
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