During my first visit with Rheumatologist, I asked how to handle symptoms if they returned during tapering. I suggested that I go back to the last dosage that worked plus some, as I have read here. She said no, that I should go to Emergency at the hospital with the thought that they would inject me with a large dose. lt seems to me, by what I have read, that this would only be done in extreme cases. My question is, should I go that route because she has given me no alternative, it doesn't necessarily mean they are going to do that, but if they do, how would that help in the grand scheme of things? Will a large dose zap the inflammation that has accumulated? Afterwards should I expect to stick to the tapering schedule I was previously on? Would it do more harm than good? I have my 2nd appointment this Thursday and I feel the need to broach the subject. It will be difficult as she is very dismissive but I feel I need to hear her reasoning behind that thinking. Any advice would be appreciated.
Hospital and large doses of Prednisone?? - PMRGCAuk
Hospital and large doses of Prednisone??
Is this the same one that upped your dose a couple of months ago? If so, she doesn't seem to fully understand the treatment protocol that well.
Guidelines [and only guidelines so open to interpretation] usually say initially back to previous dose. But as we know that isn't always enough , so our advice is usually to add 5mg to the dose you last felt okay for 7-10 days, although you can stay for up to 14 days without impacting on your current tapering regime.
A very large increase as suggested is not a routine approach for PMR, maybe more so in GCA [if you have sight issues certainly]- certainly in most countries, and I'm not sure how your local hospital will view it especially if it happens regularly.
Should that happen...then it's a one off - and yes could could go back down to just above the dose you flared.
But not sure it's the best way...
Yes, it is the same Rheumatologist. I just can't fathom walking into ER and telling them I have a headache, explaining GCA to them and that I would hope that they give me Prednisone to handle it, especially when I have the means to do that myself sitting in my drawer at home. That headache would have to be pretty unbareable before I'd even step foot in the place and take my place in the 8 hour plus long wait line. It seems counter productive when I have the ability to nip it in the butt before it gets worse. I wish I knew how to approach her. If seems fairly simple to me - if symptoms return, than the dose you are at isn't handling the inflammation and it is accumulating. Going back to 5mg. higher than you were at when you last felt fine for 7-10 days would hopefully take care of that accumulated inflammation. Start tapering again but maybe slower. I really doubt she will give me the time of day should I attempt to explain it to her that way. The hard part is that she is the "gatekeeper" to my source of Prednisone. Feeling stuck. I guess the only thing I can ask is for her to expand on her reasoning.
The fact she is gatekeeper to your Pred does make it difficult, so you are a bit stymied as to what you can do... you could ask her to explain, but she doesnt sound like the explaining kind, which places you between a rock and a hard place..
What are you chances of finding a different one?
You write so sensibly and have outlined such an excellent course of action I have more faith in you than your rheumatologist! Do you have a good relationship with your GP so can get the Pred you need? Can you change your rheumatologist? 😀
Sylla123 I would ask for a second opinion ,, you are entitled to that ... I did when the doctor didn't find PMR but under active thyroid , (which I did have) but shouted at me when I wanted to ask a question and I just got worse not being able to dress myself ... She had missed diagnosing PMR !
I don't agree with her I'm afraid. For one thing - that is NOT what the ED/ER is for, it is to deal with life-threatening emergencies and sudden, serious needs. That is her being lazy and not taking responsibility for HER management of patients.
You should be tapering slowly and mindfully - being aware of your body and your PMR/GCA. Tapering the way we suggest means you shouldn't get into the sort of situation that NEEDS a large injection of steroid. Her concept of tapering is a bit strange - a fixed idea and that rarely works in either direction. You had been tapering quite fast but successfully, there is no need to go backwards, For example: If 20mg for a month has been fine, the next step is to try 17,5mg for a month. If that means you get niggles of pain and symptoms you recognise as being "your" GCA, then you go back to 20mg, possibly have a week at 25mg before going back to 20mg, but you may not need it. You don't need to rush off to the ER in a panic to get a big top up - and to be honest, I doubt most ERs would think of it that way either, They might give you a few days higher oral dose but not an infusion of a high dose.
The ideas that we have heard from some Canadian rheumies do suggest they went into rheumatology for a quiet life where they can pass their problems to someone else.
I was writing my reply above while you were penning yours. I absolutely agree with everything you have said. I'm not the type to go running to the ER or to the doctor for that matter, for anything other than an Emergency. Before this I hadn't been to the hospital since the birth of my now 31 year old son.
If you can't change rheumy - have you got a more sensible family doctor?
I'm afraid not. Just as bad if not worse. I guess I'll have to see how this week's appointment goes. If not well, I can only hope that I can get a referral to a different Rheumatologist under the pretense that I'd like to see one that is closer to me location wise. This one had moved her practice further away than I was initially told but she does do virtual appointments which makes that reason for referral less palpable. Stresses me out having to deal with either of them but it'll have to be done.
Also you can pick up other problems while waiting in ER!
I don’t know what your Emergency departments are like in Canada but I cannot see the NHS being very happy with anyone with PMR turning up at the hospital every time they had symptoms after tapering.
How irresponsible of her to tell you to go to the ER.
Tough for you though. Can you take someone with you that you can prep beforehand who can ask the questions you want answered. If I went with you I would be saying that it feels morally wrong to take up time in the ER when you can self manage yourself etc etc.
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