down to 20 mg for over month,symptons worse some days

20 milligrams is the typical starting point for PMR relief so that maybe her reasoning for not wanting you to go up. However for her to leave for 3 weeks with the instruction of not even allowing you to split your dose is just mean. Sorry I couldn't come up with a better word but it is mean. Whatever happened to the oath they take Do no harm. I would suggest you look for a different rheumatologist.

No - I know there are people who have said this but it isn't true to say that if the pain goes away with a higher dose of pred it MUST be PMR. Pred works for many different things, including other forms of arthritis if the dose is high enough. What has been taken as a guide in the past is that if a moderate dose of 15-20mg pred makes a big difference to the pain it is LIKELY to be PMR, other things don't respond as well to that level of dose. But if a doctor starts with a very high dose of pred - as cheryl's GP did, then it clouds the picture as other things will respond to 40mg. Cheryl is still on 20mg - for PMR that should make a difference. If it isn't doing so, then the rheumy has to look further.

I don't think the rheumy is being mean - I think she is doing something to try to clarify what is going on. If a patient appears already on a very high dose of pred, far too high for a starting dose in PMR, it isn't clear what is going on. The other possible diagnoses here would also respond to a high dose of pred, but in the long term  they will respond far better to other medications and with far fewer side effects. The only way to see is by reducing the dose - she reduced the dose to a level that would be expected to manage PMR, not to a lower level.

In my opinion, the doctor IS "doing no harm" - leaving the patient at a dose of 40mg/day when it isn't the right medication would have done more harm as it would then be all the more difficult to wean off it and it would take far longer before a better assessment of the situation can be made. And pred at that level potentially has very unpleasant side effects and risks - which can be justified when a patient has GCA and the risk is of losing their sight. PMR, while painful, is not life-changing in its effects in that way. 

In the majority of medical systems a follow-up appointment would be unlikely to be in less than about 3 weeks. Many patients with autoimmune disorders may wait many months before tests are completed to identify the problem accurately - and in the meantime often have to cope with considerable pain and illness. You can't just hand out unlimited amounts of a very powerful drug in the meantime because it makes it even more difficult to work out what it is you are dealing with. Until you know that - you cannot treat it optimally.

Oh Eileen you are always so rational and smart about these things. I did have a knee-jerk reaction. My reaction was due to the opiate crises we have right now and I crossed it with the prednisone thing and I should not have. You make very good sense. I bow to your expertise.

I'm afraid rational is my middle name! Sorry!!! Remember - I've been at this game for a long time, I've seen this so many times before and how it turns out. All too often it wasn't PMR - and a patient had the pred side effects for no good reason and pain for far longer than they need have done. 

Yes, it is hard being in pain - but sometimes only seeing the patient's symptoms in all their glory will lead to the correct answer. The problem all started really with a GP who didn't take a few minutes to check that what he was doing was the most appropriate action. It wasn't - and now the rheumy is the one who is perceived as the big bad uncaring person because she is the one who has to day I'm taking away the safety blanket - and THEN I will make my own appraisal. 

The opiate crisis in the USA was to some extent created by some of the doctors who gave in to patients demanding "pain relief" - they created addicts who did have pain but didn't need as much and fed habits that were created. And as a result the answer is felt to be to regard everyone as a "drug seeker" unless there is real proof and of course when you are the poor patient who really HAS got a pain problem and no medication and go to the ER - you are ranked alongside the rest of them. At least - I assume that is what you mean??????

well pain killer,s are the last thing i am llooking for, i know bloodwork has clouded things for rheumy, and understand that, however, i would still expect some kind of plan she would suggest, in the event this 20 mg, does not manage symptons, ie, other tests that could be done to eliminate other disease, for example, i had a cystocopy done, because blood in urine, test came back from lab clear, my gp said, there, don,t have to worry about that anymore, still, i would like to know then, what is causing blood in urine, only since bloodwork done in september, never had in my life before, there has to be a reason for that, so would they not go ahead and suggest some other test, to determine what is causing that ? and after last seeing rheumy nov 7, and being new to this disease, the next appt she had set for me was jan 19th, quite awhile i would say to wait and be monitoring progress of disease , and side affects, so, i will be calling her next week, and will want to see her, and hope she will make a little time for me, and suggestions, 

 

My reply wasn't aimed at you cheryl, it was replying to a specific comment that amkoffee made. No-one was suggesting you were drug-seeking.

Blood in urine can happen for a lot of reasons and they were checked for with the cystoscopy. Nothing was found. 

ok Eileen, thank you, but what i mean is, if you have blood in urine, and they sent to lab, after cystocopy, what is causing blood in urine, must be a reason, kidney problem, cystitis, something, why wouldn,t they be able to tell me what was causing that, ? i know there are lots of things that could, i want to know which one is it ?

They can't tell you until they have done the tests - you will have to ask your doctor. And if they sent tests from the cystoscopy - they take time to do. Some tests take longer than others. But no-one here can tell you - ask your family doctor.

as i said, the tests came back from cystocopy, saying all was clear, according to gp, he had report ?? and within a week apparently, when they told me would take up to 2 weeks, so, if all was clear, what is causing blood in urine, gp said done, no need to worry now about that, and i didn,t think at time to say, well then, what is causing blood in urine ?

You need to talk to your GP about the blood in your urine. We can't help you with that. We can only talk about PMR, and we can only talk about our own experiences. I would try and think about all the things you have going as seperate issues until you know if they are related or not.

I know you are in pain, but you really need to give some things time to work out what's really going on - as I keep reminding you - you are SICK, if you have PMR it's not going to go away tomorrow even if you do get the right dose of pred - it's going to hang around for at least a couple of years. You WILL feel better If  it's PMR but you can't just take a pill and wake up feeling better. It's not a cold.

If it's any consolation, I have to wait 3 months to see my rhuemy, and 6 weeks to see my GP (for other ongoing issues). I've learnt to deal with what comes up inbetween those visits, and just get on with living. Pain or no pain. At 53, I'm not waiting to live my life, I'm doing it now, thank you very much.