down to 20 mg for over month,symptons worse some days
Posted , 7 users are following.
ok ,i realize i haven,t been on pred that long, but am getting frustrated, and depressed, coming apart at seams some days, started 40mg oct 12,gp said thought i had pmr, didn,t do blood test before prescribing however, same day started, all pain in shoulders, and buttocks hamstrings disappeared within hrs, went to 35-30 within 10 days, saw rheumy, said she wasnt sure pmr, have other issues with back going on,and blood test didnt show raised esr markers, although wbc,platelets etc raised (been on pred for 2 wks by then, ) however instr to go from 30-25, then to 20 in 2 wks, was doing ok on 20 for about a week or so , saw her nov 7, said if felt the same, in 2 wks , drp to 17,5, very next day, had flare or something, because pain shoulders, butt etc returned , all that week,called her, she was going away for 3 wks, said i need to stay on 20, for time being,didn,twant to inc, or spit dose,ever since symptons present , waking in pain, only sleep 2 hrs ata time,up at 3,4 5 am, burnt out by noon, try to have rest, afternoon a little better, early eve not bad, pain returns by 10 pm,that has been going on for last 2 wks at least, today,worst day, in pain all day, tonight, can,t sleep, up with pain at 2, seems worse when laying down, rheumy back on monday, after 3 wks away, i am going to call her, i don,t want to incr, but why did i do ok for 10 days at 20, and why last week or so now waking with pain at night, and why today pain all day,, and tonight , seems to be getting worse, not better, discouraged, frustrated, depressed, etc. told my story before here, some input, but today is worst day, and tonight, really feel this getting worse, don,t know what is going on, if not pmr, and not RA, as my gp says, what is it ? Rehumy is exactly easy to talk to, bedside manner poor, very quick answeres, and doesn,t seem to be happy with my questions, no other tests other than blood done at this point, any more suggestions ?
0 likes, 11 replies
Guest cheryl74384
Posted
I am sorry for all your pain. I can only say what I have read on here before that if you increase your Pred even if you don't really want to, and the pain goes away, then its PMR. Again I think its true to say that Flare ups can happen without any particular cause its sometime one step forward, two steps back. Hope you can get to see your rheumy soon and she is more sympathetic.
amkoffee Guest
Posted
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.
EileenH Guest
Posted
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.
amkoffee EileenH
Posted
EileenH amkoffee
Posted
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??????
cheryl74384 EileenH
Posted
EileenH cheryl74384
Posted
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.
cheryl74384 EileenH
Posted
EileenH cheryl74384
Posted
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.
cheryl74384 EileenH
Posted
FlipDover_Aust cheryl74384
Posted
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.