pmr or not ?

I think she meant LORA, late onset rheumatoid arthritis?  Maybe?

Cheryl was started at too high a dose and is now under instruction to get her dose as low as possible so the specialist is able to make sure the diagnosis is accurate. 

40mg is not unusual for a starting dose - I was started on 50mg to, in the words of my GP, "hit it hard and fast". It certainly worked!

I tend to think that Cheryl's rhuemy is over-reacting a bit!

Actually it probably should be unusual for a starting dose if the aim is to confirm a diagnosis of PMR which normally will respond to something between 10-20.  I was miraculously cured of all my pains, even non-PMR ones after three days on 15 mg pred, and some people have responded in even less time than that.

my question is, how does rheumy or anybody diagnose your disease, if gp put me on 40mg from start, without doing any bloodwork, how do you get back to what was going on to begin with,? can,t get off pred now cold turkey, and get blood work done, how can they possibly know what,s going on when med,s are affecting blood levels, it,s crazy, just experimenting, with different doses of this drug, which does all kinds of terrible things to your body, and becomes a life sentence from what i,ve been reading, people being on for 3 ,5, 10 and 12 yrs, and then,in some cases 2 or 3 yrs down road, being told, oh, no, you don,t have pmr, what the heck , in this day and age, should be better research testing to determine, what is happening with your body, and stop guess work !

 

PMR cannot be diagnosed directly. Many other conditions could have similar symptoms. It is a process of elimination. 

It is diagnosed by the presentation of symptoms, blood markers and process of elimination. My GP also told me that if I responded to pred, that was another indication I had it!

The blood work won't tell you anything other than if you have raised inflammation markers. It certainly won't tell you if you have PMR or not.

RA does sometime present as PMR, and people have their diagnosis changed from PMR to RA as it develops over time.

My question is - did the pred work?

the first dose of 40 mg worked within hrs for pain, and continued to keep pain at bay as reduced down to 20 until, about 10days  on 20, then had what i guess would be a flare? since then which was bout 20 day ago around endof oct, or first part "nov, have had symptons back , some mornings really bad, some not so bad, still there, 2 days ago were pretty good days, today for instance was really bad for first few hrs, it,s just so unpredictable, can,t really say that the 20 which i have been on now for quite awhile, is managing pain as it was before nov 8th, before "flare"

you are probably right! Athough even 50mg didn't cure me of all my pain - only about 80%...... in hindsight I do wonder if the pred itself made me feel so unwell.

I wouldn't call it a flare - rather your inflammation is not yet under control and you are in very early days of this illness. It will take time for it to settle down. Given it worked so effectively it is likely it is PMR, but I can see your Rhuemy's point about needing to rule everything else out - that's how they end up with a PMR diagnosis.

You may actually need 20mg to stay on top of the inflammation for a while, until it settles at least. BUT! your rhuemy wants you to reduce then you are going to be in a whole world of pain with uncontrolled inflammation if it's PMR.

I hated the idea of being on steroids, too, but, after eight years altogether, ( 3 then remission for 3 then another 5 with second bout of PMR, ) I am nowoff Pred., clear of all PMR pain and have been for more than three years so don't be too downhearted; it hasn't, as far as I can tell, done terrible things to my body. It does, however take a time to get back to full strength.

I mentioned LORA/EORA in an earlier post - Late/Early onset. The term LORA is used in the UK, the USA often uses EORA.

@Flip:  And your 50mg start hasn't made much difference further down the line has it really? There is no evidence that you need anything like 50mg to hit PMR hard and the higher the dose - the more side effects it will cause. It isn't necessary in PMR, there is some justification in GCA - but the people who start on these high doses often do suffer from the pred itself. Potantially it can cause some very nasty mental side effects - I know a few who have developed psychosis - so the fewer patients who are exposed to it the better.

The argument has always been that typical PMR will respond well to a moderate dose of pred - that is, less than 20mg whereas other arthritides tend not to or only respond a bit in the short time span they tend to consider. Anything over 20mg is regarded as a high dose - and the higher you go, the more likely that whatever is causing the symptoms - if it is another form of arthritis - will respond.

but that nothing explains, while i am on 20 seemed to manage first 10 days or so tnen gradually from nov 8, seems like symptons building to the way it led up to my first visit to dr, where he started me on 40, had cysto  at hospital yesterday, shoulder started little before bed 11;20 woke 12;30 bathroom but pain, woke before 4 am pain worse, lay down with ice pack up now since 5:30 , still hurting ? like why was it managed for 10 days at 20 now since nov 8 pain worse every am

eileen, im wondering now, if on this 20mg last few days symptons have gotten worse in am on awakening,( last night was up with pain actually, yesterday had cysto but was easy,) if this is actuall RA, pain was managed of course on high dose  40,down to 25, and even on 20 for 10 days or so, but feels like lead up to the first visit to cr 0ct12, where couldnt lift arms, dress,brush hair, buttocks and hams, pained, i remember the lead up, ?

You must keep a record of this and ask your doctor - we could suggest all sorts of reasons but we aren't doctors, just people who've had PMR for some considerable time. Just as we've said you shouldn't try to second guess what is going on, we can't second-guess that either.

It isn't just RA that it could be - there are other forms of inflammatory arthritis that are a bit different. For example, have you got nighttime pain that improves when you get moving and do some light exercise - that might suggest one sort but might suggest another is less likely. Or it could be something else. We honestly can't tell you - only your rheumy can work it out. She has the training and knowledge as well as access to the tests you need so perhaps you could keep a diary with details of pain and times and activities that might have aggravated it to help her. 

Well that really clears things up.  A diagnosis is simultaneously early and/or late.  

You are right, it has made absolutely no difference in the long run - and I accepted what my GP suggested as I knew nothing about PMR the day I found out I had it and was given 50mg of pred. It all seemed fairly simple back then!

As you know, I got terribly depressed, and was very unwell for the first year. Whether it was the disease, coping (or not) with the disease, or the pred I'll never know. All three I suspect. I am better these days. No pain, mentally alert and happy. I've learnt how to reduce stress (just don't get involved!) and come to terms with the 'new me'.

A friend of mine with ulcerative colitis got psychosis - she believed one of her work colleages was stalking her and she was completely off the planet. Her behaviour was outragous! Poor woman. She doesn't take high doses of pred any more!