Back on Prednisolone

[Breconblue]

I ended a tapering year of Pred in January. All good, so good my 2 nd Rheum was unconvinced I ever had PMR and taken off their follow up. Alas within weeks I was worse then I had ever been. I saw a private Rheum End March who said he was unconvinced too, ordered hands, shoulder US scans and also Electrical stimulation tests , as he thought I might have myopathy of some sort. While waiting for them ( NHS) I became almost imobile and rather miserable. I asked GP to put me back on Pred, said I didn't care what the diagnosis was, I just wanted my life again. He reluctantly put me on 15 mg for 3 weeks. Within a week I was a new woman, and had the tests done. However, felt a failure as both testers said the results won't be accurate as you are taking Steroids again.. I said since I had no idea how long I had to wait, I had restarted them. The Electrical Stimulation tester said I should have a muscle biopsy. But honestly, why , if these tests diagnose PMR or other muscle problems, why do we not have them in the first place, rather than relying on positive response to Pred? ( I always have neg blood tests) it makes sense to me to do this before Steroids muddy the waters! Anyone else have these tests ? Plus, though GP said he could manage PMR, no Calcium/ Vit D, omeprazole prescribed no BP check, no more blood tests.. and he's gone away for half term and other GP reluctant to prescribe more Pred!

[PMRpro Ambassador]

They don't diagnose PMR - they rule out other things - and no-one should rely on the response to pred being a confirmation of the diagnosis. It is just another brick in the wall, together with all the other bricks that build up up a clinical diagnosis.

But what a load of numpties. That is totally not a fair way to treat a patient. It sounds too as if you really only need a quite low dose of pred if it took a few weeks to grind to a halt again. Where are you?

[HeronNS in reply to PMRpro]

Bristol area I think, based on an earlier post.

[Breconblue in reply to HeronNS]

Yes, Bristol! I was referred to the local NHS hospital, the Scans and Electrical Stimulation tests have already been done, but no sign of a Rheumatolgy appointment! I got a letter asking me to call for a date, I did within an hour of getting letter, only to be told they only release 40 appointments at a time, and I'm too late! What a stupid system. Said I would go any cancellation, but still waiting. 4 months. But now not in a hurry as pain gone on Prednisolone, would just have liked a definitive diagnosis

[HeronNS in reply to Breconblue]

You know, if blood tests came back clear, no indications anything more sinister gong on, if you respond well to low dose pred and have no symptoms other than the ones which suggest PMR, I don't know why doctors would be so determined to finds something else. Sometimes it really is the simplest solution which is the right one. I know my doctor ran blood tests which should flag if anything needed further investigation. I had no expensive scans or other tests (although did eventually have DXA scan) and after four years, most which have been at very low dose pred, I think any other pre-existing condition would long since have become evident. I'm all for doctors doing due diligence, especially if there is evidence pointing to other concerns, but, if nothing shows up, at a certain point they have to admit, "You've got PMR and you need pred".

[piglette]

I was reading an article yesterday that was saying doctors tend to do lots of tests nowadays whether we really need them or not rather than the good old days when they would diagnose the patient themselves rather than just getting a load of results.

[OutdoorsyGal in reply to piglette]

In the US anyway, doctors overtest to protect themselves from litigious patients.

[piglette in reply to OutdoorsyGal]

I think it is the same in U.K. Apparently costs have gone up astronomically in the last forty years because of legal action.

[Soraya_PMR]

The other GP may be reluctant to prescribe pred, but if you’ve been on 15mg for 3 weeks, he’s going to have to.

[Soraya_PMR in reply to Soraya_PMR]

Unless you can reduce and eek it out? PMRpro’s prob right re only a low dose being needed.

[pugrescue]

A lot of this is such poor care, but no worse than we have here in Canada. You do not need a script for calcium, Vit D and there are many products such as ranitidine to replace omeprazole (less side effects too) also non-prescription. BP units are pretty cheap, about $50 or so,and you can monitor your own. Glucometers are also cheap to track your own blood sugar, they practically give them away so as to sell the est strips. The strips can run a bit, but cheap on ebay etc. I will also add that these home checks are more accurate than at the lab/dr visit, as stress can influence results. Realize you need a dr to get the pred, but if you take in detailed day to day "logs" not too many drs will refuse.....JMO

[Breconblue in reply to pugrescue]

Thanks, Pug, I will get a Glucose metre