Could this be just a blip?

I'm not holding my breath about the UK managing to see it as a quid pro quo! My husband is fine, he has his Italian healthcare card with his very small Italian pension. I have an EHIC because I am now of UK pension age - and hopefully on my 67th birthday, Italian pension age, I will get an even tinier pension and all being well, that precious Italian healthcare card. But from March to August 2019 - who knows. Ah well. 

If you are like me on a silly taper when I first was "allowed" pred - within 6 hours of missing the first 5mg tablet I was in as much pain as I had been pre-pred. 

Further to my query 'Is this just a blip', I finished the last 10mg of pred on Sunday (it's Wednesday today). The German GP had prescribed 5 days of 60mg; 5 days of 40mg; 5 days of 20mg; 5 days of 10mg. It's been mentioned that this is an unorthodox approach but I guess he took into account his holiday and the fact that I would not be here on a permanent basis.

Well, I guess my problem was not a blip because I can already feel bad things starting to happen: heavy limbs, pains in shoulders and calves. However, the pain is minimal compared with how I felt before the prednisone treatment above.

On the face of it, I do have PMR, but will a diagnosis/blood test be required before I am started on a long-term tapering plan? Can a blood-test be carried out so soon after the completion of the cortisone course? If things don't get any worse, I can hang on till we return to France in a couple of weeks. I'd get a blood-test result quickly there. Clinical laboratories in F are partially privatised and each town has several 'laboratoires d'analyses médicales' in office or shop premises. The results often come back the same day. Their equivalent of the NHS pays 65% and the individual pays the balance. Most French people (and a lot of foreign residents, too) have an insurance ('mutuelle' to cover the difference but with an EHIC you pay the 35% off your own bat.

Many thanks in advance for comments and advice.

ATGB

Now why am I not surprised...

It wasn't an "unorthodox" approach - if this is PMR it isn't even an approach. In a way it's a shame I didn't suggest not using the pred the way he said but taking 15mg which would possibly have made it last until you got back. But you are where you are. It all depends on how active it is - you have definitely cleared out all the accumulated inflammation and it has taken only 3 days to resurface. That doesn't bode particularly well I fear. Is a consult with that German doctor a possibility? He might give you some more to keep you going - the UK rheumy I saw gave me 6 weeks of pred 15/10/5 for 2 weeks each to tide me over a trip to the US. That was how I discovered the miracle response of my symptoms to pred that was enough to convince a different GP this was PMR. But if he, or anyone else does that, start with 15mg - it should be enough for most people.

Thanks Eileen for your reply and comments.

I've made an appointment with the German GP for tomorrow afternoon (I was offered a choice of am/pm). Of course, I'll have to be careful ... there's nothing more likely to put a doctor's back up than to tell him/her what's wrong and what kind of treatment one needs. There won't be time for a blood test here but I'm still unclear about how this will work. Will I have to come off the preds for some days before the blood test? Will I have to bite the bullet and suffer the aches and pains until the residue of cortisone has cleared my system? If that's the case, then so be it ... but it's not something that I'd look forward to.

Thank you again.

ATGB

 

About 20% of patients with PMR and GCA never have raised blood markers - but they still have what is almost certainly PMR/GCA. The German guy possibly thought this was a flare of an inflammatory arthritis, in which case the short course of pred he gave you should have made a difference - slowly at first and the symptoms would have stayed away for longer after stopping the pred.. PMR is typical in the symptoms improving dramatically when starting pred and returning is a similar time frame on stopping it. Hopefully this guy knows that and is willing to take it as a positive point if not confirmation of the diagnosis. Don't gloss over how you feel nor how long it took for the symptoms to return - and with a bit of luck he will cough up with at least enough pred to get you home in reasonable comfort. But you don't need 60mg again, 15-20mg SHOULD be enough, At most 25mg/day.

Next day appointment eh- you would dream of that in the UK as far as I can see!

An update on what I'd first hoped was a blip, but which is not.

I saw the German GP again and he advised a return to 20mg per day and seeing a rheumatologist ASAP. So I've been on 20mg per day from 18 Aug to today (31 Aug). I'm fine and wonder whether to reduce to 15mg. During my first course of preds, I was fine even when dropping to 10mg. The problems returned when I stopped completely.

When I got back to France on 28 Aug, I saw a GP the same day and he referred me to a rheumatologist for 5 Oct. The GP prescribed additional 20mg tabs with a list of things to be checked in a blood test. I can have the latter done at any time - clinical labs are privatised and I just need to walk in. However, perhaps a sedimentation test takes a while to evaluate. I obviously need the results before my appointment on 5 October. I'll call at the lab and get chapter and verse but does anyone know the likely time needed for an evaluation of a sedimentation test? Perhaps the blood test should be delayed to as close as possible to 5 October ... (?)

I reckon that I could now drop from 20mg to 15mg - but is this advisable or should I continue the 20mg until my rheumatologist appointment on 5 October?

Many thanks in advance for comments.

ATGB

A sed rate test MUST be set up within 4 hours of taking the blood for accurate results - and the test itself takes a maximum of 2 hours. They measure the distance the top of the red cells has settled in 1 and 2 hours - not that anyone ever takes any notice of the second hour for basic purposes.

If you are on 20mg pred and have no symptoms the chances of your sed rate being high are greatly reduced - that is what the pred does, reduces the inflammation which stops the symptoms it causes.  

I would try 15mg - since you were OK the first time round. If that IS OK , that's fine. If it isn't you can go back. I would try that rather than simply staying on 20mg for another 5 weeks. From 15mg I would reduce far more slowly than the first time round. 60mg would calm most things down - PMR is characteristic in responding to a moderate dose of pred so that is a factor for your rheumy to see if you are able to reduce from 15mg by then. 

I do wish GPs would look up guidelines for suspected PMR - NOWHERE does it suggest such high doses for PMR and the poor patients are subjected to amounts of pred that are totally unnecessary. Start low - you can always increase the dose if it doesn't work. 15 or 20 mg is more than enough for the first dose. Of course - a fundamental problem is that almost all the stuff is in either English or sometimes Spanish. 

Thanks for the advice.

I reduced to 15mg four days ago and so far so good.

This morning I went to the lab to ask how long the test would take to evaluate and they said two days. 

However, with my rheumatologist appointment booked for 5 October and because I'm going away, I think I'd better play safe and have the test on 21 September. I don't suppose it will matter that the evaluation will have taken place two weeks before the visit to the specialist ... (?)

On another tack, it's a fiddle cutting a 20mg Pred so as to get a 5mg piece. If/when I get down to a daily dose of 5mg and perhaps down 2mg, are there smaller tabs on the market in the UK, which is where I'll probably be by that time?

Thanks in advance.

ATGB

You can get smaller than 20mg in France - a lady who does the admin for the NE forum lives in France and I know she has never had a problem with getting small size doses for tapering.

Ooops - misread your other bit - in the UK pred comes in 5 and 1mg tablets in the plain variety and 5, 2.5 and 1mg in the gastro-resistant form. I don't think I have ever come across 20mg in the UK, even for people on the very high starting doses for GCA.