See your Dr before a month is up if on high dosage prednisolone

[Gypdyp45]

I haven't contributed to this site for quite some while. Mainly as I have been so ill.

I wish to remind or inform new sufferers of GCA that they should return to their GP within the month with the likelihood of the high dosage being lowered.

I did not, I did not know (never heard of PMR or GCA) and I was on 70mg Prednisolone for over 60 days. This evidently lowered my immune system even more and I developed a mouth infection that was awful, full of white fungie. All I did was doze & dribble for days. This resulted in us returning from a holiday. The main infection was treated with Zovirax but 6 weeks later I am still suffering! My own Dr said it was some form of Shingles and now it has continued into Postherpetic Neuralgia...and again NOT NICE.

Maybe this could have been avoided if I had known to return to my Dr after a month instead of thinking, I should wait till my next app with Rheumatologist!

My other tip is, if you are trying to eat a high Calcium diet, that you can grate hard cheese in your food processor with the metal blade. This can be kept in a container in the fridge and used in many dishes. Much less fuss than hand grating and cheaper than ready purchased.

[PMRpro Ambassador]

If you have GCA you should be under the care of rheumatologist and THEY should have set an early follow-up appointment if they felt you need to be on 70mg - it is a very high dose even for GCA. Plus they should have said immediately what point a reduction would be due - and what to do if the reduction resulted in a return of symptoms.

I do know a lot of doctors would tell a patient not to be too far away from home in the first few months of GCA. There is too much that could go wrong. And favoured holiday destinations are not renowned for the availability of specialist medical care! Though I could recommend here where I live - wonderful holiday destination and a very good hospital and rheumatology department - but even it doesn't cover everything.

[Lochy in reply to PMRpro]

Where do you live PMRpro? Mind you best not to reveal as we may all move if its a nice holiday destination with added benefit of good rheumatologists! Could always plan my holidays around that area, just in case!

[PMRpro Ambassador in reply to Lochy]

At the foot of the ski mountain called Kronplatz or Plan de Corones in northern Italy.

I can't really speak for the quality of the rheumies in the case of PMR - the last one I saw was determined she would get me onto alendronic acid which had nothing at all to do with why I was seeing her (I needed physio appointments) and the guy I'd seen before was terribly NICE but far more enthusiastic about practising his VERY good English than PMR/GCA. The Head of Medicine is a PMR/GCA buff as a hobby and seeing him combines 2 things - covers atrial fibrillation too. My own GP is rheumy-trained. What more do I want?

[DorsetLady PMRGCAuk volunteer]

Hi Gypdyp45,

Thought In a previous post you said you were given a reduction plan by Rheumy. Why wasn't that followed?

I know you've been away, so may not have physically been able to see GP, but if you were in doubt about your dose you could have phoned the surgery maybe.

Hope you soon feel better, and get onto a sensible reduction regime.

[Gypdyp45 in reply to DorsetLady]

Thankyou for your reply. I was put on 70mg on 16 march after suspected diagnosis in out of hours GPS in nearest Hosp. The Dr there recognised it and said. ,you will get through this!, I keep those words dear! Saw my own gp next day and bumped dosage to 60mg but on seeing the rheumatologist a day later, she felt 70mg. My next app with rheumy was 15 may and I assumed wrongly that I should keep on this dose till then! I did not know to return to my gp and somehow the surgery must have mislaid any message! So that's how I got left on 70mg for 60 days.

I am now down to 30mg. With the help of my gp we are still lowering the dose 2 weekly. I am just so tired and fed up with my shingle mouth. I am also short of breath but have had ECG and chest check up. I am just a whinger! But my gp is looking after me. I have had so many blood tests its a wander there is any left! I am now on a anti biotic, so let's hope things get easier.

[DorsetLady PMRGCAuk volunteer in reply to Gypdyp45]

Hi again,

Yes you will get through - I did, and many others - so hang on in there.

Really the Rheumy should have given you a reducing plan to follow - don't know what's the matter with some of these people! Or maybe she assumed your GP had, but it's her specialism! It's not good enough, I don't think. But, it's done, and hopefully now you can get into a sensible regime.

However, if it was me, and maybe when you feel stronger you should let it be known that between the two, the system didn't work as it should. You don't need to make a big deal, but if things like this aren't highlighted everybody assumes it's hunky dory.

Hopefully you'll feel less like a pincushion in time! Take care.

[Gypdyp45 in reply to DorsetLady]

Thank you. I think the surgery is more aware as it also happened to my neighbour! But yes, I must go forward.

[SheffieldJane]

You poor thing! That all sounds horrible. Sorry your holiday was cut short too. Your post was a good reminder that we have to be really proactive and informed with this disease, especially with some doctors.

You've had all the practical, medical advice so it just remains to say get well soon.