Hi everyone, just wanted some thoughts and/or advice on my GP's instructions. Three years with PMR and lowest pred dose has been 5 mgs. Was on 7 for a couple of months to tide me over a holiday, then Rheumatologist upped dose to 10 as ESR had increased. Two weeks ago, saw GP as feeling unwell, new pains in wrists, ankles and shoulders, appetite poor. Said it was a flare, put me on 25 mgs for a week, 20 for a week, (current dose) 15 for a week, then back to 10 until I see Rheumy end of Jube. No blood tests. Feeling spaced out and exhausted. Has anyone been put on this plan for a flare. I feel so awful, decided not to follow GP's orders next time. Two steps forward and umpteen back, seems like I'm back to square one again and getting nowhere slowly, if not at all. Moan over.
Latest flare: Hi everyone, just wanted some... - PMRGCAuk
Latest flare
Hi PMRSUE,
Think your GP has gone a little overboard, but probably with the best of intentions - to get your PMR back under control. However an increase to 15mg might have achieved it!
It’s the extra Pred that is making you spaced out, hopefully that feeling should reduce as you taper, and as you are part way through really the only thing to do is to continue.
You don’t mention your pains, so presumably they are now controlled which is what was required, but a slightly brutal way to do it!
Surprised she didn’t suggest another blood test, it’s a bit of a knee jerk reaction to one raised reading, but I guess you’ll get another one before next Rheumy appointment anyway.
I would also discuss with Rheumy what you should do in future should this happen again.
Hope you begin to feel a bit more “normal” soon.
Thank you Dorset Lady, good advice, as always. Yes, extra pains have gone so hopefully increase must have dampened the inflammation for a while. Going to Italy next Friday so hoping head will have cleared when down to 15 mgs on Tuesday. Rheumy wants me to see a clinical nurse specialist to discuss meds and I know they want me back on AA which I took a break from a few months ago after 4 years. Still undecided but have learnt a lot from this forum. Thanks once again.
Hi again,
I would question going back on AA, I was on it for 4 years, with no problem, but decided that was long enough. No longer than 5 years is recommended, and I thought I read somewhere that it stays in your body for a lot longer, so a bit more investigation might be sensible.
But, in the meantime, enjoy your holiday!
Yes, I agree. Rheumy said I am osteopaenic and if I wasn't on steroids would recommend calcium rich, diet, exercise and Adcal which have been doing for 4 years. Still deciding what to do.
IMHO, osteopenia is no reason to take bisphosphonates.
PMRSUE, apart from increasing the dose, it might have been more helpful if the GP had taken your bloods to check for inflammation. It seem a very high dose increase. Of course, you will be feeling "spaced out". The highest I was increased to upon a flare was 10mg though I see that, unfortunately, that hasn't worked for you. Has your GP carried out a test for rheumatoid arthritis - just a thought, as some PMR patients do occasionally get diagnosed with LORA - late onset rheumatoid arthritis. I suppose the question is, has the increased dose helped to ease the pain at all?
Yes, have been tested for RA as it runs down three generations of my family on the female side, but results were negative. Thank goodness. Pains settled now but spaced out and forgetful on this high dose? Escorted holiday in Italy next week will hopefully help, sunshine, Pompeii and pasta here I come. Thanks for your reply.
So good to hear RA has been ruled out - PMR is more than enough to cope with. Enjoy Italy - as for pasta, that is my favourite food!
I love pasta too but haven't had any since Christmas as told by GP that I'm pre-diabetic so low carb diet and now 1.5 stone lighter. However I won't be holding back next week in the world's pasta paradise. Bring on the Vongole!
See - I find it very easy to avoid pizza and pasta in Italy! Easiest place in the world to eat low carb and still have fab food!
A lot of experts would have said add 5mg to the dose where the flare started - that is very often enough. If it isn't you know this is a real flare in activity of the disease and you might need a bit more. I really do feel 25mg was a bit of a sledgehammer to crack a walnut.
Where in Italy are you off to? Seems a popular place at present 
Just seen - Pompeii. Anywhere else? But a little warning - Pompeii is pretty hard work and even more so with PMR and a flare.
We are going on an 8 day tour of the Amalfi coast. The reviews and your comment all seem to mention how vast Pompeii and Herculaneum are so will pace ourselves and just do what's right for us. (My friend has heart trouble). A few mosaics and a couple of relics (us!) will suffice. Thanks again.
LOTS of steps/hills on the Amalfi coast which has rather put us off. My friend loves it and they're back there at the moment I suspect!
We originally booked the trip 7 years ago when both younger and fitter. It's one of the places on our hit list so will do and see what we can.
Enjoy - we do have another dissuader (is that a word?): we have a campervan. The Amalfi coast is definitely NOT recommended in season!
Too late to back out now even if we wanted to without losing a lot of money. Surely not high season yet?
Not yet I would hope - this will be the first week of the season I'd think so still fairly quiet. However. this week is the week before the Whitsun holidays in southern Germany when schools are off for 2 weeks - -and yesterday was a German public holiday. That's when they start to stream southwards - it's all the wrinklies from northern Europe. But the Amalfi is a bit far south!
I’m just home from a few days in Naples. Visited Herculaneum and loved it. We were on a DIY holiday so did everything at my pace. Decided against Pompeii as felt too big to walk around. Was pretty hot and busy. Loads of school parties. You’ll have a wonderful trip just don’t overdo it! Easier said than done.
Took me 12 years to get off. Then in the last 18mths was slow 3 and 2 alternate then 2 and 1 carn't rush over a couple of weeks or flares up. Been off a few months now and been ok. But then last few days had lots of pain in arms hip leg and very hot especialy at night so thinking it might be back. Going to doctors tomorrow. The steroids work fine but not good for years . Just a case of them or pain. Plus if your immune system is attacking you that carn't be good so will take them again if need be
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