Latest flare

[PMRSUE]

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.

[DorsetLady PMRGCAuk volunteer]

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.

[PMRSUE in reply to DorsetLady]

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.

[DorsetLady PMRGCAuk volunteer in reply to PMRSUE]

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!

[PMRSUE in reply to DorsetLady]

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.

[PMRpro Ambassador in reply to PMRSUE]

IMHO, osteopenia is no reason to take bisphosphonates.

[PMRSUE in reply to PMRpro]

I remember my GP frightened me into taking AA by saying "you don't want to end up with wedge fractures of your spine do you?" At that time, I hadn't read up on it so it wasn't an informed decision. I have learned so much from this forum. Thanks once again.

[Celtic PMRGCAuk volunteer]

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?

[PMRSUE in reply to Celtic]

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.

[Celtic PMRGCAuk volunteer in reply to PMRSUE]

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!

[PMRSUE in reply to Celtic]

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!

[PMRpro Ambassador in reply to PMRSUE]

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!

[PMRSUE in reply to PMRpro]

Fish, lean meat and salads???

[Celtic PMRGCAuk volunteer in reply to PMRSUE]

Too right - you’ve done so well to lose that weight, you deserve to indulge in the gorgeous pasta they do in Italy whilst you’re there! Just about to enjoy salmon and olive pasta a la hubby!

[PMRSUE in reply to Celtic]

Yum!

[PMRpro Ambassador]

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.

[PMRSUE in reply to PMRpro]

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.

[PMRpro Ambassador in reply to PMRSUE]

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!

[PMRSUE in reply to PMRpro]

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.

[PMRpro Ambassador in reply to PMRSUE]

Enjoy - we do have another dissuader (is that a word?): we have a campervan. The Amalfi coast is definitely NOT recommended in season!

[PMRSUE in reply to PMRpro]

Too late to back out now even if we wanted to without losing a lot of money. Surely not high season yet?

[PMRpro Ambassador in reply to PMRSUE]

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!

[PMRSUE in reply to PMRpro]

There'll be enough wrinklies on our tour to keep us going. Let's hope the others give up half way.

[Lochy]

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.

[PMRSUE in reply to Lochy]

Thanks Lochy. Glad you had a good break. A friend told me been about the heat at Pompeii, so umbrella already packed in my suitcase. Really looking forward to the trip and hoping my energy reserves last through the week. No late nights that's for sure.

[Hidden]

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

[PMRpro Ambassador in reply to Hidden]

Had you noticed this thread is over 2 years old?

[PMRSUE in reply to PMRpro]

No, I hadn't read that reply. Why so late I wonder? He or she has replied to 'latest flare' not 'major flare' which is my latest post...

Thanks.