Should I contact rheumatologist?: Can't get my head... - PMRGCAuk

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Should I contact rheumatologist?

ChinaWuntoo
ChinaWuntoo

Can't get my head round this.

15mg for 2 weeks, 12.5 for 4 weeks and, to date, 20 weeks on 10mg.

Extreme fatigue, lethargy and dizziness. I don't know whether to blame PMR, Pred or Allandronic acid. Or perhaps my age, although I wasn't like this when I passed 80 a year ago before being diagnosed.

Next rheumy appointment is in 5 weeks. I am having all the blood tests regularly but have never had a DEXA scan.

Advice, please. Would it be a good idea to contact the rheumy secretary and ask for a telephone consultation now? Should I ask for a DEXA scan? Should I suggest tapering now (using a very, very slow taper for which I will certainly argue - paper already written).

I'd value any advice.

29 Replies
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PMRpro
PMRproAmbassador

Sounds as if your rheumy may be sort of following the Quick and Kirwan paper - a year at 10mg which they find reduces flares from 3 in 5 to 1 in 5. Which is a notable achievement.

rcpe.ac.uk/sites/default/fi...

I'd suspect that the excessive fatigue is the underlying autoimmune disorder - and I'm afraid a year is a long time for all sorts of reasons including age, PMR and the added extra of Covid-19.

You can try getting an earlier appointment but I suspect that is the realm of hen's teeth! Don't try to rush - you are at a fairly low dose all things considered and the last thing you want is a flare. And the next stage of reduction is likely to add in the fatigue of waiting for adrenal function to get back to normal - out of the frying pan and all that ...

ChinaWuntoo
ChinaWuntoo in reply to PMRpro

Thanks a lot.

Ah, your last sentence is what I wanted to hear (or not, if you see what I mean). I had wondered about the Quick & Kirwan strategy - it is one of the articles I had printed off - but in April the rheumy said that he hopes to start reducing in mid-August which regimen I have not found anywhere. I don't have an appointment until early September. So, my confusion.

I'm quite happy to take as long as it takes but it would be good to feel able to do more. As you have told me before - patience. It might be better to follow his original appointment date, rather than being thought to be stroppy.

Thanks again.

PMRpro
PMRproAmbassador in reply to ChinaWuntoo

The regimens are only outlines - or should be. No reduction can be written in stone - every patient is different in every way so you are lucky to have a sensible sounding rheumy who isn't rushing you into or out of anything. A few mg extra and no flares is a great compensation - rushing may lead to a flare, a return to higher doses and increased difficulty in reducing later.

ChinaWuntoo
ChinaWuntoo in reply to PMRpro

Thank you.

Personally I would not take Alendronic Acid unless I knew I needed it, which means a Dexa scan. Good luck getting one at the moment though, you may be lucky depending where you live. Again personally I would not reduce more than half a mg under10mg every four weeks, although some people seem to get away with 1mg.

The fatigue is awful, but it is all part of the illness.

ChinaWuntoo
ChinaWuntoo in reply to piglette

I hope to reduce by 1mg in 7 weeks. Am rethinking that in light of continuing fatigue and dizziness.

piglette
piglette in reply to ChinaWuntoo

Is that from 10mg to 9mg? Good luck, that should be OK, as you reduce it is worth choosing smaller steps I found, I am a tender little flower as far as reducing is concerned.

ChinaWuntoo
ChinaWuntoo in reply to piglette

Yes, following DorsetLady's plan. But rheumy doesn't know what I want yet!

piglette
piglette in reply to ChinaWuntoo

I have got through several rheumies. I am amazed how little they know about PMR. A lot of them seem hell bent on getting us to reduce as quickly as possible. You may have one of the good ones of course, although they are few and far between.

ChinaWuntoo
ChinaWuntoo in reply to piglette

Are your changes due to rheumies moving on or did you ask to change? If the latter, any tips on how to do it? Through my GP?

This is if I come to the conclusion that my rheumy is no good (and there are signs).

Thanks.

piglette
piglette in reply to ChinaWuntoo

I did it by just saying I wanted a different one. The first one was private and I was a cash cow. The next was NHS.

ChinaWuntoo
ChinaWuntoo in reply to piglette

Thanks. It is a bit of a pipe dream for me that I might get to see Dr Dasgupta who is within driving distance but obviously not in the forseeable future. Private is not a possibility for me, really.

Watch this space.

With hindsight I might have asked whether my rheumy has experience of PMR before accepting him - but!

PMRpro
PMRproAmbassador in reply to ChinaWuntoo

He'd probably have said yes even if he hadn't! Some people have no shame ;)

PMR2011
PMR2011 in reply to ChinaWuntoo

Are you having Amy other symptoms? I had similar issues along with the occasional racing heart when I was at 20mg. Turns out I was hyperthyroid. Don’t discount something else besides the PMR going on. Can you get an apt with primary doc?

ChinaWuntoo
ChinaWuntoo in reply to PMR2011

Thanks PMRpro, I daresay I could get a GP appointment by 'phone but I'm not keen as I need to see his lips to understand what he is saying!

Here are my details.

I'm waiting to get my latest blood test results (requested 5 days ago - results should have been available then).

BP is controlled at average 122/71

Weight is ok

Blood sugar was ok a month ago as were the other usual monthly tests, I was told.

Pain - none of the excruciating PMR pains

Stiffness - don't really know what the difference between this and pain but I don't get it.

Fatigue, lethargy and dizziness are severe. 30 minutes activity is about the max (I am now taking note of your link to pacing, thanks)

Some signs of GCA symptoms (temple ache, jaw ache, tender scalp - not severe and watching it all very carefully.

Sleep not bad but don't feel refreshed. Wake to headache.

Nothing else.

So my conclusion is that steroids are dealing with me fine and I'm not in a flare.

Medication is Pred., Vit D, Allendronic plus BP stuff.

I do have spondilitus which may account for some of the dizziness.

PMRpro
PMRproAmbassador in reply to ChinaWuntoo

Sounds a fair assessment I think EXCEPT for the signs of GCA and I include the fatigue in that. That does need an eye keeping on it.

ChinaWuntoo
ChinaWuntoo in reply to PMRpro

Thanks. I check my sight for blurring and double vision morning and night from my pillow to my bookcase!

All I know is that I don't get fatigue very often, and I put this down to one of several reasons or a bit of both, who knows. One is being on enough Pred, which for me is the steroid injections and every now and then if I flare up, some extra Pred. So maybe even 10 isn't enough for you right now? Secondly I do a very low carb diet and also take Vit D supplements. Thirdly I don't take AA as there is no need to in my case, no family history, had 2 DEXA scans and all fine and no osteoporosis even after being on steroids most of the last 8 years. Perhaps calcium tablets would be enough? Also I make a big effort to make sure I'm well hydrated and drink plenty of water as that can make a difference to energy levels too.

"Bit of both, who knows" sums it up, doesn't it?!

I had thought about whether 10mg is not enough but have no idea - perhaps the rheumy will know!!?? But I've been on it for 20 weeks with no pain so have assumed it is right.

I'm on Vit D but not Calcium - rheumy took me off that. I plan to ask him directly when we 'meet'. I do drink a lot, including a daily glass of milk.

I do have a sister with PMR and osteopororis and my mother had osteoporosis, too. No signs that I have it so far as I can tell.

PMRpro
PMRproAmbassador in reply to ChinaWuntoo

"But I've been on it for 20 weeks with no pain so have assumed it is right"

That is a fair assessment - all the pred does is manage the inflammation and the symptoms it causes which are mostly swelling causing pain and stiffness. But all a/i disorders are accompanied by fatigue to some extent and it can vary. No-one has found a way of managing that with a pill - sometimes there are no answers.

healthunlocked.com/pmrgcauk......

tangocharlie
tangocharlie in reply to PMRpro

And I'm pretty much sure that's the first time I've heard ANYBODY say they've been at 10 for 20 weeks and in no pain which kind of gives me faith the Quick and Kirwan method is better than standard methods that would have had you down to 5 in that timeframe (20 weeks reducing by 1 every 4 weeks) when I doubt you'd have been saying that!

Perhaps I've misjudged my rheumy? How I wish I could have a face-to-face so that I could read him and he me.

ChinaWuntoo
ChinaWuntoo in reply to PMRpro

Thanks PMRpro that is comforting.

I've printed the links off and will read this evening.

Just another thought, have you had things like thyroid and blood sugar levels checked - my GP did both of those when I complained I was fatigued

I've had 21 tests on two occasions and think thyroid was one of them. Certainly I am checked for blood sugar. I plan to stress fatigue when I speak with rheumy.

I never really thought I had a problem with the Alendronic Acid but my PB keeps dropping .

Doctor took me off Furosemide last week and has arranged for a Radioisotope Scan Aug 13th

Haven't had a dizzy spell since coming off that pill.

I am 75 and have an afternoon nap, but don't suffer from what I'd call fatigue.

I'd go back to your doctor.

I am asking PMRpro and other experts on this disease. Am I wrong in being satisfied with not being "normal?" I have stiff legs, especially in the morning, and occasional leg discomfit. I don't walk as I used to walk, fast and strong. I am fatigued in the afternoon. I am down to 3mg after 20 months. I did have a stumble in the garden about 6 weeks ago which led to tendinitis in my left quad. Because of the possible side effects to my eyes and heart, I have tried to get to the lowest prednisone maintenance level, accepting the discomfits, trying to be satisfied with my level of activity. I have been at 3mg for several months. My GP lets me taper at my own pace, I see him every 6 months on regular basis. I have not been to a specialist.. I also have osteoarhritis. I think some of my problems are due to an aging body, that simply cannot or should not even try to do the things I did in the past. As it is I do my own housework and gardening, but no more running and pickleball playing.

PMRpro
PMRproAmbassador in reply to Noosat

The fundamental question is whether you were better on a bit higher dose. Being on too low a dose potentially leaves unmanaged inflammation in the body - and it isn't good for it either. That stumble may well have given rise to a small flare - you say tendinitis developed, that can also be a part of PMR. Yes age does have a lot to do with it - but even so there must be an optimal solution.

Noosat
Noosat in reply to PMRpro

Thanks for your reply. I have thought of upping dosage slightly to 5mg, and see what happens.

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