PMR - 2 years on and Flare?

[Gimme]

Coming up to my 2 year anniversary on prednisolone and I seem worse than ever. On 6 mg daily atm.

A lot has gone on in the last few months, a 3 week trip to Mexico in November and woke up on the day of the flight out, barely able to move, having had a few good months until then. Bunged my dose up to 10 mg, which helped and stayed on that until I came home. Unable to walk when I got to Cancun, but better on 10 mg. Had a fall on a slippery path when I was out there and jarred my body so that I hurt all over for several days. Then 3 days before my return, the pain shifted from my legs to my arms and that is the main problem atm.

On top of that, I have had one cold after another since December, have a few days to recover and then I am ill again, feverish and it goes to my chest, and sleeping a lot of the time. I've suspected all along that a virus causes me to flare. Was given a CPAP machine for sleep apnoea in December, which I am finding hard with PMR. Had dental treatment 2 weeks ago and can't tolerate hot or cold due to my teeth suddenly very sensitive. I don't suspect GCA, my teeth often respond like this to dental treatment. In the background, frequent appointments to monitor fast growing ovarian cysts and endometrial thickening, blood results for cancer protein OK so far, but scary stuff.

I don't know what to think atm. I'm not good at spotting flares, due to my issues around feeling like I am making a fuss over nothing and other people are worse off than me, so it is really hard for me to judge. Hence, needing an outside opinion. The arms are a real problem. Having trouble getting dressed, can't reach to the side or behind me and lifting anything heavier than a coffee cup is painful. Assume it is the PMR as it is dose responsive. Have been lucky until now with no arm involvement, but swimming is out of the question. It was my main joy in life whilst suffering with this miserable illness. That's the other thing, I feel absolutely miserable and done in. I'm not depressed, just tired of PMR and not being well, and feeling worse than ever.

I probably need to bunk up my pred dose, but not sure to what. 10 mg dulls it, but doesn't go away. I'm not sure that I could tolerate more than that, since pred makes me go a bit psycho. Plus, not 100% convinced all this is PMR. 10 mg gives me about the same level of relief as 5 mg did at the beginning of last year. After 6 weeks on 6 mg, the inflammation doesn't seem to be building up again (yet?).

On Saturday, I am heading up to Northumberland for a week. No idea how I am going to manage the journey now and what I will be capable of when I get there. I've decided to pack a very big coat and sit on a bench and watch the sea if I can't manage anything else. At least I will be able to see the sea (just) from the window.

Doc's appointment booked with my favourite GP for the Monday when I get back.

I did try to make it short, but it helps to dump it in writing. It makes me think that maybe I am just dealing with a lot and things will calm down.

[PMRpro Ambassador]

I think you ARE dealing with a lot - and I think a lot is there that has contributed to the situation you now find yourself in. And when it affects you - it isn't minor and it is irrelevant what any of the rest of us are dealing with so you are just as worthy as anyone else.

I suspect that you are trying to do far too much for the pred dose you are on - I do appreciate why you don't want to do what we would suggest to anyone else. i.e. add 5mg for a week or two.

ARE these "only" viral infections? Or is your bashed-about immune system just about dealing with a minor infection but not quite and back it comes a short time later - you can have secondary bacterial infections you know. And endometriosis can cause all sorts of systemic problems even though a lot of doctors are years behind on its effects. I watched a very good article on German TV last night ...

sciencedirect.com/science/a...

All this together could account for 10mg not being as effective as 5mg last year. Are "steroid-sparers" not an option? Could your rheumy not apply for special approval of tocilizumab since you have such problems with pred?

[Gimme in reply to PMRpro]

Thank you Pro. Appreciate your support.

That's more or less along the lines of what I was coming to, I think. It's typical me, always expect far too much of myself.

Yours and DL's comments have convinced me that I would be better on 10mg until I get back. I tolerate the pred better than I did when I first went on it, so I think I will be OK. Two years ago, I was still in a permanent state of fight or flight from my burnout when I left work and I am back to my old self now, apart from the PMR. Though I don't think I dare risk more than 10 mg without the GP being aware beforehand just in case I go bonkers again.

Also, I think I will be able to manage the trip up north on 10 mg. I am reluctant to cancel because I know that being outdoors and up there near the coast for a week will make me feel so much better, even though it is middle of winter. My friends always say that it is like my whole personality changes after I have been up there. So on balance, it is best to do whatever is necessary to get by. I don't think the GP will quibble. It's not the grumpy rheumatologist.

I'm wondering about the infection (viruses? whatever) and whether I have a recurring chest infection not properly gone away. I think the first time was a definitely a cold as I had the upper respiratory symptoms. I do have some amoxicillin that the respiratory nurse gave me a couple of months back for emergencies, so I could start that. Though the feverish feeling without raised temperature has often been an effect of the PMR in the past.

hmmm, hadn't really linked the gynae stuff with the endometriosis, though maybe I should have done. That's a good point. It did cause a lot of inflammation in my body when I was a younger woman. I'll remind the GP of that when I see him. I guess the inflammation from all these other things might be additive. Thank you for the link, I'll take a look. Hope it's not in German.

At the moment, I don't have a rheumy since I sacked the grumpy rheumatologist. I would say that the GP is much more up to date and in accord with what I have learned here. Plus, he is really kind and that counts for a lot when you feel crap. He was muttering about rheumatology last time I saw him, so if he mentions it again, I thought that I would ask if he would send me to Vanessa Quick's team, just down the road. No-one has ever mentioned DMARDs to me so far. My gut reaction has been, not on your nelly, until now. Both metaphorically and literally, bearing in mind my digestive issues. Let's see what the GP says when I get back.

Anyway, thank you for giving me food for thought. A lot of things adding up to my feeling of malaise. I'm feeling a bit more cheerful than I did when I first posted.

[PMRpro Ambassador in reply to Gimme]

No - don't expect anyone else to do German! It is a link to the abstract of a paper that comments on the concept rather than the programme.

Things change - and trying to get referred to Prof Quick would be a good move in view of the pred problem.

[Gimme in reply to PMRpro]

I usually pick up languages fairly easily, but German is one that has confounded any of my attempts at acquiring the rudiments, so far.

[PMRpro Ambassador in reply to Gimme]

Lots of English speakers prefer French or Spanish but Scots often do better with German.

[Gimme in reply to PMRpro]

And yet, Scots have such good spanish accents. There are a lot of sounds in German that never appear in a south east home counties accent, so it is hard to make yourself understood. Though most Germans seem to find it quite hilarious if you turn up with a phrase book and give it a go and most are delighted to join in with your adventures. Incidentally, totally off topic lol, I've been watching BBC Alba a lot lately, brilliant interesting programmes and glorious scenery, so I tried my hand at the lessons on gallic and I came to the conclusion that it would be very hard to speak if you haven't grown up with it, but even after a few subtitled programmes, I am already picking up words that I recognise. I just can't get a hook on German, at all, when I hear it.

[PMRpro Ambassador in reply to Gimme]

You want to hear the local version os German here - and the rato-romanish language. Ladin, which can sound like a cross between German and Italian with scribble thrown in.

[Gimme in reply to PMRpro]

lol or maybe I don't.

[Gala123 in reply to PMRpro]

Just been to a meeting where a rheumatology consultant confirmed that tocilizumab is only approved in the UK for GCA but not PMR, unfortunately.

[PMRpro Ambassador in reply to Gala123]

It is - TCZ isn't approved for PMR anywhere officially but it is sometimes possible to submit an application for drugs to be used for other things if there are good grounds. It is often worth the try.

[Gala123 in reply to PMRpro]

Thank you for clarifying this. I would be interested to know if anyone here has received Toci. I was told that I might be a candidate down the line but I have a borderline LVV.

[PMRpro Ambassador in reply to Gala123]

I'm on it for long-standing, resistant PMR and it enabled me to get from 19mg to 7mg pred. But I am not in the UK, I live in Italy. I also can't get below 7mg without first bicep tendinitis reappearing that makes using my hands next to impossible. and then adrenal insufficiency symptoms start to appear as well - which isn't surprising after 16 years on pred. I live alone with no family within 1000 miles so it is useful to be able to do things.

[Sophiestree in reply to Gala123]

I have diagnosed LVV and had TCZ for 18 months.

[Rugger in reply to Gala123]

Like Sophiestree, I have LVV and had my NHS ration of TCZ. It is prescribable for Rheumatoid Arthritis, which I see mentioned in your profile and it is not limited to 52 weeks for RA, as it is for GCA & LVV. You would need to discuss it with your Rheumatologist. Good luck!

[DorsetLady PMRGCAuk volunteer]

Ditto to PMRpro's comments... and I'd be inclined to take 10mg until you get back and see GP...

[Gimme in reply to DorsetLady]

Thank you, DL. I agree. It'll do me good to get away, so I need to do whatever will make that possible. 10 mg, it is! I've also been having a think about what I need to do to make the preparation and the journey easier on myself.

[DorsetLady PMRGCAuk volunteer in reply to Gimme]

Good plan… enjoy and build in plenty of breaks on the journey… 😊

[Gimme in reply to DorsetLady]

It's not unknown for me to take a nap in a service area, round about Doncaster.

[DorsetLady PMRGCAuk volunteer in reply to Gimme]

Wow!! Sunny Donny!

[Gimme in reply to DorsetLady]

ha ha well, somewhere between Doncaster and Leeds is my half way mark. A snooze for 20 minutes and a cup of tea does wonders.

[PMRpro Ambassador in reply to Gimme]

My recipe in the camper!

[Gimme in reply to PMRpro]

You're determined to get me into a camper van, aren't you? Funnily enough, I know someone who is having one converted, but the way that his health is going, it may never be used, so I am standing by to see if I can acquire it an acceptable price.

[Hunter134]

Hello.Just what to say I fell twice in one month and each time it took a long time for the pulled muscles and my ribs to heal.At least 6-8 weeks.I did up my Prednisone from 7 to 12 mg that helped me.Seems you have a lot going on and it's pmr telling you to slow down.I do hope you feel better soon.

[Gimme in reply to Hunter134]

I did pull a couple of muscles in my legs, but it was the jarring when I landed that did me. My whole back and my arms and neck were affected. I stepped onto wet limestone without noticing and I was like bambi on ice, until my legs flew from under me and I landed on my bottom. Then it took me about 10 minutes to work out how to get back up as my arms hurt too much. It must have been comical if anyone had been watching. The worst bit was that I had my binoculars round me neck and they whacked me in the eye as I fell. So I was sporting a rathe magnificent black eye for the rest of the holiday.

I'm not sure about slowing down though. If I went any slower atm, I would be going backwards. All my energy over the last few months has been going on hospital, doctor and dentist appointments.

[random901]

Hi Gimme! I really get the done in but not depressed feeling as I too seem to be going backwards, stuck on 11 mg pred (which I also loathe) as have painful lumbar compression fracture. A change of scene would be marvellous for us both. Camper van currently in garage. Going to sell it 😔 but hoping to replace it with modified version end of summer - I need to think optimistically! Do enjoy Northumberland - it is a beautiful and peaceful place.

[Gimme in reply to random901]

Thank you, Random. I love it up there too.

[Gimme in reply to random901]

And I have been thinking about this camper van malarkey on and off for a while. I think I should give it some more thought when I get back.

[random901 in reply to Gimme]

End of summer best time for purchase, when the disenchanted have fallen out of love with the experience. Inner configuration really important, especially putting bed up!

I wish ...

[Gimme]

Update today (weds). I took 10 mg of pred yesterday and my legs were back to full spriteliness when I went downstairs to get a coffee this morning. The arms and neck might take a bit longer, they are still sore, but there is some improvement.

[Creas]

Have you tried having a steriod injection in your shoulder? My pains all disappeared immediately when I did that. I'd been in varying degrees of pain for over a year - unnecessarily it seems. You might have to go private for this.

[Gimme in reply to Creas]

Thank you. I doubt that would help. It's the muscles in my upper arms. I won't be seeing my doc until I get back from my break, but he's usually pretty thorough, so I'll see what he says.

[Creas in reply to Gimme]

Same here, upper arms. I was amazed what a difference the injection made. They're only meant to last a few weeks/couple of months but my pain never came back after the injection last April.

[PMRpro Ambassador in reply to Creas]

That is what happened after the steroid injections I had in my back - pain gone longer term and in places I didn't expect!

[Creas in reply to PMRpro]

That's great news! Sometimes things just work - who cares why! Though of course it would be useful to know. These injections cost nothing (Pred no longer under patent, costs pennies) and many GPs can administer them - I wonder why they don't use them more often. Is there a rational reason for the medical profession disliking Pred, or is it just because pharma get no kick back?

[PMRpro Ambassador in reply to Creas]

It isn't as simple as cost - other considerations too.

Too many repeated joint injections are not recommended as there is evidence they damage surrounding tissues and there is ALWAYS a risk of infection - and you don;t want an infected joint. Mine were not into joints except for the SI joint and a GP couldn't have done that - my rheumy did it under ultrasound guidance to reduce the risk of catching a blood vessel because of the risk of bleeding. The others were for painful muscles rather than joints.

versusarthritis.org/about-a....

[Gimme in reply to Creas]

I very much doubt that the injections are cheap as such, though I haven't checked the price. Parenterals have to be manufactured under very strict aseptic conditions and their storage and transport is often considerably more troublesome than a pack of tablets. Then you need to factor in costs associated with needing someone to administer them and all the associated infrastructure that requires.