Is it ok to let PMR get worse before starting treatment?

[Willowherb35]

I’m 85, normally active and fit for my age and a good weight. I had GCA in 2015 and started on 60mg prednisolone. The usual side effects but quite extreme - including a degree of paranoia! I weaned off preds in 2 years. Had a GCA relapse (biopsy confirmed) in 2019 but only prescribed 30mg given my history. Pred free within 2 years. I didn’t contribute much to the forum then but followed it - and I still get updates and lurk! You’re a great community.

For the last 7 weeks I’ve had all the symptoms of PMR but the relevant bloods (CRP, blood plasma) are in normal range. The Gloucester RH lab have introduced a new system whereby the GP practice nurses fill the long thin ESR tubes to save time at the lab. Unfortunately, the nurses have not been trained with them, 4 different nurses have failed to fill the tubes properly over 6 weeks and the samples have not been useable.. Not creating the vacuum apparantly.

The GP agrees that “almost certainly” l have PMR but “it may possibly be something else” and he’s ordered additional bloods as well as ESR.

I’m prepared to hang in there and not start preds yet ‘just in case’. Meanwhile my symptoms worsen and although I can cope I don’t feel at all well now. (Proximal stiffness not easing at all and crushing fatigue). Will this 2 month delay mean that I’ll need more preds to reduce the worsening symptoms or doesn’t it make any difference?

If treatment for (probably) PMR is delayed much longer, will I be at greater risk of GCA again as well? I would be so grateful for any advice..

Willowherb

p.s. I await the new tests next Friday..

[SnazzyD]

On the other hand, a good response to adequate Pred is a good diagnostic guide. Why wait? If it is effective, you need it. If it isn’t, you can stop quickly.

Not sure what you mean by the ESR tubes. When I used or take bloods for ESR, they were always long and thin with purple tops. They also had to be full and not half will do like with other types of tube, and they had to be filled before all other tubes.

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

My blood test tubes are same as they have always been.., albeit no longer ESR…

[DorsetLady PMRGCAuk volunteer]

Agree with SnazzyD -you can always stop Pred if it’s not that so long as you haven’t on them more than 3 weeks… so why wait and be in pain.

[Willowherb35 in reply to DorsetLady]

Thank you SnazzyD and Dorset Lady for such quick replies. My response to preds in the past has been total relief of symptoms within hours. I would seem to be very responsive but maybe with that come the extreme side effects. I live alone now but my good friends are aware that I go a bit weird and make allowances! Maybe I should start at 15mg then? Or try less? I think I can talk the GP round…

The tubes thing: blood used to be taken in the normal tubes - in Glos at least. Presumably they were decanted at the lab. GRH recently issued the thin ones directly to GPs but the practice nurses complain about them - not least the tiny labels - and can’t seem to manage to fill them properly and create the vacuum. That’s all I know about it. . I’ve had 4 unusable samples and I’m obviously not alone. It’s wasting a lot of time for the nurses, GPs - and the patients of course.

I feel less alone after contact with you.. thank you !

[DorsetLady PMRGCAuk volunteer in reply to Willowherb35]

If it is PMR then you will start at 15mg as you say, and the side effects are likely to be a lot less than GCA doses [as both SnazzyD and I know]… so please try it. You may getaway with a slightly lower dose, but you may not!

[PMRpro Ambassador in reply to Willowherb35]

The problem is that the samples start to deteriorate immediately they are taken and the test must be set up within 4 hours max or the result is "off". Presumably this was to try and obviate that but to be honest - sounds a bit like "I don't want to do this, it isn't my job!"

[PMRpro Ambassador]

There is no simple answer - as ever with PMR and GCA.

I had PMR symptoms for some 5 years before I worked out what it probably was and the GP referred me to a rheumatologist. I had a slow onset but otherwise fairly textbook presentation other than the blood markers were never out of normal range. They were raised for me though, at one point being in the mid to upper teens - my normal is low single figures. When the rheumy gave me a 6 week taper of pred, 2 weeks each at 15, 10 and 5mg and stop, I had a good 70% response in under 6 hours! And the symptoms were back 6 hours after missing the first 5mg dose. The rheumy wasn't convinced it was PMR - he thought it was an inflammatory arthritis - but after another 15 years there is no sign at all of inflammatory arthritis. However - I appear to still have PMR!!

It is said by some experts that not treating PMR symptoms increases the risk of it progressing to GCA - but there is no real proof of that. Nor is there any evidence that delay means requiring a higher dose. What a few of us would say though is that we think delay in the first place does seem to result in a longer duration or more difficult management of the symptoms. There is the problem of developing a chronic pain syndrome as the body learns and remembers the pain. And there is also a possibility that the immune system also learns the bad habits that cause it to attack the body tissues as if they were foreign. That said, many people are not diagnosed for months and it doesn't seem to end up lasting years and years. But it does frequently last longer than the claimed 2 years.

[Willowherb35 in reply to PMRpro]

Oh thank you PMRpro, that’s so helpful and you’ve covered everything that I was unsure about.

It’s relatively simple with GCA - there’s no hanging about, they give you 60mg of pred, it cures the symptoms and then all you have to do is taper! With PMR it is more subtle and there are some choices. ..

[PMRpro Ambassador in reply to Willowherb35]

Well - not THAT different!!! Except it is a far lower dose as there is no risk of visual loss which helps with the bad sides. 15mg was plenty for me but some need more at first - doesn't mean you need more longer term though. You just have to try with 15mg and see what happens - go to 20 if there is little effect after a few days. Or just plunge in with 20mg.

[DorsetLady PMRGCAuk volunteer in reply to Willowherb35]

It’s relatively simple with GCA - there’s no hanging about, they give you 60mg of pred, it cures the symptoms and then all you have to do is taper!

Hmm.. as you’ve had 2 episodes of GCA and tapered off both in 2 years maybe not as simple as you think. And the 60mg doesn’t cure the symptoms… it manages them until GCA goes into remission same scenario as PMR

[Willowherb35 in reply to DorsetLady]

Yes, I should have said hides or masks the symptoms. And I did put a ! after taper.. Tapering is the hard bit of course. And I was taken by surprise by the relapse as I didn’t realise you could get GCA twice! I live and learn..

[PMRpro Ambassador in reply to Willowherb35]

GCA and PMR are unusual as autoimmune disorders in that the underlying autoimmune problems almost always burn out and go into remission so you get off pred. But the predilection to flare up again never entirely goes away and while most are never bothered again, some do have second and even third episodes. It depends on how long the interval is - when it returns after only 6 months or so or less, it probably never went away at all, the disease activity was so low that even 1 or 1/2mg was enough to keep scooping out the inflammation created, zero was a step too far.

[DorsetLady PMRGCAuk volunteer in reply to Willowherb35]

Would say - maybe but never went away -even with the time between the two episodes.

Mine has been quiet for almost 8 years, but I always refer to it as being in remission rather than gone…hedging my bets there!🤣😂

[Dorsetdream1 in reply to PMRpro]

I apologise for butting in, I was interested to read Willowherb 35’s question and the reply’s . In particular your reply PMRpro. I wrote recently that I felt I have a flare up of PMR since tapering off pred completely. I have no pred to go back on and can’t get even a telephone consultation until 10th which means altogether 7 weeks since discontinuing Pred. Several of you wrote that I’d probably tapered off too early! I did an e consultation and from there have had blood tests ESR and CRP, I was really surprised that they came back within the normal range as I have many of the symptoms of PMR, especially stiffness, shoulder, neck discomfort and heaviness of upper arms. Seems I’m going to have to sit it out until next week but am worried they will say it’s not PMR because of the normal blood picture and if not then what? It’s really affecting my normal activities and I am beginning to feel unmotivated about things I used to enjoy.

[PMRpro Ambassador in reply to Dorsetdream1]

They take time to start to rise - and being in normal range isn't that indicative in the early stages, it is what they are doing over time. My personal normal is low single figures for ESR. during a really bad flare it ran at 16-18, still well within "normal range" but raised for me. It means a clinical decision - something a lot of doctors seem to struggle with these days. Other than trying OTC pain relief, especially including ibuprofen as an NSAID. in the meantime so you can say it doesn't work (if it doesn't) I can't really suggest much else. I found stretches done in a warm shower got me moving a bit and then the more I could move doing aquafit in a warm pool, the better day I had (I had 5 years with no pred). But when you DO speak to the doctor be as clear as here how it is progressing and the effect on your mental health as well.

[Dorsetdream1 in reply to PMRpro]

Thank you so much, that is really helpful and I will follow your advice. Ibuprofen hasn’t relieved it and Paracetamol helps in as much as a better nights sleep, but I am not going to get reliant on it. The stretching in a hot shower does ease it a bit temporarily. All the help and advice here on this site is amazing.

[PMRpro Ambassador in reply to Dorsetdream1]

I found a hot water bottle helped the stiffness during the day, albeit a bit impractical. The best part of the day was after my glass of wine with dinner!!! Vasodilation!!!!!

[Dorsetdream1 in reply to PMRpro]

Thank you PRM pro, I have used a microwave thing that helps a bit. Now there’s a good excuse for a glass of wine! I’m all for that.

[DorsetLady PMRGCAuk volunteer in reply to Dorsetdream1]

As PMRpro has said it takes time for inflammation to show in bloods [and for some they never do] - which is why we always bang on about symptoms being the key….and as you’ve tried other painkiller and they don’t work is more evidence if it being PMR.

[Dorsetdream1 in reply to DorsetLady]

Thank you for your reply. I did wonder if it was a time factor as on first diagnosis of PMR they were raised but that was prior to the steroid treatment which worked wonders for me 18 months ago. Currently ( since tapering off) I feel as stiff and uncomfortable as I did prior to treatment and regret the joint decision with my GP to taper off completely. The difficult thing now is getting to speak to a GP again! I have learnt so much since joining this community and would take my time to taper down and off in the future

[Rotsky]

So sorry for all that you are going through. I was down to 7mg pred for PMR then GCAand upped to 60mg, not ashamed to say I wanted to cry but understood that it was worth it. Hope you finally get a good result. All best wishes x

[Willowherb35 in reply to Rotsky]

Thank you Rotsky. I Hope you’re through it now… For my GCA relapse I was only given 30mg as I had rather over-reacted on 60mg and didn’t have any visual symptoms. It did the trick in my case though..