Help! Shaggy dog story and a question

[Coco63]

Hello All,

I hope you won’t mind a rather long history, which you could read before bed to help you nod off, but also hope you might be able to relate to.

I’m a previously active woman, diagnosed with PMR in April 2021 though think it began on holiday in August 2020 (at 56).

My symptoms were quite random at first, neck/shoulder/back/hip pain and stiffness which would start on one side and then the other, then both, where it settled, but as soon as I thought I’d got a handle on the Beast, it changed tack! We were on our boat at the time and I noticed that I couldn’t hop about the deck as well as I usually had and started to wonder if old age had suddenly arrived!

Back home the pains and stiffness continued but would have some days when I felt ok and thought the mysterious thing must have gone, though over time came to realise this just meant it had gone away to regroup and return with a vengeance.

By Christmas, the symptoms were generally getting worse and the pain was everywhere, and (rather dramatically) recall one night, flat on my back unable to turn, feeling like I’d been run over by a coach and horses and all bones were broken.

I tried many times to see a doctor without success and found it difficult to describe symptoms over the phone. I also felt guilty bothering them when it seemed a minor problem compared to all the serious covid cases. I eventually saw a nurse who found nothing specifically wrong. Another phone all to the doctor who concluded it was just muscular and was prescribed various painkillers which did nothing.

By April, I was getting additional pains in my ribs, was desperately tired with resting making things worse, and unable to breathe properly without stabbing pains. I couldn’t get out of bed unaided/struggled to walk /couldn’t lift my arms or dress myself. I realised this was ridiculous and decided I needed to pay to see someone, and it was actually a very sympathetic osteopath who suggested PMR. I then insisted on seeing see a doctor. Success! Blood tests showed ‘some inflammation’ and was prescribed 15mg of Prednisolone which of course worked like magic!

Fast forward to now. (If you can bear it)! My husband and I moved to Corfu last April where the diagnostic health system is fantastic and extremely efficient. I have been seeing a rheumatologist who posed the question do I have PMR or that in conjunction with something else/ie fibromyalgia or neither of the above as my blood tests have been completely normal apart from high cholesterol. I had been going well on the DSNS as recommended by this great forum and was down to 6mg - not completely pain free but manageable. Rheumy put me on 4mg Mon Wed Fri and other days on 6mg for a month then 6mg - 3mg then 5mg and 3mg. Are you still awake? We’re coming to the end!

A few days ago, and armed with new ‘perfect’ blood results, she has prescribed 3mg everyday coupled with a very small dose (half of 2-10mg) amitriptyline to take at night not for depression but for additional pain relief. I have put off taking this as I was worried about feeling sleepy in the day coupled with it being yet another drug and the fact I have family coming to stay soon and we’re bound to party and I read you must not drink any alcohol with this drug 😱 however, day 5 on 3mg and I had excruciating pains/spasms in my upper back last night and this morning so I could barely move so have taken 5 mg today in order to function. Hip/ groin/neck stiffness too. I also began taking statins 3 days ago could this have an effect? Apologies for the very, very long tale. Thanks for listening any thoughts/ideas welcome xx

[SheffieldJane]

A very interesting and very relatable story. The first thing that strikes me is that of course your blood tests are perfect, you are on the most powerful anti inflammatory drug duh!

A positive response, dramatic even, is usually enough to diagnose PMR.

I would hazard a guess that your current suffering has all been caused by being raced off Prednisolone. Your symptoms are classic for PMR.

Amitriptyline is useful to aid sleep and possibly to help tolerate mild aches and pains.

Statins unfortunately, can cause or make worse aches and pains. Raised cholesterol is a well known side effect of Prednisalone. It comes down as you reduce your Pred dose and pay attention to the fats in your diet.

I think you need more Prednisalone and when things settle, a slow and careful tapering programme as outlined in FAQs on this website, I see that you are familiar with the method.I would be inclined to return to a comfortable dose of Pred and stay there for a few weeks. If Amitriptyline is not adding value, then come off it gradually. Then party within reason because your disease is clearly still active. There is little point in taking less Pred than you need. It is not curative, it simply deals with harmful inflammation, pain and mobility problems. It is key to pace your activities with rest breaks. The end part of this disease needs careful management, rush it and you will end up back where you started, no matter what some doctors like to believe.

[Hidden in reply to SheffieldJane]

Amitriptyline! It is like a miracle drug to me... My GP prescribed it as I was forever knackered and unable to sleep. Low moods etc. I feel good now.

[SheffieldJane in reply to Hidden]

It certainly helped my insomnia at one point but did nothing for PMR type pain except enable me to drift off to sleep in spite of it.

[Hidden in reply to SheffieldJane]

I still get the pain :/

[piglette in reply to Hidden]

Amitriptyline is a great drug to help the side effects of the steroids. It is steroids for PMR itself.

[Coco63 in reply to Hidden]

Thanks davidcantswim that’s interesting to know. I don’t worry too much about not sleeping I can’t remember when I did! (sleep) 😂 and I’m not depressed so I would only consider taking it if it would noticeably help the PMR pain, but reading SheffieldJane ’s comment I have my doubts!

[Coco63 in reply to SheffieldJane]

Thank you so much SheffieldJane for your detailed reply. I also put it to my doctor that the absence of inflammation could be due to the pred but he seemed to just go by the results. Much as I was excited by the rheumy reducing to 3mg I was a little skeptical and concerned it might be too much of a drop having gone so carefully on the DSNS up to this point. The 5mg plus paracetamol I took this morning has brought me from agonising immobility to feeling quite human! So I think you’re right up the pred and reduce slowly. Thank you 🙏

[SnazzyD]

As per usual I’ve got questions. So where does the possible fibromyalgia diagnosis come from? Is it because you have continuing low levels of pain? Do they hold the belief, like many doctors, that PMR should have burnt itself out in 2 years?

Dose swings like yours would have kicked off withdrawal symptoms such as aches and pains. With that regime I’d be in a permanent state of vague discomfort. I had to drop in 0.5mg drops eased in over weeks.

You also have adrenal function to think about. Have you read the adrenal section in the FAQ’s to the right of the page?

At what dose were you most comfortable? Might be worth experimenting with the Amitriptyline on one of the lower dose days and see if it does help to humour the doctor. They might meet you half way if you’ve at least tried.

[Coco63 in reply to SnazzyD]

Thank you SnazzyD , no idea where the rheumy’s fibromyalgia came from, but I did get the impression she thought it should be gone now (post 2 years) and had been replaced with something else. We do have a bit of a language problem on both sides! Thanks for reminding me about the adrenal info on the FAQ’s it was good to refresh my memory about it all. I think I was most comfortable on 8mg (15 was fantastic as I had an irresistible urge to be dancing and singing but I realise I can’t go back to that)!😂☹️ Probably sensible to try the amitriptyline but I think I’d rather wait for the family to go and start in earnest.

[SnazzyD in reply to Coco63]

Sounds sensible to have the decks cleared before starting the amitriptyline. Yes, 15mg would have given you false energy and your cortisol was well covered in excess and at 8mg you would have been breaking even or a bit in excess but not enough to cause as many of the other side effects. It doesn’t feel good to be going back into feeling rubbish again does it? But it’s a necessary evil providing your PMR isn’t still active.

[Coco63 in reply to SnazzyD]

No, I hate going backwards, but I think I could manage on 5mg for another month and then reduce by half each month and see how it goes. Five feels like absolute luxury after the brutal 3!

[PMRpro Ambassador in reply to Coco63]

Even 1/2mg a month at that level is pretty speedy and you body may not keep up!

[SnazzyD in reply to Coco63]

Keep an open mind; you can only go as fast as your adrenal glands recover.

[Coco63 in reply to SnazzyD]

Ah ok, what do you think might be best - maybe back to the DSNS?

[SnazzyD in reply to Coco63]

Well you can try 0.5mg per month band then sit for 2 weeks on the new dose and see. We’re all different. I did my own haphazard version of DSNS, sometimes taking 10 weeks or more. You may not suffer as much as I did with low adrenal function, but you need to be aware and flexible of your body’s response rather than going by an arbitrary plan on paper come bell of high water.

[Coco63 in reply to SnazzyD]

Yes, absolutely - lots of sucking and seeing to be done!

[DorsetLady PMRGCAuk volunteer]

Agree with SnazzyD -too much faffing about with doses by Rheumy , plus add in the adrenal time-bomb -and it’s a wonder you’re not sure if you’re on your a** or your elbow…

As for “perfect” blood -only shows Pred is doing some good -not PMR has gone .

Where do some of these Rheumies’ ideas come from?

Statins -could be causing some issues, but there’s rather a lot of things in the mix to say definitely.

[Coco63 in reply to DorsetLady]

Agreed, I spend quite a lot of time not knowing if I’m on my a** or my elbow with this thing! 🤣 I’ve no clue where rheumies get their ideas I think they must just read about it in a book a use that as their benchmark. I paid £250 at the start to see what I thought was an expert before committing to a long term drug. I got the usual - start at 15mg for 1 month then 12.5mg I month then reduce 1mg per month and hey presto it will be gone! He told me quite categorically I’d have it for a year. 🤨

[DorsetLady PMRGCAuk volunteer in reply to Coco63]

Well there are guidelines -which do work for a lot of people and do quote 2years… but they are only guidelines and do say that tapering should be adjusted for individual patients but as we know on here many doctors don’t seem to read that bit!

There are a lot of patients whose illness does not “follow the book” and then some doctors seem unable to think outside the box and blame the patient rather than query the process.

You would hope they’d learn from experience -but I guess if their patient moves on to a more enlightened Rheumy, then the original one blithely assumes they are “cured” -and that reinforces the myth.

[PMRpro Ambassador in reply to DorsetLady]

Nice mention of duration in this quite new offer

ncbi.nlm.nih.gov/pmc/articl...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Wish this information was better known - would save a lot of stress on patients...particularly the 51% still on steroids 2 years & 25% on 5 years after diagnosis!

There are no validated guidelines on the optimal duration of GC therapy in PMR and data available in studies are not consistent. In a study by Healey, only 30% of patients were able to stop GC therapy and remain asymptomatic within 2 years of follow‐up while only 2% were able to stop GC completely within 6 months [54]. In a meta‐analysis by Floris et al. including 21 studies eligible for analysis, 77%, 51% and 25% were still on GC after 1, 2 and 5 years from diagnosis [75].

[Coco63 in reply to DorsetLady]

Indeed! I’ll pass this on to my GP and rheumie 😁

[DorsetLady PMRGCAuk volunteer in reply to Coco63]

Good luck with that then🤣😂.. but have to agree with others you need a really slow taper that suits you not them…

[PMRpro Ambassador in reply to DorsetLady]

Quite - but it was only published in November ...

Should be compulsory reading for all who want anything to do with PMR if you ask me!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Absolutely!

[Coco63 in reply to PMRpro]

Yes, interesting detailed report.

[PMR2011 in reply to PMRpro]

great article, thanks for sharing!!

[Coco63 in reply to DorsetLady]

So true!

[DorsetLady PMRGCAuk volunteer in reply to Coco63]

might like to add this for those doctors who worry about side effects -

.”Patients with PMR have a high rate of comorbidities associated with GC treatment such as osteoporosis, vertebral fractures, infections, cataract and glaucoma [96]. However, in a population‐based cohort study from Olmstead County, Minnesota, USA, it was only cataract that was more common in patients with PMR followed for a median of 5.8 years compared to age‐ and sex‐matched comparators without PMR [97]. Possibly, the nonincreased risk of osteoporosis and fractures could reflect common use of osteoporosis prophylaxis in this group of patients with planned long‐term treatment with GC and with other risk factors of osteoporosis. Such patterns may depend on access to care in different populations”

[LucilleG in reply to Coco63]

After I was first diagnosed, I asked to be referred to a rheumatologist (now I’m wishing I hadn’t). The GP told me that the waiting list could be up to a year and that by then, my PMR would have gone into remission...if only!

[Coco63 in reply to LucilleG]

How ridiculous. On both fronts!

[PMRpro Ambassador]

All sounds very familiar - and as already mentioned: of COURSE your bloods were in range, they should be when you on an adequate dose of pred and will only rise when you get to too low a dose of pred. Into the bargain - the blood markers in some people don't rise as quickly as the symptoms or at all when the patient is still on pred at all.

But at 5mg or so the adrenal conundrum turns up and you need to reduce the dose MORE slowly, not faster, to allow the adrenal function to return slowly, it won't hurry up, it also marches to its own drum. The trouble is, the symptoms of adrenal insufficiency can be similar to changing the dose of pred too quickly/too much and to returning PMR.

And I would stop the statin until the rest is sorted out - I have twice started a statin and had a flare/deterioration of symptoms within a couple of weeks. It complicates the picture. Your PMR is still active, you were on enough pred, you aren't any more. You need at least 5mg at present. End of ...

[Coco63 in reply to PMRpro]

Thanks PMRpro insightful and sound advice as usual! Unfortunately I didn’t see the bit about stopping the statins and took one last night and within a few hours could barely turn in bed due to the upper body/rib/muscle pain. I took 5mg again this morning with paracetamol and 3 hours later starting to feel more operational, though still have slight stabbing pains on breathing in, better than first thing though. I think it told me what I needed to know! My rheumie and GP seem to be at odds with the statins. GP didn’t seem to want me on them but rheumie said she thought it was dangerous for me not to be on them. Hard to make sense of in Greek but my cholesterol was 259mg/dL (130-200). HDL 83. (_> 45). LDL 165 mg/dL (35-150) The rheumie said that a person with an autoimmune disease should achieve levels of less than 70 LDL and told me to tell my doctor. It is a bit of a conundrum, I don’t want to get the PMR under control but die of a heart attack/ stroke 🤷‍♀️ Anyway, I’ll see my GP today and see what he says but I think dropping the statins is the way forward for now.

[PMRpro Ambassador in reply to Coco63]

I have been put on ezetimibe which has brought my cholesterol down though not as much as a statin would - however it plus bempedoic acid apparently is as good as a statin. Some people find they are OK on another statin - some have had to try a few before getting the right one.

Lot of dispute about cholesterol and women - it is said they don't reduce the risk in a woman with no past history of cardiovascular events, That changes post an event and they improve men's risks.

[Coco63 in reply to PMRpro]

That’s very interesting, I’ll mention this to the GP 🙏

[KASHMIRI1]

I stopped taking atorvastatin because of muscle and joint pain. It took a while to manifest at least two months. I am yet to inform my GP about my actions. The pain has gone apart from issues related to something else.

[Coco63 in reply to KASHMIRI1]

The last thing we want is more muscle and joint pain, it seems to be a double edged sword juggling all these drugs!

[KASHMIRI1 in reply to Coco63]

Juggling drugs is a necessary nuisance isn't it. My cholesterol level has increased since stopping the statins so will need to speak to my GP who may not be best pleased. The statins at work fine for you. My husband has taken them for over twelve years with no adverse effects.

[Ruins67]

Funnily enough your length of time and subsequent diagnosis of PMR is almost identical to mine. Probably just not as long before it was diagnosed. Mine started autumn of 2020, I kept taking high doses of ibuprofen and paracetamol. By the time I got to the doctor, he told me I had to stop as it could be damaging to my organs. The reason that I went to the doctor was I had given the symptoms to my osteopath (whom I was seeing regularly for pain) and she diagnosed PMR. Rheumatologist at hospital was doubtful, partly because having put up with it so long I was still functioning better than most. However the blood test did indicate a high degree of inflammation, so I was put on 15MG. I then followed a timetable laid out by the rheumatologist of reducing by 1MG every two months. By the way, I’ve never been back to the rheumatologist and only had one phone call from hospital since. By rights, I should’ve been off prednisolone by now according to the timetable, but I had a flareup at the beginning of this year with a chest infection followed again by another chest infection. I’ve been fine since then and I’m now down to 1.5 having been on 2mg for about three months. I intend to stay at 1.5 for about another month and then reduced to 1MG.

I occasionally get some stiffness, but I find paracetamol will cope with that. As already stated elsewhere, I also think you’ve probably been reducing too quickly and I don’t quite understand the different amounts on different days of the week. Perhaps go back to an amount you can function at and then reduce very slowly. By that I mean become fairly stable at a dose for at least a month or two before you reduce it by 1MG. As you get lower, you might want to extend the stability period and then start reducing by half MG. It’s a pain chopping tablets in half but I do quite a lot at a time and keep them in an empty pill bottle separately. So far I wake up most mornings forgetting I’ve got PMR. Good luck. 😊

[Coco63 in reply to Ruins67]

Thanks Ruins67 that’s interesting they’re similar stories/timelines. Fantastic to hear you’re down to 1.5mg I’d be very happy with that! I think I’ll go back to 5mg for a month or two and let things stabilise and reduce slowly to something like half mg per month as you say. We don’t have tablet form steroids in Greece only liquid so easy enough to administer with syringe!