Tapering after a flare

[Babysingstheblues]

Hi all, I have just discovered this forum and have been devouring the information here. So many of my questions re side effects, etc. have been answered in previous posts. I live In the province of New Brunswick, Canada where there are 45,000 people without a GP and where the Rheumatologists are so swamped that it takes at least a year to get an appointment after referral! My young GP really knows very little about PMR and so I have had no access to anyone who can answer my questions knowledgeably. This resource is a Godsend for me!

I was diagnosed by my GP April 2020 with PMR, started on 20 mg prednisone, upped to 30 mg after a few days as I was still having some discomfort. Was told that “We now realize that we don’t need to start people on as high a dose and you should be all done with this in 3 months”. So I have had very unrealistic expectations about how quickly I should have been able to get off the prednisone. I started what I realize now was a ridiculous taper from 30mg...dropping by 5 mg every week until I got to 1 mg where I was supposed to remain for a month. Got to 5 mg and had a major flare, was put back up to 15mg for 10 days, 10mg for 2 weeks, followed by a 1mg drop every 4 weeks. Felt great till 2 weeks into 4 mg when I flared again. But it was just my hips this time and it was two weeks after my last taper so doctor thought it was not a flare...so I tried physio. That didn’t help so I eventually decided it had to be a flare and asked doctor what dose I should return to. His suggestion was to go up by 1 mg every three days till I reached a pain free dose...and you guessed it...it was 5 mg higher than the dose I had flared on. He then told me to drop back to 5mg after 9 days at 9mg. That made me very nervous so I decided to split that drop into 2 drops and I went down to 7 mg...had another bad hips flare. Next day I went right back to 9mg but still a lot of pain. I discovered this forum just after my 7mg flare and have been reading and reading. I so wish I had found it sooner! I could have found my sweet spot by now and be on a lower dose with a much slower taper.

So my question is where do I go from here? After 1 day on 9mg I went up to 10mg for last 3 days and although I’m a bit better, still having some hip pain. Should I go up 5mg from the 7mg flare to 12mg? And if so, do I need to do the really really slow taper from 12 to 10 or just from 10 down? My only rush to get lower is that I have osteoporosis and am very worried about my bones...would feel so much less concerned at a dose below 7mg.

Thanks in advance for any advice!

[SnazzyD]

Welcome from the UK. Jeepers! That’s quite some journey. On the plus side your doc admitted they didn’t know much but on the negative side didn’t then update themselves. There are some docs who think you zap it with a high dose and then scorch down the reduction ladder to a cure. The trouble is “it” is your autoimmune activity which isn’t affected by Pred, which is only there to stop the inflammation causing havoc while your body decides when to calm down. That can take a few years, not months. Mucking about going up and down really does you no favours and as you say, you could have found your “sweet spot”. No you don’t want to be on Pred but your haywire immune system is in control and doesn’t tend to negotiate. You’ll get some informed opinion here, but if it were me I’d go back to 15mg and stay there for a month and only reduce if symptoms are under control. There are recognised reduction plans, none of which have been used so far and even then, some find them too fast. Symptoms rule not a schedule but it’s a start.

[Babysingstheblues in reply to SnazzyD]

Thank you for your reply! I have gone up to 15mg as several of you have suggested...on my second day now and still some hip pain. I can’t talk to my doctor till Wednesday and aside from being tired of dealing with pain since the 28th December, I am lacking confidence in his advice. I’m determined to go down more slowly this time than the 1 mg drops he recommends.

Actually he hasn’t admitted to a lack of knowledge re PMR...I have deduced that from his answers and strategies for tapering.

[123-go]

So pleased you have found this group. You'll have experienced people coming along soon to advise you but I will, like Snazzy, say 15mg is a good idea although 12mg may do the trick. You really need to get on top of inflammation before you reduce.

As your doctor has little knowledge of PMR he may be receptive to information you can present him with. Our experts here will, I'm sure, give you some help with that and then you could work together to make a plan at least for the shorter term as you will need to re-assess as you go.

[Babysingstheblues in reply to 123-go]

Thank you for your reply! I have gone up to 15mg as several of you have suggested...on my second day now and still some hip pain. I can’t talk to my doctor till Wednesday and aside from being tired of dealing with pain since the 28th December, I am lacking confidence in his advice. I’m determined to go down more slowly this time than the 1 mg drops he recommends. Will talk to him about that, but I doubt he will have an issue with it.

[PMRpro Ambassador]

"We now realize that we don’t need to start people on as high a dose and you should be all done with this in 3 months"

I'm speechless - what they DO know is that PMR lasts LONGER than many of them think so the lord only knows where they came up with that from!!!!

Have you had a dexascan to know you have osteoporosis? How bad is it? What bone protection medication have you been offered, if any? At the very least you need to be on calcium and a good dose of vit D.

Is your GP amenable to being educated do you think?

ard.bmj.com/content/74/10/1799

medpagetoday.org/rheumatolo...

practicalpainmanagement.com...

rcpe.ac.uk/journal/issue/jo...

should provide them with a rather better grip of PMR - though even that lot leasves a lot to be said! Not least that everyone is different and dose, reduction and everything else varies between patients. We aren't machines with identical parts.

[larkthebark in reply to PMRpro]

I have just looked at these articles and am somewhat confused. They describe PMR as a condition that causes joint pain but from my own personal experience and the information from this site the pain is largely in the muscles !

I am dismayed at hearing the treatment and false hope some people have received from medical personal. My GP has admitted that I probably know more than he does after all my research which I do send him but not sure he has had time to look at the articles .

[PMRpro Ambassador in reply to larkthebark]

I know - but finally it is being admitted that PMR affects the soft tissue surrounding the joints and not the joint itself other than the synovium which is what probably leads to any joint pain. OTOH, now you get doctors telling you that the knee pain you are feeling is not due to PMR when it is!

[larkthebark in reply to PMRpro]

Yes, some get pain in the ankles , hands and feet and get told it cant be PMR as it doesnt affect the extremities.

So frustrating. They were interesting articles though and reassuring that pred doesnt necessarily affect your general health as much as first thought.

If anything perhaps people are more careful with their diet and general health when they have steroid therapy .

Thanks for your response.

[PMRpro Ambassador in reply to larkthebark]

Oh yes - I had hand and feet pain but the GP didn't know what it was because my blood markers were innormal range!

Don't worry - I AM on a mission to educate opinion leaders in the field and at least 2 internationally known names are getting the hang

[PMRpro Ambassador in reply to larkthebark]

Forgot to say, the stiffness tends to affect the proximal extremeities (near the trunk) , but RS3PE syndrome is often part of PMR and IT affects the distal extremities (further away so feet and hands) with swelling and pain that can reach the knees or elbows.

[larkthebark in reply to PMRpro]

Have just read an article about this.......very complex condition and just shows how medics need to ensure they have covered all potential diagnoses by exclusion.

I am comfortable with my diagnosis but glad I have some insight into treatments etc. Partly because of my background and partly due to this very good informative forum.

Thank you

[pomeranion in reply to PMRpro]

What is RS3PE syndrome? Please educate me. Thank you.

[PMRpro Ambassador in reply to pomeranion]

ard.bmj.com/content/58/4/230

has a good description I think

[123-go in reply to larkthebark]

Before I was diagnosed my feet became so swollen that I had to wear slippers to my first rheumatology appointment. My hands were extremely painful and I used to wake up with the fingers curled. I had to straighten them one by one. The pain reduced dramatically on 15mg.

[PMRpro Ambassador in reply to 123-go]

That's probably RS3PE syndrome - swollen hands and feet ...

[Babysingstheblues in reply to PMRpro]

Thanks for your quick reply! Really appreciate the inforative links!

That statement about how quickly I should be all done with PMR was actually the PG who was filling a paternity leave for my regular GP when I was diagnosed and for the first 7 months. I could write a book about her mishandling of the whole thing. She didn’t ask, in initial interview re symptoms, if I’d had any new headaches (or any of the GCA questions)...which I had but didn’t link to the full body joint pain I was having. When I’d been on prednisone for 2 months and had my first flare I happened to mention that “even my headache is back” and she jumped right on that. Ordered a biopsy, which I did have done but obviously 2 months of prednisone would have affected the results...which I fully expected therefore to be negative, but which were inconclusive. So I really don’t know for sure if I have GCA or just PMR. I’ve been going to my ophthalmologist regularly to check my optic nerve etc for this reason. My GP is now back but has very little first hand experience with the disease. I desperately want to talk to the rheumatologist but can’t get an appointment yet.

Re osteoporosis...I was diagnosed osteopenic in 2001, took Fossamax for 7 years before learning they now recommended only 5 years. So I discontinued. Was already taking vit D and calcium, as well as weight training. Decided against other medications for bones, but my scores were decreasing in scans every two years. Researched ways to gain bone and discovered articles in peer reviewed journals re Vit K2. Felt that diet should supply adequate K2 except for MK-7 which I felt probably wasn’t covered by diet now that we don’t use fermentation as a major way of preserving foods. Started k2 MK-7 supplement just after my 2015 scan. My lowest scores were that year: Spine -2.2/Femoral Neck -1.9/Femur -1.4.

After 4 years of MK-7 (2019) my scans were: Spine -1.4/Femoral Neck -1.9/Femur -1.2. So a big gain in the spine and no losses in the other two! I also feel the weight training is very important, even though I was losing bone before the MK-7, I’m sure I would have been losing more bone without it.

Since I initially was told I’d be done with prednisone in 3 months I haven’t considered bone meds. Really didn’t want the side effects if could be avoided. Since all was going well till I got to 4mg I thought I’d be done by April and had asked to have a scan done then. Now that I realize I’ll be on prednisone for far longer I’m anxious to get the scan and see where I stand after a year. Not sure what I’ll do if I’ve lost significant bone. Was VERY heartened to read links you sent re long term prednisone may not be as hard on the body, including bones as originally thought. I am on Calcium and D and eating lots of cheese, broccoli, almonds etc.

[PMRpro Ambassador in reply to Babysingstheblues]

I hope HeronNS sees this post - she is our K2 disciple and improved her t-scores with diet.

[123-go in reply to Babysingstheblues]

A practice nurse once told me not to 'Google' symptoms. Where would we be if we didn't research our symptoms and question things? Equally important are the long-timers and experienced people here who do the job of some professionals?

[PMRpro Ambassador in reply to 123-go]

There would be a lot more blind people if they hadn't googled and found us!!! I know I personally have sent at least half a dozen people to A&E where they have been diagnosed with GCA - not to mention the loads who found the forum and learned enough to recognise what might be happening.

[123-go in reply to PMRpro]

Those people have a lot to thank you for. ⭐️

[pomeranion in reply to Babysingstheblues]

I have osteoporosis also. My Dr. has put me on high calcium and Vit.D3 but never mentioned K2. Been doing my own research and discovered the benefits of K2 concerning directing calcium to bones not arteries. Very disappointed in Dr. Since have discovered K2Mk-7 information. Can you offer more information? Am currently just supplementing with calcium, K2 with D3. Need to reorder. Please advise. Also multivitamin, glucosamine/chondroitin and tumeric.

[piglette]

Where on earth do some of these doctors read up about PMR? I cannot believe that some of this information has ever actually been put in print, as it is SO wrong. I think I would go up to 12mg if not higher and see if things are improved. If things are OK you can reduce back to the original dose within about a week or so. If longer you will need to taper.

[Babysingstheblues in reply to piglette]

Thanks so much for your quick reply! I have gone up to 15mg. Second day today and still hip pain...was hoping the higher dose would kill it...maybe tomorrow.

[PMRpro Ambassador in reply to Babysingstheblues]

It took me a few months to get rid of the probably bursitis pain in hips and tenosynovits in hands and feet.

[HeronNS]

Re the osteoporosis worry, have a read of this for some ideas about how you may be able to maintain your bone density even while on pred.

healthunlocked.com/pmrgcauk...

Wherever the information came from about PMR and pred dosing it is so completely wrong it's as though it's written for another disease.

[PMRpro Ambassador in reply to HeronNS]

Probably was ...

[Babysingstheblues in reply to HeronNS]

Thank you for the link to the excellent post on increasing bone density! Some of the strategies are things I have been doing:

I was diagnosed osteopenic in 2001, took Fossamax for 7 years before learning they now recommended only 5 years. So I discontinued. Was already taking vit D and calcium, as well as weight training. Decided against other medications for bones, but my scores were decreasing in scans every two years. Researched ways to gain bone and discovered articles in peer reviewed journals re Vit K2. Felt that diet should supply adequate K2 except for MK-7 which I felt probably wasn’t covered by diet now that we don’t use fermentation as a major way of preserving foods. Started k2 MK-7 supplement just after my 2015 scan. My lowest scores were that year: Spine -2.2/Femoral Neck -1.9/Femur -1.4.

After 4 years of MK-7 (2019) my scans were: Spine -1.4/Femoral Neck -1.9/Femur -1.2. So a big gain in the spine and no losses in the other two! I also feel the weight training is very important, even though I was losing bone before the MK-7, I’m sure I would have been losing more bone without it.

I was also intrigued by the links from PMR Pro relating to less damage than originally feared from prednisone...cause for optimism!!

[HeronNS in reply to Babysingstheblues]

That is brilliant!

[PMRpro Ambassador in reply to Babysingstheblues]

My bone density has hardly changed in over 11 years on pred - it isn't inevitable but you do need to check,

[HeronNS]

If you feel like investing a bit of money in educating your doctor (and perhaps his colleagues also) you could give him a gift. This book: Polymyalgia Rheumatica and Giant Cell Arteritis, edited by Bhaskar DasGupta and Christian Dejaco.

It's written by two acknowledged experts in the field. Available from Chapters, but it is expensive. It's written for professionals, but you'd probably like to read through it before passing it on. There's a nice chapter for patients written by Kate Gilbert. I bought a copy and gave it to my doctor who, btw, was a lot more educated in how to handle PMR than yours seems to be. Eventually I got the e-book edition for myself. It was a brand new item when I got it, now going on five years since published, but most of the basic info will still be relevant.

[PMRpro Ambassador in reply to HeronNS]

It still has some bits we'd prefer doctors didn't take notice of!!!!

[HeronNS in reply to PMRpro]

Time for a second edition closely examined and approved by people like you and DorsetLady!

[DorsetLady PMRGCAuk volunteer]

Hi,

Have a read of this - and maybe give your GP a copy!

healthunlocked.com/pmrgcauk...