GP visit

[k-mac]

Hi there. I've had PMR/GCA for 10 years which once diagnosed was reasonably managed until 2018 when having tapered to 3.5 mgs, I was told to stop Pred within a fortnight by my rheumatologist who was confident it had gone. The resulting flare was worse even than the initial onset and after a good deal of persistence, a locum GP prescribed Pred. again which my then GP wouldn't doubtless bowing to Rheumatologist's superior knowledge.🙄I have never since been able to get below 4 mgs. About 3 years ago I started to experience lots of small joint pains . Rheumatologist diagnosed Sero negative RA and I was given Methotrexate which did nothing helpful. I saw Dr Hughes privately as feeling desperate who told me I might find I needed a low dose of Pred...forever! but that the hand join issues were very obviously inflammatory arthritis due to falling hormone levels. I tried Hydroxychloroquin but to no avail. The small joint inflammation has spread bit by bit to fingers and toes and is very red and painful. I have bilateral shoulder/arm pain which I attribute to PMR and over the last couple of months,very noticeable bilateral pain running from hip area downwards , particularly in the morning which is starting to affect walking. I have been treated with Pred. and Co codamol 30/500 for 5 years now but very aware that the new pain on walking is getting progressively worse and the fatigue which accompanied the 2018 flare has never subsided - I am of course significantly older tho!😆 I've a doctor's appointment tomorrow to discuss pain which I haven't done for years as I need to make choices re work etc( I'm 71 and love my work and pretty broke!...but the pain!) I would like to ask :

1. as I've been taking a low dose of Pred. (4mgs) for a year, can I have a Synacthen test to see how my adrenals are?It seems futile to attempt any further reduction if they have shut down.

2. I think I have read on here about someone having a PET scan to determine whether their pain was being caused by inflammation or arthritis. I may have misread this however but what I think I'd like to know is if there is a way of telling what is causing the bilateral hip pain on walking. If PMR, I'll increase Pred. but is there a way of being certain if its that or hormone related inflammatory arthritis.

3. Does anyone know anything about the latter and if HRT which I havent used or phyto oestrogen treatment might help. I know this is outside of the remit of this group but just in case anyone knows anything.I asked the rheumatologist who I see annually here last year and he rather shut me down.

Sorry it's such a long post but as it's taken 6 weeks to get an appointment and I may well see a doctor unfamiliar with the condition, I want to be sure I am asking reasonable questions.

Thank you

[Longtimer]

Sorry about all your struggles.....I had a PET scan a couple of years ago, it showed no inflammation, Rheumy said my symptoms must now be Fibromyalgia (not convinced)My sister has RA (zero negative) tried many drugs, settled on Sulphasalazine.....she has better quality of life than me....

I am on 4.5 mg..and will probably have to stay there!

[k-mac in reply to Longtimer]

Thank you. It’s so baffling to know what’s what and what is realistic to expect ( especially 10 years after onset 😩) and realising medical opinion will be so varied . When your PET scan showed no inflammation , did it show damage , … I guess not hence Fibromyalgia diagnosis . Hope you’re pain free on 4.5 🙏🌈

[Longtimer in reply to k-mac]

Firstly I was on pred 12 years for PMR.....no, no damage shown with PET scan....not pain free, sometimes flooded all over, then odd days it eases, but the deathly fatigue is the worst. Have tried all the drugs for Fibro, cannot tolerate them!Keep us posted.....good luck!

[k-mac in reply to Longtimer]

Thank you for the info and kind words. Seems a very similar experience in many ways and a friend with Fibro has suggested it might be that too. Can't believe the fatigue which I find v hard to accept!

[Longtimer in reply to k-mac]

A horrible struggle.......yes, always say, some things ease pain....nothing for fatigue.....tomorrow may be a better day....

[piglette]

Have you had your hips x-rayed? If they are getting worse it could be arthritis.

[k-mac in reply to piglette]

This is a question I need to ask the doc tomorrow.. as both hips started hurting suddenly simultaneously with a long pain🙈so wondering if PMR or inflammatory arthritis or something I haven’t thought of 😩🌈

[piglette in reply to k-mac]

Good luck

[PMRpro Ambassador in reply to k-mac]

Trochanteric bursitis due to low back problems might onset like that - if the iliopsoas bursa was more involved. Does the pain go down the outside of your thigh? Can you lie on your side?

[k-mac in reply to PMRpro]

Yes - can lie on either side, hip movements fine but sore - pain from gluts downwards when walking, generally moving legs etc. Not anything as disabling as untreated PMR (which first presented in groin/leg muscles) but I'm taking 4 mgs Pred (around onset of hip pain I had started the 7 week .5mg reduction in Pred - maybe coincidence?) - It's uncomfortable and it's starting to feel as tho all the pains are joining up 🙄and I want to try and sort out what's what and best pain management/ exercise etc. GP couldn't say a lot but says she will arrange hip xray to check for arthritis and speak to rheumatology re Synacthen test. GP mentioned how reducing Pred. means inflammatory non PMR pain previously masked by Pred. begins to manifest. Presumably the great dislike of Steroid means that Pred. won't be prescribed for these conditions even though it might reduce the pain? Interesting that Dr Hughes suggested to PMRDEC112014 and I that a 5mg maintenance dose is a lifetime possibility . Maybe there's a subtext that whilst it's poss the PMR might be in /out remission, this low dose might gently control other pain sources and increase QOL and allow for enhanced fitness. Thank you 🌈

[PMRpro Ambassador in reply to k-mac]

Even Dasgupta acknowledges that PMR can last lot longer than they ever admit with his habit of 2-3mg pred longterm. And the really good doctors know that anyway. Mine is still probably present after 20 years!! Less than 7mg results in bicep tendinitis within a few weeks, so bad I wouldn't be able to manage unaided, And the adrenals are decidedly flat after 15 years of pred.

[k-mac in reply to PMRpro]

I'm learning a lot! My biceps certainly protest now when lifting even light weights using the shoulder press. I guess it's swings and roundabouts and working out the lesser of the evils. I worry about the depressed adrenals but maybe I shouldn't so much. thank you

[PMRpro Ambassador in reply to k-mac]

Yup - always starts with a shout if I try to lift even a relatively light shopping bag. And if I persist at 6mg, after a few weeks even lifting the teapot hurts and then I can't twist my forearms. Really not practical!

[k-mac in reply to PMRpro]

That sounds so similar… I assumed PMR but if controlled by Pred. Does that matter ? Its complicated 🙈🤣

[PMRpro Ambassador in reply to k-mac]

I go for quality of life. Always. At 6 I'm definitely in adrenal territory if under stress and at 5mg I just feel decidedly yuk. Living alone and responsible for everything - 7mg it is!!

[k-mac in reply to PMRpro]

Hmmmm this is so me. A year at 4, trying to work which I love but also living alone trying to deal with everything, and related stresses , I’ve gone from ‘bring it on!’to ‘ow ow ow make it go away !’ Thank you I’ll bear this in mind 🌈kari

[PMRpro Ambassador in reply to k-mac]

My business had slowly closed down as clients used AI to translate, wallowing in the false belief that a few language courses made their English good enough to write reports. The sideline assisting my husband with bringing Proceedings to publication came to an end when he gave up - and Covid arrived. I loved working but I loved not working too - just as well as he then was terminally ill. All the "stuff" that goes with that needed a decent dose of pred and I am very lucky in my rheumy team who all appreciated just what a stress it all was and what that does to PMR. Now that is all behind me, I do feel a lot better but not better enough to go lower on pred.

[HeronNS]

I don't know if this is relevant to your situation, but.... I've been off pred since February this year, having started in mid-June 2015. Lately I've noticed increased pain in knees and hips, but they are not like what I experienced with PMR, and worsen with exercise. Finally figured out that because of unrelated issue (broken wrist and inability to do my usual exercises) I was probably experiencing increased pain because my muscles were weaker. Started the exercises again, now that I can manage them, and things are slowly improving. Should note that I do have osteoarthritis in knees, although last x-rays (10 years ago) showed none in hips. At that time, PMR as yet undiagnosed, I thought I should be getting myself into line for hip replacement because pain was so bad. Pred sorted that, and as my dose reduced and the pain started to come back I stumbled upon an exercise (for bursitis) which miraculously cured it. Hoping same happens this time, along with the other exercises I did after a couple of knee injuries which are designed to strengthen thigh muscles.

Long story, the point of which is: perhaps there is something "mechanical," so to speak, going on?

[k-mac in reply to HeronNS]

Thank you. That’s so interesting and worth exploring. I’m just trying work out what’s going on …. Inflammation response, mechanical disintegration 🙈or years of PMR pain response / fibromyalgia so I can make a plan as to how to manage it. Until recently I’ve been going to the gym , Pilates and yoga … lots of inner ow ow owing ! But mentally feeling so much better This new manifestation of pain has thrown me 🌈

[k-mac in reply to HeronNS]

Can you tell me the bursitis exercises ? 🙏

[HeronNS]

First of all I plugged my actual symptoms into google because I had no idea whether it could be bursitis, sciatica, or something else. Bursitis symptoms matched exactly. I tell you this because someone else I had given the link to found his symptoms got worse, and I subsequently discovered he didn't actually have bursitis symptoms, but some other hip condition.

I found these, but only did the clamshell. It helped very quickly.

myhealth.alberta.ca/Health/...

[k-mac in reply to HeronNS]

Thank you I'll check them out. Have no real problem with hip mobility...as yet!

[Blondgrassblowing in reply to HeronNS]

I was just browsing and came across your post. I too have bursitis of the hip bursa (both sides), so I'm going to give these a try. And to K-Mac, what a rough time you're having, hope things start to improve for you

[k-mac in reply to Blondgrassblowing]

Thank you. I will look into this - it was one of the initial diagnoses along with a bad back 🙄when PMR first arrived and my doc was convinced I was too young. Good luck 🌈

[pmrdec112014]

I too have had PMR for a very long time, 10 years in December.I have had flares over the years, uping and downing the prednisolone and until now had never been able to get below 4 mgs.

Currently this week I will be on 3 days of 3mgs and the rest 4 mgs as per the dead slow stop method.

I have seen Dr Hughes ( at St Peters Chertsey) and also via telephone and emails if had concerns and he also said that if I had to stay on 5 mgs( what I was on at the time of our conversation) for the rest of my life it wouldn't be the end of the world.

I actually feel now that the PMR may have finally gone.

It's early days but never managed to stay at 4 mgs before symptoms set in again where as now been on 4 for a good few months with no issues.

My main issue now is still the overwhelming fatigue.

I have had an early morning cortisol test which came back at 57nmols/L and prior to that 48 nmols/L up in London in March.

It was 480 nmols/L at the time I started pred as I say 10 years in December

That explains the fatigue.

I am having it reviewed now to see if it comes up further now I am reducing and also since I finally stopped having to live off high dose steroids due to uncontrolled asthma which has amazingly improved since started receiving biological therapy for it!

Best of luck getting sorted!

[k-mac in reply to pmrdec112014]

Thank you - you too.Sounds like you had similar advice from Dr Rod. and a similar PMR experience. I'm going to restart a 4/3.5 reduction and see if any more pain returns...

[Bramble2000]

Hi, I had a pet/ct scan to rule out everything because my rheumatologist refused (and still does) to believe I have PMR due to my age, I’m 53 now, PMR started at 50. The NHS don’t use pet/ct routinely to diagnose PMR. When I got the results the PMR was clear. X

[k-mac in reply to Bramble2000]

I've been offered a hip x ray. Hooray!It took me a while to get a diagnosis at 61 as my doc thought I was too young then. Then told it would be gone in 18 months! Does this mean your Rheumatologist won't authorise Pred? xk

[Bramble2000 in reply to k-mac]

He said I can take Pred bit really struggle with the side effects. He’s sending me for cancer tests. He seems determined to find something other than PMR 🙄

[k-mac in reply to Bramble2000]

I do hope they get to the bottom of what's causing your unwellness and that the tests come back negative. I felt bonkers on the 40 - 60 mgs of Pred for GCA and developed a moon face and a moustache but felt great around 15mgs...too great really and wasn't warned not to start undertaking massive decorating jobs at all hours!Nothing ever said about the importance of rest etc Look after yourself x