Steroid withdrawal , miss diagnosis or what .

[Gaz227]

Hi Al . I have been successfully reducing for some time now start d on 20mg pred June 2015, currently down to 5.5 mg of pred , the rhuemy wanted me to go in Azatheprine but as I was reducing ok I couldn't see the point , 3 weeks after using the dead slow system from 6 to 5.5 , I am in so much pain, feel as bad in my hips as the day I was diagnosed , the only rest bite I get is taking a Arcoxia 60mg tablet , that gives me 2 days pain free then it's back again . When the pain was at its worst I went and got a blood test EST and CRP won't get the results till I see the Rhuemy in 10days time , my question is if the blood tests show no raised inflammation levels what does it mean , steroid reduction pain , the pred is to low to control the disease , or a miss diagnosis in the first place , I am so confused with this and the Info I have received from the Rhuemy which is 10 minutes every 9 months is a waste of time , all they want is get off the pred as fast as possible . Just trying to decide what is the best cause of action , increase the pred,. Ride out the pain ( which makes me miserable ) or keep taking the Arcoxia ? . Any suggestions or similar experiences all.

[polkadotcom]

It would seem that while 6mg was your baseline, 5,5mg wasn't. And as you say that this is some weeks later, just as I have suggested for someone else, 6mg put out the fire, 5.5mg let the hotspots burn through.

However, if you are getting relief with Arcoxia, then it may not be PMR at all as it doesn't usually respond to anti-inflammatories.

[Gaz227 in reply to polkadotcom]

Thanks polkadot, with the relief I get from arcoxia , my mind is always wondering about the PMR diagnosis in the first place , but my symptoms where classic PMR . Time will tell , I plan I see the Rhuemy with all guns blazing this time . 🙀

[PMRpro Ambassador]

What you are looking for is the lowest dose that manages the inflammation - and you have passed that. 6mg worked, 5.5mg is too low and has allowed inflammation to build up again over the 3 weeks.

Since you suggest Arcoxia is managing hip pain - I wonder if it is actually bursitis that is causing that, it would respond to some extent to the Arcoxia, other PMR pain doesn't usually but you don't mention that.

However, if your rheumy is only interested in getting you off the pred after barely over a year - he is, I would humbly suggest, in cloud cuckoo land! Only about 25% of patients with PMR get off pred in under 2 years - and they are at a higher risk of a relapse later. About half take up to 4 to 6 years. As long as the underlying autoimmune cause of the PMR symptoms is active you will need some pred. 6mg is a low dose (as far as most doctors are concerned) and not one to worry about for the next couple of years at least (in the last 7 years of my 12 year PMR journey I've only been down to 5mg for about 18 months, my doctor isn't worried I currently need 10mg).

Any chance of another opinion? Where are you?

[Gaz227 in reply to PMRpro]

Thanks pmrpro another very logical reply , I am in Birmingham UK , I do have a certain level of osteoarthritis in my hips and back , but this pain also hits my thigh and glute muscles . The Rhuemy's under study was going to inject me for bursitis last year but the main man said as the pain wasn't in a specific place on my hip it probably wasn't that so he stopped the presidure . My hips have always been the main problem that is what took me to the doctors in the first place . Think I will continue on 5.5 till I have spoken to the Rhuemy then take it from there depending on his opinion . If you can think of any thing I can fire at him during the meeting that might get answers would be very interested . 👍

[PMRpro Ambassador in reply to Gaz227]

Where is the pain? If it is in the groin and down (as much as) the entire outside of your thigh it could well be trochanteric bursitis and his junior obviously suspected that. It wouldn't have hurt to try. Myofascial pain syndrome will also lead to that sort of area pain. If you have thigh and gluteal muscle pain - piriformis syndrome should be considered as well.

All 3 can appear as add-ons in PMR. I was told by an orthopod that I had degenerative/wear and tear problems in my lower back that were what caused the pain I had - there may be, but the majority of my back pain was due to myofascial pain syndrome which was causing spasmed muscles all over my back - it was as hard as floorboards. Sorting that sorted out the low back pain and the shoulder pain - and the leg pain.

It's all very well staying at 5,5mg - but if what you need is 6mg you will just let the flare progress and end up in more pain and needing (possibly) more pred to get it under control. There is no virtue in taking too low a dose - you have all the downsides with no benefits to balance them out.

[Gaz227 in reply to PMRpro]

my pain is in the side's of my upper thigh and glute area also general stiffness , the crazy thing is when i exercise the pain goes away but comes back to haunt me after i have slept, i try to stretch a lot but it is so painful for the first 10 or 15 minutes that it grinds you down, i was holding out to see if there was any inflammation present if not surely it means it wasn't pmr in the first place in which case i need to get off pred as soon as possible even if it means going through a painful with-drawl process, its the old question again why have i got the pain in my hips, if the experts don't know what chance have i got. they aren't going to pay out for another MRI scan, the joys of being in the masses i suppose, but discussing with knowledgeable people really helps keep me sane , thank you .

[Hidden in reply to Gaz227]

Hi,

It's very interesting that you say the pain goes with exercise and is worse after sleep etc. I presented with bilateral hip and shoulder pain, weight loss, anaemia etc. Pred helped my pain but it didn't go completely. To cut a long story short I now have a diagnosis of Ankylosing Spondylitis ( AS )and Behcets syndrome.

AS can present with Polymyalgic symptoms, it responds to pred ( although pred isn't used to treat it ), women often don't get the classic lower back pain with it, it typically responds to exercise and worsens after sleep or inactivity and also very much responds to arcoxia.

Runrig who posts on here is being assessed for it soon as well.

Of course I am not saying that's what you have but I wonder if you do need further investigation to rule it and things like bursitis etc out.

[Gaz227 in reply to Hidden]

Thanks Keyes will investigate what you have posted 👍😀

[piglette]

Whatever you do, do not try and ride out the pain of PMR it is a waste of time, once the PMR has raised its ugly head you will need to get your dose increased to bang it on the head. If you try and ride through it you may as well not bother to take the steroids as you are not getting relief from them and you are liable to the side effects

[Gaz227]

I took piglette's advice and took an extra Mg yesterday pain was gone by the evening , does that mean I am at my own bodies manageable level , or would that have happened with anyone increasing the pred ? Also how long should I continue with the extra Mg before I try to reduce again . ? Thanks for your help folks , this site is priceless 👍👍👍😀

[PMRpro Ambassador in reply to Gaz227]

IF it is PMR I'd say that is showing you are at the initial target: the lowest dose that manages the symptoms.

Although Keyes suggestion definitely does need to be investigated, I had 5 years of PMR without pred and during that 5 years I developed quite a few strategies to make life marginally better. I was never out of pain really unless I did no walking or stairs or anything with my hands because that aggravated the tendonitis/synovitis/bursitis that I had a lot of. But once I could get warm and moving gently in the morning the muscular pain did improve - the days I had an early morning aquaaerobics class in a warm pool followed by a spell in the steam room and then Pilates I felt almost normal! If I was cooled down it was worse - and those facts suggest that once you can get the circulation going a bit the PMR does also improve. The pred achieves that in the microcirculation in the muscles by reducing the inflammation that narrows the diameter of the blood vessels. In the pre-pred days I would go to bed feeling pretty much OK and wake immobile the next morning to start the process all over again. The rheumy who didn't want it to be PMR did include AS but decided he'd ruled it out by the way.

Really all something to discuss with your medical team without being fobbed off.

[Gaz227 in reply to PMRpro]

Thanks , I guess if we keep searching and stay positive it will all work out in the end , 6 staying on 6 mg till I see the Rhuemy will let you know the outcome 👍😀