Flare up...again! Advice please, am I doing the right thing?

[Lyndab62]

Hi all. I'm a regular reader of posts and find this site massively helpful.

Diagnosed December 2016. Age 56. Down to 6/5.5mg. hip pain was starting again through January. Also thighs and buttocks hurting. At its worst unable to walk upstairs, or even on the flat very far. Felt this was a flare up starting, 3rd one in last 8 months, always hips affected, seen Gp previously and increased pred each time. This time GP referred me to physio... I'd asked about steroid injections in the hips. The very gentle exercises I was given for my already inflamed hips/muscles were enough to tip into a big flare up. I'll inform physio today. I decided to increase to 10mg, 4th day today. Legs feeling better, not fully pain free and generally a bit unwell. I'm working full time, taking this week off sick to try and get settled before going back to demanding job.

Question for you helpful people...how many days can I stay on 10mg before returning to the old dose? I'll drop to 6mg rather than 5.5 mg when I do drop? Should I go in stages?

Thank you

Lynda

[Hidden]

Hi Lyndab

This all sounds very familiar to me lm afraid 😟

I have an appointment in 10mins so don’t have much time, please ring for an appointment with your GP - do you see a Rheumatologist? You really need to get some bloods done to see what your CRP is like & if that could be done before you see your GP so he the results. I would also be taking a couple of weeks off until you settle.

I will reply more later but just thought you could get the ball rolling.

MrsN

[Hidden in reply to Hidden]

My kitchen Man is running late!

If this is a Flare & it very much sounds like one, dropping back by 4mg after a week will possibly aggravate it further.

I think seeing your GP getting a realistic plan to reduce AFTER you feel an Improvement at 10mg (or higher if that’s what GP thinks) plus some time off work maybe your best way forward.

Very Best Wishes

MrsN

[Lyndab62 in reply to Hidden]

Thanks MrsNails. My CRP has never been high, even when first diagnosed...i must be one of the 20%

I don't see a rheumatologist and did wonder about asking for a referral. Tbh I don't always have a lot of confidence in GPs advice. When I saw this GP 2 weeks ago with hip pain and inflammation, not walking properly, and she referred me to physio, I was a bit flummoxed. No discussion about what dose I'm on, how to manage, etc. I'd rather have a "consultation" with the experts here!

[SnazzyD]

Hello, I wish I could write this in tiny letters, but perhaps it may become necessary to cut down your work? Perhaps the repeated flares over the last 3 years are indicative that your body needs a bit of help, Pred aside. I gave up a career I loved at 54 to make sure I got better, so I know that it’s a hard thing to do.

[Lyndab62 in reply to SnazzyD]

It's something that's always on of my mind...work! And how to manage. I can't really cut back yet as I'm on my own, still paying mortgage etc. Might have to bite the bullet at some point though and go to 3 days. They won't allow 4 days a week working now.

Did you stop altogether? Was work not manageable along with PMR?

[SnazzyD in reply to Lyndab62]

I did, though not at first. Firstly I had GCA and not PMR though the ‘rules’ are similar but the dose is higher to start. The side effects rendered me incapable and my muscles became horribly weak. At first I believed the docs’ view that all would be done and dusted in 18 months and that by 15mg I’d be feeling great. On day 2 I found this site; great but oh dear, back to the drawing board. I thought I would be back to work on a go slow in 4 months when I’d be on 5mg. However, I somehow knew that I would not ever be able to get back to my former capability in work and the grieving started. Fast forward, 5mg took 18 months with no flares but I came close whenever I over did it. This was a wake up call and I decided that I ought to give up if I wanted to avoid serious complications due to ongoing inflammation and to me, going back up to high doses was non-negotiable. Still not quite believing it I decided that I would have to give myself a year, though my little voice said “no way”. I told work I’d be back after the year probably but the next surprise was adrenal insufficiency once I was going below 7mg. I handed in my notice as it was quite clear this was debateably worse than even the early days and was going to take a long time. I’m now nearly 2 years in. The final nail in the coffin of my career will be when my nurse registration expires this time next year.

Losing my salary was very noticeable but I’m lucky my husband can provide. Your situation is more difficult, however if it were me, I’d be trying to research options now so IF you do reach the point where you have to give up you’re ready. Be careful of convincing yourself there are no options so you thrash your body and it eventually gives up in a less convenient way.

[Lyndab62 in reply to SnazzyD]

Thank goodness I found this site early on too.

So sorry to hear about your work situation. Must be very hard to think your career has ended in this way. Hope that won't be my situation. My job involves sitting a lot, desk work (though I wander about a lot) but also out and about driving and visiting clients. The pressure to always take on more cases is the most difficult part of the job.

Thanks for the advice...food for thought

[SnazzyD in reply to Lyndab62]

And it is just food for thought, not advice to press the nuclear button just because I did. The rambling post was to try to illustrate that it wasn’t a case of diagnosis=stop work but two processes at the same time, trying to carry on and trying to be realistic.

[Daisychain12 in reply to SnazzyD]

What a wonderful post xxxx

[PMRpro Ambassador]

That all sounds more like trochanteric bursitis (TB) than "just" PMR. TB can be part of PMR as well as being a separate entity. If it is part of the PMR then it is possibly "fed" by the autoimmune disorder - so physio and exercises will make it worse until the source of the inflammation is "cleared out".

Although there is a lot of merit in Snazzy's suggestion - there is another consideration (or two): 1) are you trying to reduce too aggressively, allowing flares to develop rather than accepting that, in order to continue working, you may need a bit more pred and 2) have you maybe got a form of PMR that does keep flaring? Which comes to the same thing - more pred required. BUT - I suspect a good start might be steroid injections for the bursitis.

[Lyndab62 in reply to PMRpro]

Hi PMRpro, further update, please can you advise, I'm still struggling. After 6 days on 10mg things not settled. Hips not feeling inflamed as such but I still can't walk easily or go upstairs, legs feel weak and still sore but 70% ish better than before this flare. I rang physio and told her what's what, she said having seen me she thinks it isn't my bursae that are inflamed, and she'll see me again when things are settled to do "rehab " for my hip area.

I managed to get an appointment with GP yesterday, he's more specialist in muscular problems, so i felt he knew his stuff. At least he listened and discussed things with me and agreed it's not straightforward. Having pushed and pulled legs, he also was sure it isn't bursitis. Regards dosage, he said its fine to take the 10 mg for up to 2 weeks then reduce to 7.5 mg and go down slow as usual. I told him I've been doing .5mg a month.

I have a couple of questions -

- Can I take the increase to 10 mg for up to 2 weeks and then drop to 7.5? I thought up to 7 days was ok to then drop.

- Also, should I try 12mg and see if this helps?

Today will be day 7 of increased dose, which I'll take soon.

Thank you so much for any advice. I'm feeling anxious and worried. I'm going to stay off work another week, or at least until I feel good.

[PMRpro Ambassador in reply to Lyndab62]

10 down to 7.5 should be OK after 2 weeks yes, in the past I have done 10 to 5 after 2 weeks. Not much you can do if they disagree over bursitis but PMT-type bursitis isn't quite like ordinary bursitis (whatever they think). My hip pain wasn't labelled bursitis at the start - but it took a higher dose for longer to get the PMR hip pain to fade. They are the ones who complain about us taking too much oral pred!

You could try a bit more - but I can't advise you to do that...

[Lyndab62 in reply to PMRpro]

That's all great advice, thanks. I don't know how they decide if it is or isn't bursitis. As I didn't shout in pain when having legs prodded and pulled, that seemed to be the answer. At least I'm in with physio now and will continue to ask more about steroid injections and bursitis. Very wary of doing any "rehab" though.

I'll stay on 10 (or a tad more for a day or two 😉) until it's settled. You're right, he was concerned about how much pred I'm taking (though I've been on lower doses for some time apart from the flares) and he said the oft quoted "it should be settling after 2 years" and I got the alendronic acid talk. My dexa results from 2 years ago were v good and I'd like another, but I'm being told no at the moment.

Thanks again!! I'd be lost without your advice

[PMRpro Ambassador in reply to Lyndab62]

B*££*"$% - 2 years is a myth for 2/3 of patients...

And no dexascan, no AA would be my line!

[Gary1310 in reply to Lyndab62]

My Rheumatologist at Marshfield Clinic, Wi., started me on 20 mg for 4 months then to taper 1mg., every two weeks. I seem to be doing well. I rest a lot, naps are almost a necessity. There seems to be a day or two of

minor twinges in arms and back but not bad. My legs are wobbly. I have cut down on social stuff, say NO a lot. Have learned to pace myself. My life is not exciting anymore...but simple things give me pleasure...I have come love my quiet life.

[Lyndab62 in reply to PMRpro]

Hi and sorry to ask for your advice again. I'm not getting on top of this flare and not sure what to do. I'd been on on 5.5 mg then went up to 10mg for 6 days, then 12mg for 2 days and felt better. Down to 10 mg for last 2 days and today have felt rotten again. Been putting frozen peas on hips which has helped a lot and though still tender not burning much now. But my thigh muscles and buttocks are hurting a lot. In bed now and can't sleep or get comfortable. I'm 10 days in now of increasing and don't know what to do. I'm thinking 12mg again or more for 2 days? Back to 10mg for 2 days then 7.5 and hope my body can deal with all the extra pred for 14 days before going back down. Thanks so much.

[PMRpro Ambassador in reply to Lyndab62]

You need more - that is what your body is telling you. It sounds as if you may have trochanteric bursitis whatever the clinical exam says - at present mine certainly hurts in the right places but only gets uncomfortable when I have walked a lot. A doctor could examine me with nothing obvious being found.

Is there no chance of a different doctor? One who treats his patients, not the textbook (which is wrong...)

[Lyndab62 in reply to PMRpro]

I'll try a different GP...there's a lot in the practice and I'm slowly making my way through them all! I've a physio appointment in 2 weeks and I'll quietly insist (again) that she considers bursitis. I was referred with PMR hip pain and the exercises she recommended caused this flare (though it was brewing to be fair), 2 weeks off work and an increase in pred. I don't know why they insist it isn't bursitis, I really don't.

Things are much more settled today, a pain free day, yay.

Thank you once again. Lynda

[Lyndab62]

Thank you, much appreciate your reply. I did ask GP if I should have steroid injections; the 3/4 minutes spent discussing my hips ended with her stating firmly a referral to physio was the outcome. No discussion about pred dose.

I wonder if I dare show this to GP and/or physio...

[JulieR2 in reply to Lyndab62]

Hi there I wrote earlier this week about a bursitis diagnosis and have been taking brufen 400mgs three times a day! I am a new woman. I too went to physio yesterday and was given very gentle exercises to actually stretch the tendons. Basically knee hugs side lifts and back lifts and another sitting exercise. I think I have been suffering for 3 months thinking it was a flare. Can you lie on your side at night? I couldn’t tolerate this and my side felt as sore as a boil! Took me a while to distinguish this and what I had previously. It may not be the same so just sharing my experience. I am 53 and work full time.

[Lyndab62]

That's useful, hearing your similar story. It feels like my "flare" has been managed this last 4 days in that my leg muscles feel much less sore. Hip pain is still there but it comes and goes, hour by hour. Like you say it's trying to work out what pain is what.

I'm sleeping ok, half on my side and half on my back with a pillow behind.

Thank you!