Yet Another Hurdle !! Another flare-up , let's hope the Depo- Medrone 150mg injection works.?

[trish29]

Here we go again , I thought I was doing well in my steroid reduction. I thought I was just coping with the pain in my Spine ,legs and hands , utter exhaustion , no energy to go out on my scooter. I've just wanted to be left alone and go to bed . Very snappy with my partner and very tearful.. I should have seen the signs but told myself that YOU CAN COPE . Well last Saturday I had a bad flare- up awake most of the night and migraine heads, aching jaw and teeth on edge .Pain in the spine more painful than usual and then severe pain in my left Buttock going right down the left leg to the calf. I have had 9 years of this up and down Rollercoaster. I got down from 16.05 mg to 13-00 mg but have just seen a GP today and gone back up to 14mg steroid for this week as well as having a 150mg DepoMedrone injection ( prescribed by my Rheumatologist ) . Let's hope I get some relief , the spine seems a bit easier already .. This is a never ending journey and I keep reading Kate Gilberts e-book to see what I am doing wrong , as my GP told me this morning , We Are all individual and your body is doing what it wants to do. No blood tests were done as I was in an emergency clinic , but I did get the Injection. I have an appointment next week with my normal GP so let's hope I can get some new tests done. Good luck to all you sufferers who have got completely off of Steroids or on a very low dose ( I wish ) . Will This PMR EVER GO AWAY !! Best wishes trish29

[PMRpro Ambassador]

I would say you may well have something more than "just" PMR. There is a syndrome called myofascial pain syndrome that is often found alongside PMR (so I was told by a German orthopaedic specialist who has done research in it). As long as you are at a higher dose of pred it is also at least partially controlled - as you reduce it starts to flare again too. It requires its own more targeted treatment - either cortisone injections in the specific trigger points which are foci of cytokines and lead to referred pain or manual mobilisation techniques can be used. I have struggled with reductions until this was dealt with - now am down to 5mg for the first time in nearly 5 years (I've had PMR for 10 years altogether, not recognised and not treated at first).

[trish29 in reply to PMRpro]

Thank you PMRpro. I have asked several medical people why am I getting teeth on edge and partial pain down my Jaw especially when I get to 13.05 mg or just below , But I never get any answers. I keep enquiring about GCA because I get a lot of migraine ( at times ) I've just had 3 days of it with this last Flare- up. I also believe I need tests to see how the Adrenals are doing after reading a very good article in last weeks Woman's Weekly .. I will make a note of what you have said and show it to my GP next week when I hope to be feeling better. I do believe we would be so lost for knowledge of PMR without this Forum. Thank you once again as you have given me a bit of hope as while I feel so ill at times I also feel that I am banging my head against a brick Wall Trish 29

[trish29 in reply to PMRpro]

Hi Again PMRpro.. Are there tests for Myofascial Pain Syndrome? I have even told my Rheumatologist about this and never got any answers .. Mmm very interesting . So pleased you have managed to get to 5 mg .It gives me hope . trish29

[PMRpro Ambassador in reply to trish29]

Within established UK medicine it is a fairly newish concept - but the Germans have recognised the problem for a long time and offer options to deal with it! But they tend not to publish in English and even when they do - the Brits don't read it!

There are specific trigger spots of these concentrations of inflammatory cytokines which can be felt as "knots" in the muscle. In the back there are points on both sides of the spine: a pair about the "dimple" area at pelvic level on your bum, alongside the spine about half way up and in the muscles across your shoulders. The lowest ones can cause sciatica by pinching the nerve or seem like sacroiliitis, the ones in the shoulders can refer pain into the arm and up the neck and the middle ones can cause pain into the ribs.

Here the pain clinic works on them using injections and mobilisation, physios use manual mobilisation. I found Bowen technique also worked really well and I think it is worth trying if you can afford it - it isn't cheap but I found it as good as a massage anyway!! I don't have any affiliations by the way - but I think it is brilliant and so do a few others who've tried it!

I'm a bit sceptical about the "tests for adrenal function" - whilst you are taking pred it suppresses the adrenal set-up (it is very complex, not just the glands themselves) and your body won't produce cortisol because the blood level is high enough. The body doesn't care whether it is natural corticosteroid or a tablet and at 13mg you have plenty for the body to function - it needs about 8 or 9mg to function OK. The side effects from pred are from the excess. But a dose of 8mg is not really enough to suppress inflammation if it is severe - hence the much higher doses used in illness. The "adrenal tests" are often done by doctors too - but when you are approaching a dose that is well under 10mg when you might start to have problems because of not enough corticosteroid. What your adrenals won't do on a higher dose is respond to stress in the normal way and make more (fight or flight reaction) - which is why you need to avoid it where possible and if not you might need a bit higher dose if you are having an operation or have had an accident - not always though.

[lyndyloo2]

Sorry to hear that you're dealing with all this extra pain. I too was diagnosed with myofascial pain syndrome; but mine developed some 12 years before PMR GCA.

My GP referred me to a Consultant pain management, who advised me on treatment and therapies.

The one thing I find that helps most are structured relaxation techniques, I know it's very hard to do this when you're in pain.. But, it helps me.

Please try not to think that you are doing something wrong, this is a serious auto immune disease that needs careful management.

Hope you find some answers and pain relief soon.

[Hidden]

Hi Trish29,

Sorry to hear you are having such a hard time again.

I don't know if it will be any help but came across this article recently. If you google

Utility of FDG-PET CT Scanning in a Rheumatology Service; Indications, Results and Influences on Management decisions.

Basically the gist of it is that in some rheumatological conditions that don't respond as normal there may be some other disease process happening and CT- PET can identify this. I know someone else posted recently that CT-PET had helped them get a definitive diagnosis when they were told they were too young for PMR.

I hope the steroid injection has eased things for you and you manage to find some answers soon.

Best wishes

Keyes

[trish29 in reply to Hidden]

Thank you Keyes. for this information .and Thank you also to PMRpro , Lyndyloo2 and Celtic for caring enough to reply to me. I will try and get some answers next week when I see my GP. Wishing you all pain free days. trish 29

[trish29 in reply to Hidden]

Good Morning Keyes.. Thank you for reassuring me last night that I could take Solpadol and Ibuprofen together. I only took a small dose but managed to get a good nights sleep with no drawbacks. My pain level is fairly high this morning but I haven't taken my steroids yet. I do believe that I feel a bit better.. Its a week tonight that I had my bad Flare so maybe I am turning the corner .. Let's hope so. Thanks and I hope you have a good Day. Trish 29x

[Predfan]

I just wanted yo express my concern for you. I don't have any suggestions, per se, but my heart goes out to you. It does sound like you may have something else going on in addition to PMR.

[trish29 in reply to Predfan]

Thank you for your kindness Predfan.. In all the years I felt that there was also something else in with the PMR but never no answers.. I have had another awful day today and I have been very exhausted and tearful with it . I feel so sorry for my partner who feels he isn't doing enough to help me.. Its such a horrible condition and all I want at the moment is rest. I hope to keep going until Monday when my GP is back and hopefully ask to get some tests done. You would think that after 9 years I would know all the answers but that is not the case and I am still learning from this wonderful Forum. I hope you are doing OK? Beast Wishes trish29