PMR in remission now diagnosed with GCA to be confirmed.

[Suffolklady]

Sorry I don’t write on here very often but I do keep up to date with the latest post so here’s what happened to me today. I feel a bit lost at the moment.

I’ve had PMR since 2016 starting on 15mg of prednisolone and eventually got stuck on 5mg with no PMR pain but a compromised adrenal gland function. It was decided a year ago with the help of my Endocrinologist to change from 5mg Pred to 20mg of hydrocortisone. Can’t say I felt any better on it I hoped I would but I didn’t but I stuck with it. Anyway moving on to a few weeks ago and I started to get headaches (nothing new there as I have problems with worn discs in my neck and occipital pain and neuralgia) but these were different from the norm. Firstly the pain was across the front of my brow like eye strain every day. Then a week ago more severe headaches to the left side of my head in the temple area down my neck and my scalp was very sore and tender. I had several days in bed but I couldn’t shift the pain even with strong medication. Very hard to say what I thought it might be as I do have lots of pain all over my body due to skeletal issues and it was just another one added to the pot. This morning I decided to see my GP and she sent me straight to my local hospital. She wasn’t 100% sure if it might be GCA due to my history of PMR but wanted to be on the safe side. Long story short after bloods were taken no raised ESR, once again, and after an examination the consultant seemed certain it was most lightly GCA. He prescribed 60 mg of prednisolone taken before I left the hospital and I have a trip back again tomorrow morning at 9am in the hope that a Rheumatologist would be free to come and see me with a view to having a scan of the temporal artery.

Tonight now resting I don’t know how I feel. I certainly do not feel like I thought I would do having such a big boost of steroid. My upper arm pains are probably not as bad as they were before the dose of Pred other aches and pains about the same and my head is still a little sore but maybe not so headachy. Temple still tender. I certainly feel a bit spaced out even dizzy tonight. The sweats have started too. I’m not sure what I am supposed to feel pain wise other than a little shocked at today’s findings.

[Angelsmummy]

DEFINATELY sounds like GCA,glad you got a “ possible”diagnosis !Pretty sure once I was admitted to hospital with my GCA and had oral steroids and put on a drip,I felt nothing,practically every symptom went!Such a relief!Glad you are seeing a Rheumy today.Hopefully your eyes are ok!Wishing you the very best of luck and hope everything goes ok for you.From another Suffolk lady!xxx🤞🏼🌼🌼😜

[Zebedee44]

What a blow for you, and I hope you get the help you need from the doctors treating you. My own journey with PMR began in 2016 and I would be devastated if GCA came along at this stage and I had to increase the pred so much.

My thoughts and best wishes are with you xx

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this, but both GP and A&E consultant have done exactly the right thing.

Hopefully, when you have seen Rheumy he may reduce your dose, but maybe not until the headaches have resolved, and nor should he really. That may take time - it took 2 weeks at 80mg for mine to clear…as yours has been treated much more quickly, hopefully relief will be quicker too.

60mg can make you feel spaced out, but it is correct procedure and although I can fully appreciate your feeling of shock, you have to tell yourself it is preserving your sight. That is the most important thing.

Please keep us updated, and best wishes.🌸

[PMRpro Ambassador]

Hard luck, it is always a downer when things go backwards rather than forwards. So glad you have an "on the safe side" GP and ED consultant because that is the best approach really.

Do let us know what the rheumy consultant says.

[Suffolklady]

Thank you for all your responses. After a very long day at the hospital yesterday the outcome is better than I could have hoped for. I eventually saw the Consultant and had a temporal artery scan she could see clearly the arteries were not showing any signs of ‘halos’ as she said would appear if it was GCA and was happy I hadn’t got it. However she did seem to think with the symptoms of stiff hands, painful upper arms, hip discomfort, shoulders neck and head soreness and headaches showed signs PMR had returned and are given the regime of two weeks on 15mg Pred 2 weeks on 12.5, 2 weeks on 10 and 2 weeks on 5mg. Been there and done that before it’s easier said than done. I feel like I’ve gone full circle and I’m back to square one but it can’t be helped it is what it is. I only had the symptoms of arm pain and stiffness in 2016 all I have now I didn’t recognise as I have always had spinal problems in the past and put every pain I had down to the quirks of this. As for the headaches I’ve been suffering from she thinks it could be to do with the sinuses so await a scan in due course. I have to be aware of anything to do with change of sight and get straight back to them at any point. I’m hoping the headaches are to do with PMR and the steroids will help. I will have to be even more careful with diet now it’s hard to not keep putting it on. Relief on the results but gutted at the same time.

[PMRpro Ambassador in reply to Suffolklady]

Just thinking - you have been on HC for year and I do wonder if the HC was scooping enough inflammation out of the bucket to make it take far longer for it to build up far enough to cause symptoms than if you hadn't been - i,e, the PMR never really was entirely gone but only a tiny dose would have been enough to keep it under wraps.

[Suffolklady in reply to PMRpro]

Yes absolutely I felt maybe it would have been right to go back to the prednisolone although I think maybe I felt better and more normal with that not so many side effects, but the endocrinologist said that the hydrocortisone was only a maintenance dose for adrenals to stick with it. Thinking back my arm pain that I originally had never manifested itself again until six maybe eight months ago whilst on the Hydrocortisone so I think you are absolutely right. My physio tried to disperse the pain to no avail so I think it was a sign. That was the first sign had, my upper arms, the first time around. I am not sure how this reduction will go whether I will be dependent on it again having to graduate down like I did the first time or as it’s a big hit I can get down to 5 comfortably within the timeframe the hospital have told me. Maybe you have some thoughts on that. Reading the information that I got yesterday they are saying that on the last two weeks of the regime to get down to 4mg Pred but I have never been comfortably down to this level. I was having 20 mg of hydrocortisone which was the equivalent of five Pred.

[PMRpro Ambassador in reply to Suffolklady]

It can be a nightmare if endocrinology get involved without a close relationship with the rheumy because hey only see their side of the fence and aren't interested in the rheumatology side.

Quite a few people find pred easier to tolerate than HC and it is approved for management of adrenal insufficiency. Of course, when they think they can get the adrenals to wake up, they will insist on the HC as it is out of the body faster to stimulate the adrenals at night.

[Suffolklady in reply to PMRpro]

In my case the Endocrinologist has stuck with me through thick and thin unlike Rheumatologists came and went go too often then no appointments for two years over Covid if I hadn’t had him I’d have been in the soup! Of course PMR isn't his field but he did to be fair realising there was no support so helped the best he could. It was my decision to try H/C not his as I felt pretty rubbish on pred and symptom’s of PMR all but went just needed adrenal support. Very debatable if they will come back but my journey isn’t over yet

[PMRpro Ambassador in reply to Suffolklady]

That's great - but sometimes they don't really understand the rheumy side of the problems but then, so often, neither do the rheumies when it comes to PMR!!!!

[DorsetLady PMRGCAuk volunteer in reply to Suffolklady]

Please do monitor headaches in particular- just because temporal artery doesn’t show any issues, doesn’t automatically mean all head arteries are clear of GCA - sorry.

She may correct about headaches related to sinuses, hope she is… and as we know many things can cause them… but the key may be where your headaches are. So if they continue maybe keep notes of where they are, what sort they are [acute, minor, low level, after specific activity etc] and what, if anything helps.

Not wishing to spread doom and gloom.. just being mindful.

[Suffolklady in reply to DorsetLady]

No not at all I was convinced that maybe there was something more going on in my head. I do have occipital pain at the back of my head/ neck this causes is a lot of head pain and I can feel the swelling off the muscles when it is aggravated by movement of my left arm. Because of this never quite sure what causes the headaches. The last month I had unusual forehead tension pain between the eyes that’s why they think it could be the sinuses but was also having pains in my eye socket which again is most likely to do with the occipital pain but not conclusive also down the left side of my face and my temple. The GP obviously was worried about this being something more but it was good to get it checked out. I will of course monitor everything from this day and I do keep a diary.

[Fatsiajaponica]

I don't know, sometimes it is just too much! You are on it though and will get through it of course. Thought I was doing well and then it all went pear shaped and up to 60mgs so know something of the disappointment. We will survive. Sending hugs💐

[Suffolklady in reply to Fatsiajaponica]

Yes suppose we will get through it. Only took 60mg at the hospital on the Thursday as a precaution until yesterday when I got the all clear of GCA. It did make me feel strange and woozy. If this was only the medical problem I had to contend with I would except it better it’s just another thing to go wrong but as you say we will survive with a bit of effort. Thank you and sending hugs back hope you get on okay 🌸