Hi Everyone....

[funnylee]

I'm new here but was diagnosed with PMR in May 2017 when I was 50. Once diagnosed I started on 20mg prednisolone reducing to 15 and 12.5 over the next 4 weeks. This had an amazing effect on my symptoms (shoulders, hips and lower back) and gave much relief. I have been reducing 1mg a month since then and all has been going very well with just minor bearable aches/pains. However, about 2 weeks ago I was down to 3 mg and pleased I was now on a lower risk dose heading in the right direction when I started getting my old symptoms back. I initially went back up to 4mg as the consultant had advised I should, but my symptoms were not improving. I was also getting a tightness in my jaw and a headache (though not at my temples). I saw my GP who confirmed my CRP level was raised and agreed to just raise my doseage a little more to 5mg at this stage. This has helped, but not sure if I should still be concerned about GCA? I did have these exact symptoms before and the consultant ruled out GCA saying my headache would be far more severe and across my temples rather than the back of my head. i did have a tender scalp though.

Sorry for the lengthy summary but was hoping some of you guys may recognise these symptoms and what actions you took, especially regarding GCA. Is the headache much worse with GCA? Is this just a relapse and to be expected?

I've not experienced any vision issues, but I'm paranoid that each twich or pain around my eyes is not a good sign.

I'm glad I've found this forum, it's good to know that there's others out there who understand what PMR is all about.

Thanks for listening.

[SheffieldJane]

I have PMR, diagnosed March 2016. Attempting to taper down to 6 mgs from 7mgs. My start dose was 20 mgs and my reduction faltered at 10 mgs where I paused. My first thoughts on reading your story, apart from welcoming ones are that you have reduced so quickly. I would have been unable to do that without a full blown flare of symptoms, which maybe is what you are experiencing now. You may need a little more than 1 or 2 mgs to get this under control.

I hope one of our experienced, knowledgeable contributors responds to you about the presentation of GCA. In your boots I would still be worried too.

Well done to the doctor for spotting PMR, you are very much a youngster statistically but not alone on this forum.

[PMRpro Ambassador]

Oh dear - I sometimes wonder what textbooks some rheumies read...

The headache of GCA is not always a presenting feature anyway - but an area that GCA "likes" to affect is the occipital region, at the back of your head.

emedicine.medscape.com/arti...

gives an excellent list of symptoms - together with an indication of how often some are presenting features. Headache is only present in 72% of patients!

So yes, I'm sorry but GCA MUST be a consideration here and you need to see a different consultant who knows how sneaky GCA can be. Where in the UK are you?

[funnylee in reply to PMRpro]

Thanks for the link, a scary read! I am in Essex by the way.

[PMRpro Ambassador in reply to funnylee]

Under which hospital? In Essex I'd say there was only one for GCA - Southend. The others are awful - we've heard of other people's experiences and THEY are scary!

[funnylee in reply to PMRpro]

I saw a consultant from Colchester hospital. He diagnosed my PMR immediately and seemed quite thorough, but didnt think I had GCA. My CRP's were 39 (up to 36 again now), which is not that high relatively speaking.

Whats the name of the consultant in Southend?

[PMRpro Ambassador in reply to funnylee]

Professor Dasgupta and his team. He is patron of the PMRGCAuk charity and has probably done more for GCA in the UK than most.

[funnylee in reply to PMRpro]

Thanks, I did find a few posts and articles about him last night. Sounds like he is definitely the man to speak to, I imagine he's really busy. One of the articles I read said 13500 people are diagnosed with GCA every year, I was astounded!

[PMRpro Ambassador in reply to funnylee]

He doesn't see them all! Of those about 20% expereince some degree of visual loss - and that was why he has done so much work to get the fast-track clinics going.

[funnylee in reply to PMRpro]

Lol.... I appreciate he doesn't see them all, was just shocked how prevalent it is.

[PMRpro Ambassador in reply to funnylee]

It is still classed as a rare disorder.

[DorsetLady PMRGCAuk volunteer]

Hi funnylee,

Along with Jane would say very fast reduction, and therefore most probably a flare. You can get some head pains with PMR so not necessarily GCA, but off course that’s always a possibility.

Classic GCA symptoms - scalp tenderness, pain in teeth/jaw when eating which usually ceases when not eating. My pains were like vertical bands from nape of neck up over head and down face parallel with eyes. I never had any temple pain as such.

When you say 5mg “has helped” are you now pain free or just less in pain. If the latter then you may need to increase a little more, say up to 8mg for a few days to scoop up the accumulated inflammation and then you should be able to come back down to 5mg relatively quickly.

Whatever, I would stay at 5mg for a few weeks and then reduce more slowly - 0.5mg a time and at monthly intervals.

Obviously if things don’t improve or you do get any visual occurrences you need to seek further medical advice.

[funnylee]

Thank you all for your comments.

[northwesterner]

This site has been great! I learned that there are gastro coated prednisone, I learned that I can split my dose and take some in the morning and some at night, descriptions of my pain like “feeling like I have washed all windows inside and out” and sometimes having the “wee old lady walk” first thing in the morning. My GP doesn’t always give me the info I need and my Rheumy answers my questions but I don’t always know what to ask. Thanks to all for the support

[30048]

I never had a severe headache with GCA ...just a dull continuous one. My jaw pain was the most dominant. Scalp tenderness came just before eye started to go south. Be careful.

[funnylee in reply to 30048]

Thanks for the reply.

[Carrollee]

Hi funnylee. I have pmr/GCA. My headaches were at the back of my head on one side and intense with scalp tenderness and tender all along under my skull. At the time I was deteriorating with undiagnosed pmr symptoms so didn't think about GCA. Once I was diagnosed with pmr (3 months later) I was told to be aware of GCA so I mentioned the headaches (which had gone by then) but my doc just said wait and see if you get new ones 🙄. Two months later I started with jaw pain then jaw claudication and was sent to the hospital for an assesment and soon after a biopsy and higher dose pred. Everyone is slightly different how it presents and of course it could just be to do with the VERY rapid reduction but I do think you should pursue another rhuemy if the only reasoning he gave you was "its in the wrong place". In the mean time try not to stress as that can add pains and sleeplessness that you can do without. All the best cc 🤗

[funnylee in reply to Carrollee]

Thanks Carrollee, I'm going to see if I can get a referral today. How did your jaw pain present itself? I can only describe mine as a 'tightness' around my jaw more so than pain. Also, what dose of preds did they put you on after your second bout of jaw pain?

I thought a biopsy would be inconclusive if you were already taking preds for PMR?

[Carrollee in reply to funnylee]

Hi funnylee. I started to get stiffness (tightness?) in my jaw when chewing tough stuff first of all then it progressed to when I was eating soft food, hard to lift the jaw up and down (and achey) but would stop when I stopped chewing. I then started to get pain ocassionally when speaking and niggles around jaw and temple. I put up with it initially hoping it would go away 🤓 . My GP saw me the same day I contacted him and told me to up my dose to 60mg immediately and took blood tests for ESR and CRP. He phoned the hospital who arranged a follow up pretty rapidly. The hospital said go down to 40mg as no obvious vision problems. The biopsy was nearly 3 weeks after the higher dose but the consultant said they should still be able to see inflammation or scarring If giant cell had been there at some stage. Mine was negative but my symptoms were too suggestive of GCA to not treat me. Not every piece of artery biopsied will have had giant cells growing there so it's a bit hit and miss really. However if they do find them then it's conclusive. I now have temple ultrasounds every 6 months and so far so good and am down to 71/2mgs and just about to go to 7mg. Let us know how you get on. All the best cc 🤗

[funnylee in reply to Carrollee]

Thanks Carollee, thats really helpful.