I wonder if any of you could possibly give me some of your sage advice, please. I read a comment recently from I think it was SheffieldJane saying her PMR had “morphed into GCA” after 4 years. I am a bit worried. I have had PMR for just over 4.5 years and currently am on 4 mg which eases my PMR aches and pains once I have taken my Pred in the morning and it has kicked in. However on top of the normal pains recently I have started to have pain in my head. I do get ocular migraines sometimes but this is different - it feels a bit like my skull is in a vice and my head is a bit tender in places. No sight issues, protruding veins in my temples and no jaw pain but this is new and can be quite intense some days so I am a bit concerned. When PMR morphs into GCA what would the symptoms most likely be? I have increased my Pred to 10 mg today and intend staying at that level for at least three days to see if it helps. Any advice would be most welcome and much appreciated. Thank you in advance.
PMR morphing into GCA: I wonder if any of you could... - PMRGCAuk
PMR morphing into GCA
Have you tried taking an ordinary painkiller for the headache? Every severe new type of headache should be reported to your doctor because there are so many potential causes but what you describe could equally well be due to muscle tension. Where is the pain/tenderness? Have you any other symptoms - feeling unwell, fluey or so on.
The trouble is any one GCA symptom only appears as the thing that sends the patient to the doctor in 40% or fewer patients - so there isn't really anything you could say "that's GCA". It could even be due to the low dose of pred not being topped up effectively by the adrenal glands.
Thank you for your reply. I tried taking ibuprofen yesterday which didn’t seem to have much effect. The pain is worse at the base of the skull when I wake up but then moves further up my skull once I am up and seems to move around to the front and sides. I guess it could be from muscle tension. The tenderness is on either side of my head but further into my hair than my temples. I didn’t want to bother my doctor as they are so busy at the surgery. I don’t feel fluey at all. I am just worried as it doesn’t feel like my normal headaches because of the pressure feeling and tenderness so I wondered what happened to SheffieldJane when her PMR morphed into GCA. I think I will stick with the 10 mg for a few days and see if that helps. Thank you - I really appreciate your reply.
I'd really be inclined to speak to the doctor - though whether a GP would be any help is another matter even if you could get to speak to one!
But you know the standard signs and that headache COULD be suspicious, GCA likes the occipital area (the low back of the head). So if anything more "typical" appears - at the very least 111 and visual symptoms of any sort, 999.
I think SJ's symptoms were very sort of general and the diagnosis was made on the basis of a u/s of the brachial artery (armpit) as being large vessel vasculitis
Thank you. I could contact Dr Hughes’s helpline - he did say I could if I had problems - although he handed me over to the doc with a letter headed “PMR and GCA abating”, which confused me somewhat as we had never discussed GCA.
That sounds suspiciously like my GCA pre diagnosis (no PMR, so no morphing).........and your GP may be busy, but as they keep telling us Ad nauseam they are open for business - so please contact them.
Even if it’s not GCA, as PMRpro advises any new headache must be checked.
Oh dear - I am really hoping it isn’t. After 4.5 years of this I was hoping I was well on the way to remission. I will call Dr Hughes’s helpline. Thank you.
We all hope it’s not - but best to get it checked outPlease let us know outcome.
Thank you. I just called the Rheumatology helpline number Dr Hughes told me to use if I needed to and the message says not to leave a message after 1 pm or at weekends and to call back on Monday before 1. I read that St Peter’s is being used primarily for Covid patients now and is over-run. I shall monitor my head and take it easy and call them back on Monday. But if I get any sight disturbance in the meantime I shall go to A&E.
Good plan.
It does make me feel better having you and PMRpro listen and advise me, thank you so much. You are both wonderful. ⭐️⭐️ xx
❤️That’s nice of you to say......but perhaps more experienced in PMR (herself) and GCA (me) on a personal level than your doctors.
It’s all been said really SusyTe, including a very accurate description of my case by PMRPro. My symptoms were no more specific than yours. I did have a hunch that all wasn’t well though. I was on 3 mgs of Prednisalone. Like you, I am blessed with an excellent Rheumatologist, Dr Sarah Mackie, who leaves no stone unturned and she arranged for me to have the specialised Ultrasound Scan and there it was, Large Vessel Vasculitis, lurking in my armpit ( at least it was visible there) nothing had shown up in PET Scans and other tests. I was however struggling to get off Pred and yet the PMR appeared to be in remission. I may have had GCA/LVV alongside PMR for sometime. It is gutting to get this diagnosis after you feel you’ve done your time with PMR but you just have to get on with it really. I was lucky enough to be allowed Tocilizumab so my spell on high dose Prednisalone was a matter of weeks and I still have hopes of getting well down from 10 mgs this year. GCA is a serious disease, please don’t hesitate to seek an accurate diagnosis. You matter.
Thank you for replying, Jane - I really appreciate it. I shall definitely be in contact with the Rheumatology Helpline on Monday. I am glad yours was diagnosed, even ‘though none of us would want that diagnosis. As you say - if it is GCA then I just have to get on with it.
This sounds odd, but try it. Spread your fingers through your hair and gently tug all over your head. Each hair follicle has a little muscle attached and can cause tension headaches. Remember to gently tug all over, relaxes those muscles. Bit like Shiatzu.
Could you all clear something up for me? Are PMR and GCA really just a continuum? Can you have GCA without having PMR first, or PMR and GCA at the same time? Very confused.
There is a school of thought that thinks PMR and GCA are different expressions of the same disease. You can indeed get GCA on its own and PMR on its own, both if you’re unlucky, in any order. GCA symptoms often involve a new and unusual headache, jaw claudication, visual symptoms - even temporary sight loss, scalp pain, temple pain and earache sometimes. PMR usually has bilateral pain, typically in the shoulders, arms, groin, with stiffness and impaired mobility. All will become clear. You’ll feel pretty rotten initially, don’t fall for the fake energy Prednisalone brings, be sure to pace your activities with plenty of rest. When you begin to taper down your Pred dose, never reduce by more than 10% of your dose and use one of the tapering programmes in the pinned posts displayed to the right of your screen. Stick with us, this forum is great for support and information and experience. Take care.
Jane, please could I ask you more about Tocilizumab? You say you were lucky to have it - does that mean it is not normally prescribed?
I believe that we are still in a minority priority category. My Rheumatologist had to apply to a panel. These decisions are driven by money as well as clinical considerations. I believe that it could prove generally efficacious to GCA patients.
Thank you. I am not sure I will be able to have it in that case. I am just dreading going back on a high dose of Pred - I felt so lousy on 20 mg that the thought of 40 or 60 mg makes me upset. But so be it if that is what is necessary.
Say all of that. Pred not suiting or working for the patient is part of the criteria for Actemra/ Tocilizumab.I felt oddly ok during my little spell on 40 mgs, they tried 30 mgs which was not enough.
Thank you, Jane. The more info I can glean before speaking with Dr Hughes and maybe my GP the better.
My money is on Dr Hughes.
I agree - he is always my first port of call and I shall be on the ‘phone to his helpline first thing on Monday. There is definitely something not right with my head.
Yes, yes and yes - in that order!
Not sure of the figures off the top of my head but PMR can be one of the symptoms of GCA developing but also may not appear until the GCA patient reduces to the lower doses that are too low to manage PMR. But you can have PMR without any overt signs of GCA - although quite a high proportion show it with the right imaging.
Here are some numbers:
"GCA and PMR commonly overlap. PMR is observed in 40–60% of patients with GCA at diagnosis, and 16–21% of patients with PMR may develop GCA, particularly if left untreated [2]. Modern imaging studies using vascular US and/or 18-fluorine fluorodeoxyglucose PET/CT (18F-FDG PET) have demonstrated that at diagnosis, up to 80% of GCA patients as well as one-third of patients with PMR have subclinical LV inflammation. Patients with treatment refractory PMR commonly have cranial and/or extra-cranial arteritis on imaging"
academic.oup.com/rheumatolo...
has a nice figure showing the overlaps in terms of symptoms. But as the text says - it is only really clear if the right imaging is done at the right time - and even a little pred can suppress the results.
Sorry - one more question. Would steroid-induced diabetes cause headaches? I guess I am clutching at straws in the hope that I don’t have GCA. Not that I want diabetes either of course. I am so sorry to keep bothering you.
I don't know to be honest - although Healthline seems to think so. But I'd have thought that there are a lot of other symptoms you would be likely to have too
Just a quick update for all the kind people who responded to me. Having had a painful head all weekend I spoke to the doctor on Monday and she said I should see Dr Hughes as she had never seen a case of GCA and would just be going by books. She asked me to go in for blood tests which I did and they all came back normal - but she said that could be because I had been taking 10 mg for 3 days before them (which had done nothing to ease the head pain). She wanted me to go on 40 mg straight away but I spoke to Dr Hughes’s PA and she asked him about that. He said to only go to 20 mg and then to see him next Monday when I will have been on that dose for a week. But if I had any sight disturbances to contact him as an emergency. The 20 mg has had a wonderful effect on my PMR but hardly any effect on the head issues, so I am looking forward to seeing what he has to say. I am having my Covid vaccination this evening. I did ask him, via his PA, if I should delay it but he said to go ahead with it. Thank you for listening and being there for me - I really appreciate it. ❤️ xx
Help I have just joined this forum and came across your post about possibly having GCA . I am wondering what your outcome of your tests are as your last post is a year old . Hope you are fine . I am recently diagnosed but have similar symptoms
Hi. I am sorry you have this illness but am glad you have found the forum.Dr Hughes decided that based on my blood tests and symptoms my PMR had not morphed into GCA. I then saw a neurologist and he said he thought it was chronic migraine that was causing my head and skull ache. He gave me occipital nerve block injections and they really helped.
Have you told your doctor about your headaches? If not I would strongly suggest that you do.
I would also suggest that you start your own thread on the forum and ask for advice - there are a lot of people on here who have more knowledge than me.
❤️ X
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