PMRGCAuk

Can the GCA monster do an encore?

Hi Everyone, it has been a while since I have been on this site. Hope everyone is doing as good as possible. My question is can GCA return after being treated for 16 months with prednisone? The doctor seemed to want to wean me off the prednisone as fast as humanly possible, and I am wondering if I was not on it long enough? Thanks in advance.

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With no medical qualifications at all my common sense tells me that if the inflammation was not completely extinguished then it could begin to build up again. I know that relapses are less common with GCA but that is when it is treated thoroughly. Are you getting symptoms?

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Hi, thanks fir responding, yes it has been happening this past week. Sore tender scalp, blurry vision, sore jaw when chewing. I have made an appointment to see my Rheumatica, but I have to wait until next week to see her.

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In the meantime - the same applies as at the start: ANY visual problems please go to the ED.

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It can return, in the sense that you don't have immunity to it and you will have a tendency to have inflammatory illness of one kind or another. If you are getting symptoms I'd suggest you get some bloods done as a first step. Good luck and hope it's not a relapse!

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Hi, and thanks for responding. I am having familiar symptoms like tender sore scalp, sore jaw when chewing, fatigue. I am definitely getting it check out by Rheumy.

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I would say yes - especially if you have been on a precipitate reduction. The pred has cured nothing in GCA either - and if the underlying cause of the inflammation is still running you could well get a relapse.

This

ncbi.nlm.nih.gov/pubmed/215...

agrees:

"...The median dose of prednisone and the median duration of corticosteroid treatment at the time of the first relapse were 5 mg/d and 16 months, respectively. Headache (52%) was the most common feature at the time of the first relapse. Polymyalgia rheumatica manifestations occurred in 30% of the patients at that time. However, none of them developed visual loss. Thirty-two patients experienced recurrences of the disease when prednisone dose had been discontinued. The median time from the disease diagnosis to the time of the recurrence was 23 months..."

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Hi PMR pro thank you so much for the info. I appreciate all you input, I wish my Rheumy was as knowledgeable! I have had dull headaches every morning too. Not severe, just enough to make you feel blah. It’s on the same side as I had before my right side. That’s the side they did the biopsy quite a while ago. I was also diagnosed with severe fatty liver in the summer, could that have been possibly from methotrexate?

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Possibly - methotrexate is associated with the full spectrum of liver disease including fatty liver disease. That's why you should be monitored constantly.

ncbi.nlm.nih.gov/pubmed/288...

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If I find out that the GCA has returned, would I be able to safely go back on prednisone do you think, because of my liver situation?

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It is probably the methotrexate that did it - but steroids can too. Actemra is also a bit dodgy with liver problems I think. You'll have to discuss it with the doctors I'm afraid.

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Hi misaryk,

Yes it can, in fact the first 18 to 24 months is when it most likely to happen.

Patients need to be on the correct level (for them as individuals) of Pred for at least 2 years, many a lot longer nearer 4 years.

I as others have said please don’t decrease any more and should things get any worse the off to the ED. .

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Hi DorsetLady, thank you so much for responding. I hope you are doing good yourself. My rheumatologist has had me stop the prednisone as of end of August this year, in total I was on prednisone for close to 15 months. During that time she seemed to really want me off the prednisone so added methotrexate to the mix to help wean me off. As if this past week I have been having headaches, especially on my right side above my eyebrow, tender scalp on the right side too and right side of jaw hurts when chewing. This is the same side I originally started out with in 2016 summer. I am seeing the rheumatologist end of next week, do you think I should go to the ER instead? Thanks

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I know a few rheumies who are totally of the opinion that methotrexate has no role to play in GCA. I DO get why they want patients off pred asap - but please, the side effects of pred are peanuts compared with GCA.

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I agree completely. I think the methotrexate caused more problems then actually helping. Again thank you for taking the time to respond and help me with all your knowledge. Much appreciated. 😊

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I mean August 2017

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Hello

Just another one with GCA and Polymyalgia. I was diagnosis in February 2016 and put on 60mg prednisone by the rheumatologist after a biopsy etc.. This was being steadily reduced over the months but once down to 3mg I started to feel ill again last November. The dose was increased to 5mg but did not stop a relapse of GCA two weeks ago 20 January. This one more severe than the initial one. I went to A&E the day it started as had double vision and pain over eyes down side of face and in shoulders. I took a 60mg dose of steroids before I went to A&E and wanted their advice. They confirmed it was the correct thing to do and to see my GP on the Monday 22 January I was lucky to have an appointment already booked with the rheumatologist on Monday 22 January . I have had an MRI scan, blood tests and a Doppler carotid arteries ultrasound, awaiting the results. I had an eye examination at the Ophthalmology Dept. Wednesday 31 January. He stressed how important it was to start taking the correct high dose of steroids immediately I felt a relapse coming and said to ask the rheumatologist if I could go onto 60mg myself at the onset of a relapse.

I don't have any medical knowledge so cannot add anything to all the good sound advice others have sent you. I am amazed to read their blogs as they seem to understand it all. Must say I went through the initial diagnosis without asking many questions and until being on this site really did not know much about the disease. I am a head in the sand person. Probably encouraged by loosing my son to medical negligence. It brings about a feeling of hopelessness with illness. I now feel strongly enough about not loosing my sight to actually take an interest. I hope you find all the help you need and would only say if in doubt seek advice immediately.

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Thank you so much for your advice. I am very sorry for your loss. I can’t imagine, and would be very leary of doctors too. I am going to push to get in tomorrow to see my doctor. Was tempted to just start prednisone again on my own, but a little nervous about doing so.

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I hope your GP is a knowledgeable one. The more I read the more I realise what a lottery it all is. Reading previous replies is so confusing as we all have had different advice re the dose we should start on when GCA is diagnosed or reappears. The eye doctors, rheumatologist and GPs all have different ideas. Some on the forum say if one has visual disturbances it should be even higher than the sixty I have been given both times. Luckily it appears I have got away with it for now as today I could see properly, the last of the fuzziness has gone, it's taken over two weeks. This site is reassuring as its people living with the problems and not theory. Can understand your being tempted to start the prednisolone on your own, I did two weeks ago. I would again if the visual disturbances were to start again. Hope you have now been to see your GP. Good luck with it all.

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Yes the disease is a very confusing thing. The rheumatologist know prednisone is necessary, yet pressure their patients to get off of it too soon sometimes I think, which cause flare ups. I don’t have a lot of faith in doctors myself. I couldn’t get in today, she wasn’t at the clinic today. But I am seeing her this week at least. Hope you are feeling at least a little better now.

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Good you have an appointment and hope you find proper help. Think the big problem is in knowing, asking for and getting a big enough ititial dose to damped down the inflammation. This episode I took 60mg Immediately, a friend insisted she took me to A&E she was so worried at the double vision,the side of the road lines we're all over the road and the pavement jumped out into the road. TV had two of everything. The pain over eyes, down side of face and temple and the back of the neck was stiff and painful right into my shoulders. The pain in the shoulders are where it all started about two years ago, like a red hot poker being pushed into you. Then the aching muscles in arms and legs and no strength. I have put these pointers down as they were my entry to this life changing disease. Everyone has different markers to look out for. Next time I will be a little more on the ball and as soon as the eyes or headaches start I will put myself back onto a high dose of steroids, not go to a GP to be told probably a migraine, which I don't ever get. It took two more weeks to fully develop and this time I did wonder if my sight would ever be OK again. My biopsy came back negative two years ago which I read often happens. I had been on steriods some weeks before it was performed. Hopefully some of this will give you an insight into how complicated the whole darned illness is. You know your body and when things aren't right, better than any medic. Keep asking questions and hopefully someone will come up with a good plan for you. Also the more knowledgeable people on this site are brill, have travelled the road and not afraid to say it how it is. Always good advice at hand immediately. Don't know about you but I was so ignorant about it all till I found the forum last week. Will be interested to hear how yours is handled if you have the energy to reply. Best of luck.

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Hi misaryk

Your comment about Rheumies wanting patients off Pred too quickly is so very true. Yes we all know long term use at high doses can cause problems, but there’s not a lot worse than losing your sight to GCA. And of course you’re also correct in saying that their actions very often cause flares, and the patient then ends up taking more Pred overall rather than less! Bonkers!

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Unfortunately it seems true. How are you doing with your GCA, are you still on prednisone yourself?

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Hi misaryk,

My GCA has been consigned to memory only - thankfully- went into remission about 20 months ago (after 5.5yrs), and I took my last dose of Pred (fingers, toes & everything crossed) in Sept 2016.

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It isn't JUST that we live with it all - we have all also read the medical literature and guidelines. Which a lot of doctors don't seem to have done. 60mg is the bottom end of the range for a patient with visual problems - they might not need more, but it is too late once they have lost vision, it is irreversible. The side effects of pred ARE reversible.

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Hi Charlie789

How terrible to lose your son that way - I can understand why you would feel concerned about the medical profession generally. It is certainly sometimes worrying to read on this forum and elsewhere about the incompetence of many medicos - on the other hand I try to be a grateful recipient of well-researched and administered treatments when and if they are available. For me it is the intersection of people's experience(s) as demonstrated here - with the very best outcomes from competent doctors/specialists which enables me to at least 'keep the faith' with modern medicine while it evolves, I hope everything improves for you very soon and you get all the best medical and other support you possibly can.

Best wishes

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Thank you for your helpful comments and good wishes. You are all very kind and I have found more reassurance from the this site than most of the medics. The first doctor I saw in the Eye Clinic was a very self opinionated young man, suggesting my GP could be wrong diagnosing GCA. The rheumatologist appears to have to check with the eye clinic doctors or someone further up the line if feels he would like to organise scans. Perhaps this is the norm. I still feel our local hospital is a good one and do their best. We are lucky to have a caring rheumatologist as so many having a problem finding one. One question everyone asks me is "when was GCA first diagnosed ". Does anyone know?. My sister remembers my mother wearing an eye patch.

My best wishes to all fellow sufferers

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Hi again Charlie - I have seen some reference to the 'history' of diagnosis of PMR/GCA on this or the patient forum - but I can't now recall exactly the details. Anyway here is a link to one article discussing some aspects relating to the 1930's but I am sure I have seen other references to much 'earlier' manifestations (if not 'diagnoses') elsewhere :

academic.oup.com/rheumatolo...

No doubt PMRpro and other forum members will be able to send you some more detailed info about historical factors.

Regarding your mother though - and we are likely in a similar age group (I am 65) my own mother almost certainly had GCA as well - losing much of her eyesight in the early 1970's with what was clearly undiagnosed GCA - they treated her primarily as a 'neurotic' woman with bad headaches .... Given that even today GCA is all too often not well understood or appropriately treated we can only imagine how many people in previous generations must have gone under the 'radar' and suffered the lifelong consequences.

Best wishes

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Hi Rimmy

Thank you for that, an interesting read and good starting point, just not a lot of detail as is to be expected from that time. Thank you, it will start me on a read to investigate and hopefully I will find out more. Those tired times we all have are good, we can allow ourselves a quiet sit and a little research. My brother in law who is a vet is really interested as to why so many people are diagnosed with polymylgia now. Is it because it now has a name and not put down to "just" aching muscles!!!.

For everyone else please be careful last weekend I became very spatially unaware with the fuzzy eyesight knocking things over, seeing things not there and eventually knocked over a full mug of tea, cleaned it up and somehow in making next one poured boiling water from kettle over my hand instead of into the mug. So go easy on yourselves even if it takes so much longer to do the silly little things like making a cuppa.

To the Grandmas enjoy your times with the grandchildren, mostly they only remember you giving them your time and attention, so precious. Not how many cartwheels you ever did.

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What sort of detail do you want?

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Hi again Rimmy

Have just reread your message I wish I was in the sixties but no I will be eighty in November stay young

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Thanks Charlie I am TRYING to 'stay young' - but with limited success - ha ha !!

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You sound as if your are doing well a positive attitude is all Rimmy. Not always easy with this tiger we have chasing us have a good weekend

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ncbi.nlm.nih.gov/pubmed/169...

It was described over 100 years ago: PMR was first described and called senile rheumatic gout by Bruce in 1888 and GCA in 1890 by Hutchinson. Realisation that GCA was a specific disease dawned in the 1950s and it was only in 1964 that it was realised that there was a close association between the two disorders.

Prior to 1950 there was nothing that could treat it - pred was only isolated and the structure described in 1950.

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Hi

Somehow missed replying.

Thank you for that information. Gosh how knowledgeable. Well it certainly is not a new thing. Gout one associates with heavy alcohol users, or am I wrong. I know not always but mostly.

Life this weekend in Surrey is a very different place. A few days of normal vision and pain subsiding works wonders. I am still concerned that the shoulder/ neck pain is hanging on, would I be out of order in asking for an Echocardiogram on the Thoracic Aorta as I read this can be a hidden problem. The shoulder/neck pain was one of the first really bad sites and continues to be so. It is also the last to be pain free, if it clears up at all. I hope you don't think I am being an alarmist and I certainly don't want to be a drag on the health service but there is this niggle that won't go away. With your succinct knowledge and direct replies I feel brave enough to ask.

Sending happy thoughts to you all and I hope everyone has sorted out those early visits to GP's Rheumys etc and found answers.

Looking at two snoring dogs is good therapy they don't keep the unsociable hours of the sleep deprived, hamster on a wheel humans we become for a while

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Not gout, senile rheumatic gout!!!! Different thing. Hisotrically gout was associated with rich living - too many purines from all that meat rather than alcohol I suspect!

I also have myofascial pain syndrome and that goes for my low back and shoulders/neck. That was a feature before PMR and is commonly found along with PMR. It is there and doesn't ever really go away. Whether the NHS would cough up with an echocardiogram I don't really know - they'd want some more justification than "patient has GCA" I suspect.

You do know about the Chertsey support group I assume? And about the best rheumy for PMR/GCA in Surrey? Rod Hughes at Chertsey.

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Hi again

Thank you for all that info. No I didn't know of Rod Hughes (my mothers maiden name Hughes) or the Chertsey support group, I will look into him. I am very new to this site so learning daily.

May I ask how your myofascial pain syndrome was diagnosed. The rheumatologists etc really do not explain when we say we have pain in different areas. I think I now know the trigger areas but am still not sure of the whys and where's.

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pmrgca.co.uk/groups/

Shirley, who posts on here as Celtic, is in charge and Rod Hughes is their go-to medic! Not sure what you'd call him, he goes and gives a talk every so often.

The Pain Clinic here where I live gave it the name though I'd already heard a lecture about the link between MPS and PMR in Innsbruck. My entire back muscles were as hard as boards - in spasm and causing a lot of pain!

This

mayoclinic.org/diseases-con...

gives a rather basic description.

spine-health.com/video/myof...

(and see the associated links just below it) Is also helpful to envisage it - but they don't mention the relatively new finding that the trigger points are actually concentrations of the same cytokines as cause PMR, just in PMR they are systemic, in MPS they are localised and form these points which are to be felt as hard knots of inflamed muscle fibres. Some of the trigger points coincide with the so-called trigger points in fibromyalgia BUT they are NOT the same (I found a reference the other day that gave them as alternative names for the same thing. NO they are NOT!!!!). I was talking to my physio about it the other day and she snorted too but also told me that many of the trigger points also follow the meridians that are used in acupuncture which is also used in the Pain Clinic although I wasn't offered it by my specialist - she used a technique called wet needling which my GP also uses occasionally: either saline or lignocaine local anaesthetic is repeatedly injected subcutaneously to form small blisters under the skin. It is very painful fleetingly while it is being done but stimulates the fascia (the transparent skin around the muscle groups) and it relaxes, healling itself. Manual mobilisation of the spasmed muscles also works well but is quite slow - my piriformis muscle repeatedly causes problems and my shoulders are also a long term project!

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Again thank you for sharing your immense knowledge? As I read it, I now understand why I have spent so much time having Osteopathy, Chiropractice work and sports massage undoing all the knots, acupuncture, reflexology, Bowen and Timotay over the years. I was always having soft tissue and back issues. Being a horse rider seemed to be part of the problem.

I was interested to read about Acupuncture and the meridians. I had acupuncture about nine months into the initial GCA + Poly diagnosis. It did help so maybe time to return to him. Aromatherapy is relaxing and very beneficial.

It is interesting when things come together and one can start to make a little sense of it. Now wondering if all this started or was lying dormant for years.

Do hope you wont find this too boring but was lead down the path whilst reading of the many problems you are dealing with and what help is available. Some of which does not sound pleasant. Wishing you well and as pain free as is possible.

Thank you again for your time.

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I don't find anything boring - it all adds to the suspicions I've held about the PMR/MPS connection. I think we may be the refractory group and finding the right way to manage it all lets us manage on a lot less pred - which is always good. The MPS has been a feature for a long time and in my late 20s I had something that bore a decided resemblance to what is now acknowledged to be ME - which may be a/i in origin too. The fatigue was the same! But it improved in 6 months and went away altogether after 3 or 4 years.

Bowen I used a lot in the UK - didn't have to beg from the GP to get it! But the women here are a bit airy-fairy, not like my NE of England therapists! What is Timotay

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This is your Saturday evening laugh, old age catching up here, it's McTimoney Chiropractice not the shampoo!!!!😅. Also had caudal epidurals over the years. Hope these spelled correctly. I had a guy for Bowen and think he was pretty good. It's awful to loose a good one as we come to rely on them. Didn't think you could get them on the NH.

You make good connections which are thought provoking. Your ME again very interesting, it's the fatigue isn't it. I had whooping cough as a child, jaundice as a youngster and migraine from 9 to 16 years, pleurisy and pneumonia early twenties. On B12 injections every three months. Probably no connection but one starts to wonder, I also had a lots of sprains and bone fractures and two major cuff repairs through the years. I'm not quite the wreck I probably sound but definitely some weak points, hence the massage machine and the ultra sound which I couldn't do without.

As you say its managing it all as best we can, I was feeling so well after 23 months of very gradually reducing to 5mg then the rheumy decided I should go to 3 mg . Now of course back on 40mg and still in pain.

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I didn't - that was the point, had to pay but at least I could get it with no fight!

If you are on B12 shots - is that pernicious anaemia? That is also autoimmune - and when you have one, others come to play too. But I think they are all places on a massive spectrum and what you develop is unique to you. Sometimes there are enough people to share enough labels to get a big umbrella label. But everyone gets odd add-ons which the rheumies dismiss - if they say so...

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I have had the B12 injections for about 4 years, after blood tests during my Anal SCC treatment. My GP just asked if I had been told my B12 blood count was abnormally low. She then said I should have the injections for life. I didn't question it further. I had pernicious anemia during my twenties after an operation but had injections in my bum for that, much more painful then the arm ones I now have. About ten years ago I was diagnosed with diverticulosis during one of my colonoscopy or endoscopy with Prof Marks. Over the years he had removed many polyps before the cancer. Of all the illnesses this one is proving one of the most trying especially in these early days of the relapse. It makes the daily grind with the muscle pain very difficult. The high dose of preds taking longer to kick in this time. Is this par for the course?. Last time it was days this time we are into weeks. Hope you don't mind my asking.

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Hmm - weeks seems a bit excessive. I assume you have told the rheumy? Has there been a real improvement even if not as good as last time?

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I have not been sent an appointment with the Rheumy as yet. I saw him a few days after the relapse but nothing since. He said he would arrange one but nothing. Haven't had the scan results either. The eyes are fine now, it is the muscle pain that is bad. Much worse than last time. I had a good acupuncture treatment today which has helped. I did find them great first time around too. Maybe that and a restful nights sleep will bring an easier day tomorrow.

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I think they changed injection treatment in the 80s. My gran had pernicious anaemia wand was pleased for less painful treatment.

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Thank you for that. I did wonder why there was a difference this time around. A lot less painful thank heavens.

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