I was diagnosed almost a month ago with PMR and am on prednisone, and under the care of a rheumatologist that I like very much. But am so paranoid about getting GCA! I've been noticing slight headaches that come and go. Has anyone actually experienced the onset of GCA after being diagnosed with PMR? And if so, could you share your experience? Thanks for easing my nerves......
Yes I have had GCA a couple of times they just put your dose up of the Prednislone
to 60 mg for a few weeks and it calms down it is not very nice but there you go its one of those things we have to put up with, If you get pain in side of Jaw or Head and eye then go straight to Morfields or and eye hospital so they can sort it out. wishing you better happy new year
Hi Deborah, sorry to hear of your recent diagnosis. No, I haven't developed GCA, and hope I never do. I'm simply replying to assure you that your anxiety is quite normal. You are very new to this condition that although not terminal is very unpredictable, throws each and everyone of us the odd curve ball and is so, so frustrating.when I was diagnosed I was in so much fear of PMR and the possible development of GCA but this condition does that to us. I consider myself to be a real " hard nut" but this condition has reduced me to an insecure, worrier. I've suffered from many odd symtoms, including the odd ear ache, nerve pain on left hand side of temple, tired and painful eyes, and like you slight headaches that come and go.
1 year in and I've calmed down and accepted that I have to live with this condition wether I like it or not, and I definitely do not like it. I am aware of the symtoms of GCA and if At any point I believed I was displaying any of the symtoms I would not hesitate in seeking medical help.
And that is exactly what this forum is for, and that's to ask a fellow sufferer to share their experiences, and all their answers help out greatly the next generation of sufferers to better deal with this condition. Good luck. Christina
I have PMR and also GCA. For me the symptoms were: severe head ache but only one sided. Specifically just above my ear in the temple area. Pain in my jaw but onky when I was shewing and blured vision. My head hurt so much that brushing my hair would make me almost cry and I am not easily bothered by pain. Also even a bit of wind in my face made my head hurt. GP put me straight onto 60 mg of pred and urgent rheumy appointment which I did not get to as I ended up going to a&e as the pain and symptoms after 2 days were getting to much to bare.
Hope all goes well for you . If you unsure it is always best to get it checked out asap
About 1 in 6 patients who are diagnosed with PMR first go on to develop GCA so it isn't really that common.
If it is a slight headache that comes and goes the chances are it isn't GCA. The most typical symptoms are jaw pain when you chew that goes away when you stop chewing, there may be scalp pain/tenderness. Many people who have headache with GCA describe it as the "headache from hell" - it is a new headache of a sort you haven't experienced before and isn't relieved at all by ordinary pain killers. The most serious signs are visual ones - feeling as if there is a curtain across your eye, patches of loss of vision that may be fleeting or last longer or double or blurred vision, especially in the morning or after waking from a nap during the day. Other symptoms may include a dry irritating cough and/or sore throat, claudication pain in upper arms and thighs when using your arms or walking - again it goes away when you stop doing the activity that causes it. You usually also feel unwell, as if you have flu, and may have sweats or run a slight temperature.
Everyone is different and each of the symptoms appears in only perhaps 1 in 5 of patients. The important thing is to be aware but not to panic - or you will end up going to the doctor over and over and they will get dismissive when you appear.
If you do develop symptoms like these then you need to see a doctor urgently - that means the same say, not an appointment next week, or even tomorrow. You can also go to an optician and ask for them to examine the back of your eyes - explain why you are asking. If you have full-blown GCA that is putting your sight at risk then they will be able to see damage to the optic nerve. Otherwise go to A&E and ask for the same thing. It doesn't have to be an eye hospital, but often you will get more help from an optician than a GP. The dose of pred you are on should be raised to at least 40mg/day for GCA, if there are visual symptoms to 60mg and you need to be under the care of a rheumatologist. Since you are already under a consultant then you should be able to call his secretary if you suspect you may be developing GCA.
I have had PMR for 10 years, it is almost certainly GCA affecting larger arteries that I have and I have only developed visual symptoms once, having double vision, mostly in the mornings. My rheumy put my dose back up to 15mg - he doesn't use the very high doses except when a patient has definite visual symptoms - and it all cleared up within a few weeks and has never come back.
Don't worry too much - you will see GCA symptoms around every corner if you do!
I like that bit about being " a head ache from hell" very good .. hit the nail on the head. And it certainly was when I had it. Great explanation as always eileen 
PMR develops into all manner of TLA's.
(Three-letter acronyms)
Diagnosed with PMR in July
November 14 experienced double vision and blured vision diagnosed with GCA
had scan to make sure no brain tumour etc. put on 50 MSG of prednisone and hav been reducing by 1 mg every 2days unless problem scarey stuff
Thank you all so much for your helpful replies! I am not in the UK but in the US in New York City so it's fun to see your advice about going to "Morfields" (what's that?) and A& E.....
It really is a big help, and it does ease my worry a bit, knowing that my anxiety is normal and what to expect from the dreaded headache if it comes my way. Hopefully it WON'T come my way! Another question...the plan my rheumatologist has prescribed is for me to be on prednisone for a year......I'm on 15mg for a month, then down to 12.5 for a month, then 10 for month, then dropping 1mg each month till I'm off it. Of course this depends on my bloodwork and how I react to the changes. But is it common for this disease to really end after one year?So much of what I've read is that people have this 2-3 years and sometimes way more, like some of you....10 years plus......my guess is everybody's different and there's no way of knowing but I guess I need some hope from first hand experiences where it's truly gone away after only one year.....
NO is the short and simple answer. According to the medical literature about a quarter of patients are able to get off pred in less than 2 years but they are a higher risk of a relapse at a later date than the rest. About a half get off pred entirely in up to 4 to 6 years and the other quarter require pred at a low dose for much longer, sometimes even for life (though how many of them are the patients in their late 70s or older I don't know). I don't know anyone off pred successfully in under a year. I know a man who got off pred and is back to running after 18 months - men are different. In fairness, the forums won't have the people who get off in a year - the forums are skewed in that most of the people who come looking and then stay are the ones who have a rougher road.
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
If you follow this link it takes you to another thread on this site which has links to sites you will find more info and other forums here in the UK. It also has a link to a paper by a top PMR group in the UK which has recommended a reduction plan for managing PMR which they find results in a flare rate of 1 in 5 rather than the 3 in 5 rate which is normal with other faster reduction plans. They keep patients at 15mg for 6 weeks or until the symptoms have improved as far as they are going to, then 12.5mg for 6 weeks and then 10mg for a YEAR before continuing the reduction.
To try to reduce the way your rheumy has suggested is very fast and most people would develop a flare very quickly. The main cause of flares is trying to reduce too far and/or too fast - and that is a statement that comes from US literature by the way. Yes, everyone is different - but not that different: everyone who tries to rush off pred has problems!
A&E is what we in the UK call the ER/ED. Moorfields is the large specialist eye hospital in London - few of us would get to go there either!
That is a VERY fast reduction for GCA. Some of the most recent research shows that GCA activity is still present after 6 months of high dose pred (at above 20mg) which suggests higher for longer might be better. Not that anyone wants to keep people on high dose pred for very long but it is preferable to a flare. One lady took 6 months to get from 50mg to 20mg.
Hi Deborah, Eileen has hit the nail on the head, slowly, slowly catchy monkey!
If I could just add that many drs like to also try a drug called methotrexate, especially if their patients have experienced a flare up or are not responding to the drs treatment schedule as quickly as they would like.
There is much debate here regarding this drug. It appears that as an additional method of treatment it is gaining popularity with many drs, however, the drug was not developed for PMR and has many side effects and the jury is out, but tipping to the unflavoured side by patients. I will be fighting tooth and nail should my rheumatologist attempt to put me on this drug.
as Eileen has said, this inflammatory condition will burn out as and when it's ready and prednisone is not a cure it simply masks the inflamation. So it stands that if you reduce the drug that is masking the inflamation too quickly and flare up will be the result. That's why a the slow, slow method is put forward by patients.
The dose of steriods has yo match the inflamation and not the infamation match the dose.
good luck. Christina
Just to add to what Christina has said about MTX.
It is the first line drug in rheumatoid arthritis and has been used for many years so plenty is known about it. Some experts have believed it can be used to reduce the pred dose - not because it has any effect on the PMR but because it changes the way the body processes pred and maybe you can get the same effect for a lower dose.
Three studies were done about 10 years or so ago. One showed it did reduce the pred dose so lots of doctors got very exited about it and it was recommended for patients who had difficulty reducing the dose of pred without a flare. Then two other studies were done and they were different: one shoed it didn't work , the other came to no conclusion. Combine all three studies and there is no significant evidence that it helps in the long term. It may help reduce the dose initially but overall from beginning to end of the illness the pred dose taken is similar and there is no difference in the number or severity of flares. All that is being done is adding in another drug with its own side effects, some quite unpleasant. So the most recent recommendation is no longer to "consider using methotrexate" but "methotrexate has no role to play in PMR".
Our experience has been that if patients reduce very slowly, in small steps of 1mg maximum and spreading the reduction over a few weeks, they can reduce far further than before without experiencing a return of pain - because steroid withdrawal discomfort is the same as PMR pain and is often confused as a flare. They don't need MTX.
And one final point: when reducing you are NOT reducing to zero. You are reducing to find the lowest dose that manages the symptoms. That is all you can do: what we call PMR is just the symptoms of an underlying hidden disorder that makes your immune system attack your body as if it were an invading virus or bacteria and leads to inflammation. Control the inflammation and you control the symptoms - nothing has been changed about the real illness, it will eventually burn out and go into remission. In the meantime it may be more or less active - and you will need more or less pred. As Christina says - the dose of pred has to match the inflammation so cannot be dictated by anyone however clever they think they are.
Hi Eileen, I really liked your in detail account of symptoms. I have just been diagnosed with PMR in oct. it has been a nightmare , the last 3 months. I am new to this site. You are the first person I have talked to~
do you or anyone know of a good diet for pmr? Do you think a certain diet , will help this condition??
thank you
+
There really isn't any evidence that any particular diet will make much difference in terms of omitting things no. I was gluten-free when it hit, have had periods with alcohol-free, leaving out the "nightshade" veggies (potatoes, peppers, tomatoes etc) - none made any difference I could tell. I have lost a lot of weight by cutting carbs drastically and that is something that seems to help with the pred-associated weight gain. You will always find people who swear doing this or doing that will "cure" PMR - usually they have a stake in it: have a book to sell or something.
One lady on here eats a lot of "anti-inflammatory" foods - including oily fish 3 times a week and she felt she really noticed it if she missed out on that for any reason, like being on holiday where it is sometimes so difficult to have much influence over what you eat.
Be careful with supplements too - other than calcium, vit D and magnesium which are helpful don't try "herbal" remedies without asking a pharmacist about how they might affect your prescription medication. Some are downright dangerous and can make you very ill.
And anything you don't understand or want to know - just ask!
There is another forum which is rather different to this one - it is like one big coffee morning support group! We share experiences, photos, jokes, stories - if you want a laugh there is usually someone who will help out as well as providing solid and accurate advice. It is associated with the northeast of England support groups and their info website.
Hi Eileen you mention another site how do you join it please it sounds good regards Jeannette
Klick on this link:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
The first link in the first post is to the northeast support group info site - all approved by healthcare profs. The second is to the forum - you have to be approved before being set loose to post but I think you can read without being signed in (not sure though). We're all a bit mad over there but quite harmless ;-)
Thanks for all the info Eileen and Christina.....am digesting it all............very helpful!