This is my first post and I would like to say how helpful and informative I have found the blogs and replies. So thank you to all contributors.
From reading other PMR stories I am aware that I have got off relatively lightly with this condition since the prednisolone has worked for me.
I have had osteo-arthritis for a number of years and I know now that I had PMR from January 2011 but the GP sent me off on a few wild goose chases ( eg to a physiotherapist for exercises for frozen shoulders) before I was diagnosed and started the steroids and Alendronic Acid in September 2011. It is interesting to read how other contributors to this site are monitored since I just get a monthly prescription delivered to the local Boots. I phoned the surgery after 6 months and asked whether I should go in for any monitoring or a blood test and was told it wasn't necessary but just to keep to the reduction timetable sheet I had been given.
I was down to 3mg in the summer but had a flare up and increased the dose back up to 5mg a day. I am now back down to 3mg again and apart for the usual sweats etc. I am getting very regular (sometimes daily) headaches.
I have always had classical migraine starting with the aura and other visual disturbances but these are similar to migraine headaches that just creep on me without warning. Once the headache is established and I feel nauseous it feels just like a normal migraine (if there is such a thing!). I don't have any jaw pain or problems with my eyes so am not thinking of GCA.
Has anyone else experienced something similar. I have not been to the doctor since it is a large, anonymous group practice and I already have a prescription for Imigran.
Hi Rawnie I to find this site informative as when I was diagnosed with PMR I knew nothing of the condition or knew anyone with it. If you look on my site you will see my background.I am now on 2mg of pred and feel ok apart from hot flushes and having to pace myself. I to get the odd migraine with sight disturbance. However after having PMR for one month I developed GCA. I had none of the classic symptoms that other people seem to get as a warning. I just happened to mention to my rhumertolgist that I felt stiffer than usual. He sent me for a pet scan the next day and it was confirmed I had developed GCA. It was a bit of a surprise and all very worrying.
I'm sorry to read you do not seem to have a one to one with a doctor at your practice but perhaps if might be a good idea to see a doctor just to check things and perhaps have a blood test. I hope my experiences will be of some interest and wish you well.
From Mossie
Well done on reaching a low dosage of preds and managing your PMR so well. Regarding the headaches I would certainly get these checked out. If you feel unsure that you will get the attention from your GP practice then I would recommend going for an eye test at a good optician preferably one that has an opthalmologist just to put your mind at rest. You do not give details of your daily headaches - whether they are all over or just one-sided. I do not want to be an alarmist but GCA is so serious that you do need to rule it out.
Just to say that I experience these types of headaches too, but never had them before I had PMR. With me there is a pattern though. I had them a lot when I experienced a flare but they stopped when the pred was increased again. Now I am back to slowly reducing, I get them in the first week of dropping the dose, particularly if I overdo it, but they tend to go away after that until I drop again. I told my doctor but because there was no visual disturbance she wasn't worried. The headaches are completely debillitating when they happen though.
It is appalling that since your PMR diagnosis over a year ago you have been left by your surgery to manage it completely on your own! That said, congratulations for doing so well.
You're obviously aware of the risks of developing the linked condition, GCA, but, as a PMR sufferer and migraines aside, you definitely need to get any headache/nausea problems checked out, especially as you mention having experienced a flare in your symptoms a few months ago.
Both head pain and nausea (vomiting) were among my symptoms before being diagnosed with GCA. In all probability I succumbed to GCA because during the previous year I'd suffered from undiagnosed, therefore untreated, PMR which left me bedbound and travelling to rheumatology appointments by ambulance and wheelchair.
So please don't ignore the risks. There must be a GP in your practice who will listen to you - in any case download a copy of the British Society of Rheumatologists Guidelines for the Management of PMR and take them to whoever you see. Hopefully, GCA will be ruled out but far better to be sure than risk the loss of your eyesight. Good luck!
I am shocked that you have not had regular blood tests. My progress has been similar to yours, though fortunately I don't have headaches, but I do have blood tests every 4 - 6 weeks and a GP follow-up appointment to assess progress. Blood tests can detect 'blips' and if there's a big increase in ESR it can signal the possibility of GCA - or so my GP told me when I was a bit worried a few weeks ago - my ESR was OK.
Also really shocked your GP has left you on your own with this -- you need blood tests, you should have had a baseline DEXA scan when starting prednisalone; you should be on high-level calcium supplements. And totally agree with Celtic -- ANY headaches that anyone with PMR has MUST get checked by a rheumatologist. I would print out the guidelines on treating PMR/GCA for your GP (on the PMRGCAUK main website) , note that you should have been having these monitoring tests, and ask for an immediate and urgent referral to a rheumatologist to have both the PMR checked and the headaches considered. It may well be that the headaches are migraines and not related at all to GCA but they should be urgently checked out as loss of sight can come on suddenly and be irreversible.
Hi Rawnie,
Looking at what all other members have said so far, I totally agree with their evaluation of your circumstances regarding your illness and the rather casual way the Practice is dealing with you. Do try and arrange to see a GP on a regular basis. You need a 'one to one' when it comes to your care and you certainly should be referred to a rheumatologist because of the headaches you are having. No chances should be taken if there is the slightest possibility of GCA developing.
You have done so well so far, but do make sure those headaches are are migraine - not something more sinister.
You are not alone about being left on your own by GP. I had GCA diagnosed in March 2010, and initially I saw a Rheumatologist, but six months ago, he thought my condition was under control and asked my GP to monitor me on a regular basis. I made an appointment to see him, only to be told it wasn't necessary to see him regularly. At the request of my Rheumatologist I have blood tests every six weeks, the appointments I make myself with the nurse, but I never have any feedback of the results from the GP. Several times they have been elevated ESR 45, GP said ok, it could be a virus. Except for changing GP what else can one do?
Hi Rawnie, posting from the United States, NYC. I was diagnosed with GCA in May 2012, with terrific headaches, nausea, dizziness.
I have had migraines since '97, unusual since I was 47, when I was first diagnosed with them. I have taken many classic migraine medicines, over the years, most of which helped. I developed some reaction to topamax after a year's use and had to go off of it. That was the best. I had what you have described.
They were debilitating and without the medication I would have been unable to work. After the GCA diagnosis and on 10mgs lowered to 5mgs of prednisone. I still had the headaches. was hospitalized with them. diagnosis is a dual headache. one does not trigger the other, they have said, but I do get both at the same time. Am using neurontin for migraines, does not seem to interact with the medrol. Have also tried the herb butter burr,(recommendation from my migraine specialist who has been written up for her migraine treatments) which is as good as the triptiphans, which I used to take. (reacted to them, so stopped them). Am seeing a migraine specialist, a neuroloptomologist for the GCA and some eye damage. They are both in agreement on this treatment. Use nexium for the nausea. I also take an aspirin a day to prevent stroke and heartattack. I hope this helps. It seems both come at the same and that makes it painful and difficult. Hope you get some relief. all my best, wishing you good health, Whittlesey, U.S.
Yes I'm the same. I get headaches regularly, sometimes all day daily for several weeks at a time so most of the time in fact I have a headache of some description. Sometime they are what I consider mild, so just live with it. Often though they are pretty bad to migraine pain so then I resort to tablets of varying degrees. I find if the headache is bad and continues for several days and I have taken daily doses of pain killers then I reach a point were the headache just is so bad I need to lie down and suffer it out. During this extreme phase I do not take any tablets. The bad headache can last for 2 or 3 days before it starts receding and though this time I leave find I must off the tablets as I am convinced to many tablets causes the pain to be greater and extends the very painful time I have the headache. My handbag contains a mixed supply of Paracetamol, Ibuprofen, Migraine etc. as I try various types and strengths but to be honest when they are bad not much seems to work.
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