I have taken steroids for PMR for almost a year, and was down to 9mg. This week I had a slight headache and pains at the sides of my forehead, so forced myself to get checked out by my GP. The pain is not in the temple area, which he said felt OK, and the jaw does not hurt nor the scalp. He doesn't think it is GCA, but has upped the dose to 40mg until I see him again in a few days, just in case. Anyone had anything similar? It's my eyes I am worried about, and I would be a real coward if a biopsy was suggested. Thanks in advance for any ideas.
PS my blood levels for the 2 tests are reasonably low now: 7 and 15.
Herbo, yes I went through this the last few weeks, though I had stiff jaw suddenly when I woke up on morning. Not head senativity and just a little pain. Dr thought it was TMG, (all of a sudden??). I am schedualed for a CT scan Thursday. I was increased from 2.5 everyother day with my pred. to 10 as because my pain is all back. Will let you know what happens.
If he doesn't think it is GCA - why has he upped the dose? He must feel something is going on. Mind you - for a GP to react that is unusual and to be commended, it is usually the other way round!
There are other causes of such pain but at least by putting you on a higher dose of pred he is testing the water as well as safeguarding your sight. Have the pains gone away? If it is GCA they would improve quite quickly whereas other causes might persist longer.
Should also have said that if the pains get worse or you get any visual signs go back to the doctor as if vision is being affected you may well need an even higher dose of pred.
Hi all have been reading your posts and could uou tell me what is TMG thnk you
My Rheumy did tell me when he hesitantly agreed that I have PMR.....in case I should get a severe headache at the sides of my forehead, I would need to take 60 mg of Prednisone right away and head out to the ER.
Herbo, if your symptoms are due to GCA, then you should experience very fast relief from those new symptoms. A slight headache could possibly be from a little virus or infection hanging around, but always wise to get it checked out as far as PMR and the linked GCA are concerned.
Although I didn't have a biopsy when GCA was diagnosed, I understand from everyone I've come across who has experienced biospy that it was a very simple procedure that they needn't have worried about beforehand.
If you still feel worried about your eyes, you could make an appointment with a good optician who will check your eyes for reassurance. I had my routine 6-monthly routine appointment with my excellent ophthalmologist yesterday (I have glaucoma) and during the examination he commented that there was no sign of GCA - still comforting for me to hear that even though I've been in remission for two years.
Good luck and do let us know how you get on.
Temporomandibular Joint Disorder. Jaw is stiff and mounth does not open wide. Right now for me, HArd to brush in the back of my mouth and eat anything you open wide for.
EileenH i have been on pred. 14 months and up to 40 mil. got down to 2.5 everyother day now had to go to 10 again. Mt bllow rate was 54 3 weeks ago been been high as 78 low only 43. Are my number normal or high?
My rheumy said that I had a thirty per cent chance of getting GCA before I started pred and a zero per cent after I started taking it. From what others say my rheumy is not quite correct. When I first went to him he felt the back of my neck and told me I did not have GCA. I had said I had not been having headaches but it did seem his neck check confirmed no GCA. Was this also rubbish?
Yes my Dr said she really did not think it was also, but I insisted on the scan if necessary I will have the biop. It is my body and I have seemed to get anything you could get. Will let you know.
Thank you for your help. Yes- I trust him as a good GP. He was exercising caution, and asked me to return on Monday. He doubted it was GCA, especially as my CRP level is 5 (down from 77) and the ESR level he took then was 15. The headache and pains have gone, so he will help me over whether it could be GCA or was just a type of headache not associated. I guess I will go back to 9mg (if you can jump down from 40g a day for 4 days) with the option of upping the dose if it happens again. I had my eyes tested recently and cataracts were not discovered. Thanks again.
The dose of pred you get for PMR should never be that high - 15-20mg is the nornal sort of starting dose and it isn't enough to stop GCA developing and even less likely to do so as your reduce. And what did the BACK of your neck have to do with GCA? You can have GCA in other arteries as well as the temporal artery but once it gets to the temporal artery there is the likelihood if it also being in the arteries supplying theoptic nerve - and that is where the danger lies. Once the blood supply to the optic nerve is stopped your sight is at risk.
I have PMR but I also had a few of the GCA symptoms - claudication in arms and thighs, dry non-productive cough, scalp pain (which disappeared again) - before it was diagnosed. I later had some double vision whilst on pred and the rheumy here raised the dose again.Not to the very high doses but when you develop visual symptoms it needs hitting hard to reduce the swelling in the arteries fast to avoid loss of vision, which is irreversible once it happens.
I'd love to know what he was looking for at the back of your neck - because it is something I have never heard of before.
He felt slightly to the side of centre of my neck and then said that's alright! I assumed he could feel an artery or something. What annoys me is that if any symptoms of GCA became apparent after I started pred I would have assumed it was something else and not asked for it to be checked out as GCA.
At the risk of sounding opinionated - that's rubbish ! You cannot diagnose GCA like that - unless he also walks on water maybe?
I am sure he walks on water, at least he thinks he can!! Goodness knows how some of these people get away with it. I had just been diagnosed with PMR by him and I was in no position to disagree with him. Frightening isn't it?
Eileen I need your advice I wrote a couple of months ago. I have PR with GCA. I have been on pred for over 4 years but came off them entirely in May. However the pain and stiffness all came back and in August I went back on the pred 5mg per day. I feel fine and my last blood test shows ESR 17 (which is the lowest Ive ever been). Should I start coming off the steroids now, very slowly? Your advice would be appreciated
Is your GP willing to manage you? And send you elsewhere if you show any signs of GCA?
Because I wouldn't be wanting to see him again any more than I ever wanted to see the ignorant and opinionated creature I saw who couldn't diagnose PMR after a textbook presentation and response to pred. And I never went back.
She is a junior GP but seems quite sensible although she knows very little about PMR. Sounds like your guy and my guy are related! The frightening thing is my guy also lectures on rheumatology. Perhaps that is why we have some of the rubbish suggestions we keep hearing about, he is training others!