IM 43 went to the gp with jaw and ear ache as well as a bad headache which i had for a few day the said i could have cga or prm

[vivvybie]

i also have painful jips knees and shoulders and neck i have been on steroids now for 5 weeks and i have just got a appointment with hospital tomorrow im scared of what they might tell me

[adelle]

All I can say is keep your chin up and good luck at the hospital. I really wish the best for you.

Adelle

[vivvybie in reply to adelle]

ty hunn ill tel you hw i get on

[Celtic PMRGCAuk volunteer]

Hello vivvybie

There is nothing to be "scared" about - in fact where GCA is suspected it is preferable to be under the care of a hospital rheumatologist. "Hip, knee, shoulder and neck pain" are recognised symptoms of PMR, and "head, jaw and ear pain" can be symptoms of GCA.

If GCA is suspected, you have probably been prescribed a starting dose of at least 40 to 60mgs of Prednisolone and if you have exprienced a good response with resolution of a high percentage of your pain, then most medics see that as confirmation of the diagnosis.

Sometimes when GCA is suspected, the rheumatologist may suggest carrying out a small biopsy of a tiny piece of artery taken from the temple area at the side of your head to check for any large cells, but as you have now been on steroids for 5 weeks, that may not be an option for you. Hopefully you are feeling much better than pre-diagnosis and treatment. Do let us know how you get on.

[2watsons]

I you must be very worried , seeing Rheumatogist should explain all to you ,so sorry you have this so young ,i was 71 when fist had P M R NOW 78 and now have giant cell ,have been seeing Rheumatogist since June and slow but feeling better .

Hope all goes well

[vivvybie in reply to 2watsons]

i will tell you how i get on ty for your reply

[Polywotsit PMRGCAuk team member]

Hi there <br style=""> Yes, do let us know how you get on. The chances are that you don't have GCA because of your age. Don't worry too much either way, now you are in treatment your sight will be safe. Certainly if you do have it you are much better off being under the care of a specialist because your age makes you 'untypical' and worthy of a bit of special treatment.

[vivvybie in reply to Polywotsit]

good news they say i have not got it but they dint know what it is they dont know why the swelling s they and my vison is going funny so going for brain scan and told me to get off steroid the doctor talked to me as if i was lyeing about it

i did nothing but cry and all i wanted it to know what i have

[Polywotsit PMRGCAuk team member]

Hi. I can imagine how confusing this is for you. I can also imagine how the rheumatologist might have seemed cross and impatient. However, maybe it wasn't with you - maybe it was with whoever put you on these steroids for an illness that you were never likely to have, without checking it out first. Now they will want to find out what is wrong with you but before they can do that, they have to wean you off the steroids. And they can't do that immediately. On no account should you stop taking the steroids suddenly. They will try to get you off as fast as possible. So you may feel bad during this period because your body has got used to the steroids. Your vision may be going funny because the steroids raise your blood sugar, which in turn draws more water into your eyes, which in turn changes the curvature of your eyes and upsets your normal vision. Don't panic. In time, as you come off the steroids, your blood sugars should normalise and your vision improve again. If you can, put your trust in the hospital - they are now taking your condition seriously and try to feel some reassurance about that.

[Bryonny]

Dear Vivvybie, from your description of your symptoms, I think it important you are seen by a consultant Rheumatologist. My understanding is that blood results may not always have raised ESR and CRP levels (these indicate an inflammatory response which are present in PMR and GCA). I find it frustrating when doctors give the impression they don't believe what patients are saying; patients generally report symptoms they experience and should be listened too. Don't give up, if possible take someone with you to appointments, write down your symptoms and concerns and keep a copy so you can refer back to/confirm symptoms you have described. My mother had all the symptoms you described and had an experience similar to you. If your doctor excludes PMG and GCA ask them why they have excluded this, you can also ask for a second opinion. I hope all goes well for your tomorrow. Bryony

[vivvybie in reply to Bryonny]

bryonny the doctor said i wa to young to have GCA and he acted as if i was making the whole thing up even tho you can see the swelling no the side of my head just want to cry

[Polywotsit PMRGCAuk team member]

A group of research rheumatologists at Leeds University have discovered from doing whole body scans that as many as half of the people who are diagnosed with PMR don't have it. Please watch out for our future PMRGCAuk newsletter which will say more about this. A trial group at Bristol University also found the same thing, last year. Vivvybie, given your age, you are more than likely to be one of these people. You may have inflammatory osteoarthritis, for example, or fibromyalgia, or something else. There are any number of inflammatory illnesses that could be your 'one'. But perhaps what is more important than naming your illness is to find a treatment that is suitable for you. The steroids are not working, and so you must get off them. It will take a while but it is important for your long-term health that you do. Good luck.

[vivvybie in reply to Polywotsit]

steroids are working but the doctor has took me off them now