How long does it take for symptoms to dissipate?

[vsapey]

I started on 15mg a week ago, I noticed some improve within a day or two. I am still getting some temporal headache symptoms, which is a worry!!! And soreness in one arm. A really great improvement as I can now function. Do you think I am on the right dose? Does it need to be higher?

[DorsetLady PMRGCAuk volunteer]

Hi vsapey,

Glad to hear you are getting some relief from Pred. Did you have headaches when you were diagnosed? If so, wonder why PMR was diagnosed and not GCA.

If you do actually have GCA, then 15mg is not enough, even though the doctor may have thought if caught soon enough it would be. . Think you need to speak to him/her explaining your current symptoms and getting confirmation of diagnosis.

Good luck.

[vsapey in reply to DorsetLady]

Thank you for the advice

[vsapey]

PMR symptoms start in mid July, headaches and jaw ache about 2 weeks ago, have been on steroids 15mg a week. I have MS and connective tissue disease, hadn't heard of PMR/GCA until the osteopath I saw to try and help with pains suggested it. In turn I had to suggest it to my GP. It is only from reading posts on this site that I have learned more. So thanks everyone.

[PMRpro Ambassador in reply to vsapey]

If you have temporal headache and jaw pain you need to be referred as an emergency (not urgently) to a rheumatologist and almost certainly need to be on at least a slightly higher dose - some parts of GCA will respond to a moderate dose but to be safe a higher dose is used to reduce the inflammation quickly and reduce the risk of visual loss. GCA is beyond the average GP, they generally just don't have the experience to identify problems.

[HeronNS]

Did you get your urgent appointment? If not you might consider going to emergency department of hospital, certainly if you get any vision disturbances. Please let us know how you get on.

[vsapey in reply to HeronNS]

GP is requesting urgent appt, I am seeing her again on Monday. GCA symptoms are not too bad, pain in temples come and go now plus I have jaw ache at times and tender scalp. Has got better with 15mg of steroids. How worried should I be?

[HeronNS in reply to vsapey]

I have no personal experience of GCA. However what I read here, and what my ophthalmologist told me, was that GCA should be treated as seriously as a heart attack or stroke. So if you have no visual disturbances it should be fine to wait to see the doctor, but if your vision is disturbed in any way before your appointment it would be a very good idea to go to emergency. Time is of the essence to preserve sight. So, please don't worry, just be alert. You know that if anything happens a high dose of prednisone will preserve your sight, not like someone for whom this might come out of the blue. And if your symptoms are easing with the 15 mg I'd take that as a very good sign.

All the best. Do let us know how you get on.

[PMRpro Ambassador in reply to vsapey]

It isn't urgent you want if there is a suspicion of GCA - it is classed as a medical emergency the same as a stroke or heart attack would be. In the UK system an urgent appointment is one that will be seen sooner than routine and can still take several weeks depending on the local waiting times. Unfortunately there seem to be GPs who are totally unaware of these facts - any of them and there is a shortage of rheumatologists so waiting times are long. Gone too are the requirements of 18 weeks maximum from request to treatment - and the waiting times are increasing week by week in some areas.

If you have any more severe symptoms, and absolutely if you have ANY visual symptoms, even if it is very fleeting, PLEASE don't wait for Monday when you can point this out to your GP and ask them to phone the hospital but go immediately to an A&E department at a large hospital and be insistent about being taken seriously.

[cjatthesea]

I was diagnosed with GCA and PMR about 21 months ago. Pain was not constant. Actually had a lot of unexplained pain for the previous 20 months. Had been seeing a GP, Ob Gyn and an ENT. Several trips to the ER without any diagnosis. When it became more severe ( scalp pain, jaw claudication dry cough, stiffness, fatigue and occasional temp. ) I finally realized what was happening. Went straight to the ER for a 125 mg Methylprednisolone injection and was started on 60 mg of Pred. It's been a tough time. Lost some vision and hearing early on when I was not given enough Pred. I'd consider it an emergency. CGA is nothing to mess with.

Prayers are with you, CJ

[vsapey]

I saw GP today, I am now on 50mg steroids upped from 15mg because of GCA symptoms. Waiting for rheumatolist appt. so feel more reassured. Thank you for all your replies.