Flare or nerve pain, or is it the same thing?

[crafty_grannie]

I've had what I thought, and GP and Rheumy thought, was neuralgic pain/headache from the occipital nerve, and I was prescribed Lyrica which doesn't seem to make any difference. The Rheumy said the Lyrica should relieve it in a short time, which it hasn't. After reading Phoenix51's post, I wondered if it might have been a flair as I also have a sore, stiff neck and shoulders and thigh pain, and have been feeling particularly achey and tired. I lost the sight in my right eye as GCA was not diagnosed early enough, and the sight in my left eye is blurry. But I also have cataracts which need to be treated. I have fibromyalgia and I find it difficult to identify what is responsible for the pain. I was diagnosed three years ago (60mg) and I am going from 8mg to 7mg Pred at the moment, slow reduction. I wondered if maybe I need more Pred rather than Lyrica. Feeling a bit confused. Any thoughts would be a most appreciated. Many thanks, Mary.

[SheffieldJane]

Hi Mary. It’s puzzling that your doctors didn’t go for the obvious ie a flare of your GCA/PMR. I wonder if they would try a little more Pred to see if it relieves your symptoms? I would be ultra cautious in your situation and it won’t harm you. This level of dose is notoriously difficult to get down from due to your Adrenal system having to wake up and work for itself.

[DorsetLady PMRGCAuk volunteer]

Hi Mary,

It is difficult to know what pain is attributed to what illness when you have more than one .

From what you’ve described could well be a flare - and the level you are at can be particularly problematic for some.

I would be inclined to try a higher dose for a week and see if that helps - usual recommendation is 5mg added to dose you last felt well - so if ok at 8mg maybe try 12 or 13mg. If it works, you can then drop back down to 9 or 8mg - not 7mg.

Stay at new lower dose for a couple of weeks before reducing again - and maybe try 0.5mg a time not 1mg.

As a fellow mono sighter hope you can get cataracts ASAP and safe to do so.

[PMRpro Ambassador]

In someone with your history occipital headache is surely more likely to be due to a flare of GCA than anything else? And if Lyrica doesn't work - I would suggest the doc should try a higher dose of pred. Or are they of the "headache is in the wrong place" faith? Occipital headache is a classis region for GCA.

[Phoenix51 in reply to PMRpro]

Hi @craft_grannie. Sorry to hear about your symptoms. I am still not sure if my symptoms are due to GCA flare or new PMR or neither but I have taken the advice of the good ladies on here and also Out of Hours Dr and GP who have all said to go up to 40mg ( I had tapered to 10mg). I started yesterday and took second dose today. My symptoms are still there but am hoping the Pred will do it’s work soon. If not I guess I’ll need to be asking what else could be casing the symptoms. When I was diagnosed with GCA in January my pain was occipital and the first gp diagnosed neuralgia. When the pain didn’t go away with tramadol or amitriptyline the second gp sent me straight to A and E. it’s surprising how many medics I have seen, including an A and E dr who told me I was unlikely to have GCA as my pain was at back of head and not temples. I have also been told I’m too young to have GCA which of course I now know is not the case. I would take the advice of the ladies and also discuss with your rheumi if you can. I hope you find some answers. Take care

[crafty_grannie in reply to PMRpro]

Hello Ladies, many thanks for your replies. I have a lot of things on my plate at the moment and wasn't thinking too much about reasons for the pain so it's really my fault that I didn't follow up sooner. I'm waiting for a knee replacement and that is very painful, and osteoporosis in spine and neck is causing problems. Thank goodness for the forum. I've increased dose to 13mg and will see how that goes for a week. It was very sobering to realise it could be a GCA flare. Thanks for your suggestions. I'll let you know how it goes. Mary

[nuigini]

I don't have GCA, only PMR but do read all the posts.

Since you have already lost the sight in one eye and have problems with the other, I'm so glad you decided to increase the prednisone! I hope it works!!

[crafty_grannie in reply to nuigini]

Thanks to those kind people who suggested increasing prednisolone. After two days on 13mg, I still wasn't feeling any better so increased it to 15mg. Made a big difference. I could even identify the osteoporosis pain. I still have head pain rather than headache and I still get pain in my right eye. I saw the optometrist two days ago and he said it might be from the weaker muscles in that eye, trying to work with the better left eye. Depth perception is quite a problem and double images can make reading difficult. Trying to do a crossword can be fun if I'm tired. The boxes jump all over the place. I can't talk to my rheumy till next Thursday which is unusual. He must be extra busy. I'll see what he has to say then.

[Hidden in reply to crafty_grannie]

As long as you feel a little less pain....🌻👍

[crafty_grannie in reply to Hidden]

Hello everyone. I've finally seen GP, optometrist, ophthalmologist and rheumy. After more eye tests the Opthalmologist said there was no swelling and no deterioration in eyes and it was probably muscular skeletal, so I had dropped back to 10mg by the time I spoke to the rheumy. He had no problem with my deciding to change doses up and then down and said I had done the right thing. I'm now following up on osteoporosis in neck.

Many thanks, so glad I found this site.

Mary