So my rheumatologist had had my biopsy looked at by her major hospital and they confirmed also the giant cell arteritis diagnosis. However after being on 80 mg of prednisone 9 days I still have some symptoms with pain in my right Temple. Since that is such a high dose she told me to go back down to 60 and to see a neurologist because while I have confirmed GCA there could and very well may be something else going on also of a neurological issue. Problem is it takes about three months to get into one of them but I guess I have to do it. Meanwhile I slipped and fell on my kitchen floor all the way down hard on my bottom and can barely walk sit or stand. I have a compression fracture right around the waist so now I'm dealing with that on top of everything else. I went to the ER had X-rays but they said if it wasn't better in a week to call Orthopedic so I'm going to be on the phone with the orthopedic doctor tomorrow. You know when it rains it pours at least for me!
Biopsy confirmed : So my rheumatologist had had my... - PMRGCAuk
Biopsy confirmed
Oh dear Twriller you certainly are in the wars. So sorry to read that you had a really nasty fall. It is also such a shock to the body too.
Yes it’s a good idea to see a neurologist.
Maybe your GP or rheumatologist could write a letter or send a request for an earlier appointment for you. It won’t harm to ask. Particularly as you have diagnosed GCA..
In the meanwhile, keep your pecker up and know we are all here pulling for your quick recovery.
YuliK 76 🌹
I found even on 80mg it took about a couple of weeks for all head pains to disappear - although the pains maybe from the biopsy if it was done that side.
Try 60mg, but if things get any worse, get back to Rheumy - did she tell you how long to stay new dose ?
Till I see her again which is in 2 weeks. The thing is the pain doesn't come until late afternoon and evening it's almost like when the prednisone is wearing off. I don't know it's none of them bearable pain it's a weird feeling that I can feel like the blood flow going up my temporal artery and then splitting into the different arteries in my for not forehead but side of head
Hi, if it comes on as you describe, then you might be correct in thinking it’s the Pred dose wearing off.
I didn’t have a biopsy (not needed - obvious it was GCA) so I can’t comment on the after affects, but I can’t say I’ve heard that particular one mentioned before.
Is there anyway you could speak or email Consultant or her office for advice, if only to put your mind at rest.
Yes I had correspondence with her earlier this week which is when she told me to go down to the 60 but I know she's also not going to be satisfied till I see a neurologist to rule out possibly anything else and like I said the problem with that is it could be awhile and you don't just walk in there and get answers I'm sure it means lots of tests. If I just could have got all the pain resolved with the prednisone I'm sure she would have accepted that it was all from the GCA and that was it. And who knows I don't even really know maybe there is something else going on to
What, or why does she suspect something else is going on?
If she’s just going on your reaction to the meds perhaps she should have given you a bit longer at starting dose.. as jinasc says sometimes it takes a bit more for some people.
As far as I know, yes she is basing it solely on I'm not having the typical success that you should have on the prednisone. I'll tell you though and I've told her that there's nothing typical about me that's the problem!
at this point I guess it would be okay to see the neurologist and just to see if there is anything else or at least rule it out. I did have a brain CAT scan in February and it was okay. I'm sure this pain is not inside my skull it's on the outside it's exactly where the temporal artery is so I really don't even know what else it could be.
Well I guess all you can do is follow her advice until you see her next. But I would suggest you keep notes daily, so you can tell her actually what has been happening. .... and good luck!
Like Twriller I had problems at the side of the head that the biopsy was done on. It very much affected my vision for a long time before eventually wearing off. That is why I feel that ultrasound needs to come to the fore and biopsies shelved. In fact the next time I see my Consultant, which won't be 'til the New Year, I hope to raise the matter given the opportunity.
Make sure you are getting plenty of rest, I think the biopsy takes it out of you, particularly if you were feeling very unwell before
Triller,
Not everyone's GCA can be held at 60mg. Yes, this is the normal dose, but for some people it is not enough.
As you will see DL took two weeks at 80mg for all the pain to disappear. Did your Rheumy try 80mg?
Sometimes, it can take up to 100mg to settle it down. Mostly this is done in hopsital intravenously.
Or have I misread something?
What's on 80 for about 7 or 8 days but I told her I didn't really notice much difference between the 60 and the 80 so since that is so high we thought let's just drop back to 60 for now and we'll see. Meanwhile I haven't gotten my flu shot yet and I'm afraid to go anywhere too much since my immune system is compromised and people are really starting to get sick these days ugh.
OUCH! You are having a rough time! Hope things get better for you!
Oh , you poor thing .
I am sending you really big bear hugs , because as they are virtually , it won't hurt to receive them!😋
Take extra special care , and let us know your progress xxx
Thank you so much, yes I can use all the hugs wishes prayers whatever anyone has to send! Greatly appreciated!
Many, many more hugs back to you , a ready supply is always here if you need them !😘
3 months for you - 3 years + in Northern Ireland
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