I have a TAB booked for this Friday. Hospital says I must have a Covid test 72 hours prior (so tomorrow). Bookings clerk says testing team have been notified by email (twice), but I have not heard anything and there is no number to ring - all so stressful. On top of this, the Rheumy said not convinced I have GCA as have some symptoms that tie in and others that don't so, bearing in mind all that I have read here and elsewhere about the urgency of the TAB after starting Pred, I wonder if all this is worth it to go ahead and have the TAB after 26 days of steroid treatment. Rheumatologist has assured me that he is 'convinced' that if I have GCA, there will still be signs of it. What should I do next!? I still have head pain, pressure at temples and along cheek bones from 'apples' toward my nose both sides?
advice please!: I have a TAB booked for this Friday... - PMRGCAuk
advice please!
Any success since posting?
I suppose you can chase again first thing in morning - but after that it’s pointless really - unless you can contact Rheumy Dept rather than booking clerk to push for test.
I managed to get hospital switchboard to put me through to drive through testing. I have a test booked for this afternoon. I am concerned because my headache was quite bad last 2 evenings (over right temple) but I reduced from 60 - 40 mg of Pred 5 days ago so this might be connected? I’m still losing weight and tinnitus troublesome. Unsure who to ask - should I phone Rheumatology?
Glad you’ve managed to get test sorted.....and yes ring Rheumy Dept, certainly sounds as if 40mg is too low.
Please keep us informed.
Glad to see you’ve managed to get a test today.
Initially withdrawal symptoms when reduced from 60 mg to 50mg, pain controllable with paracetamol. Then GCA flare, initially pressure nose and back head, then spot pains. So back up to 60mg with similar symptoms headache, sore scalp, pressure nose and head, to yours, which are gradually decreasing at higher dose ( 8 days and counting).
I have side of head pain now but have had front of face (around nose( pressure. My head pain is not severe, feels like it’s more near surface aNd affecting scalp - does this tie in with what you have experienced?
When started flare ( Dr thought pressure headache, but PMRpro and Rimmy, both said flare) had extreme pressure nose ( felt like wanted to explode) and to back of head. I’m new to GCA ( c. 6 weeks diagnosed) so went along with Dr.
Once increased dose back 60mg, head pain vary unpleasant to annoying, often feels like a patch pain, along with tender scalp. As, said has been improving, often now feels like scalp is separate from head only. Things can be difficult to describe, hope this helps. Everyone’s symptoms seem to vary though.
Re: GCA symptoms, came across this thread today, which may or may not be of use to you
healthunlocked.com/pmrgcauk...
Sorry don’t know how to post as link, did as link automatically.
That is a link - what did you want to do that you couldn't? If you want a title you have to copy and paste from the post title itself
"GCA stories - what our symptoms were like"
Sorry, when first copied it to thread it was not a link, but when posted, it created link automatically, very clever, so should have removed last line of post re: link. Sorry for confusion!
OK - just wondered if you wanted to do something else - to be honest it annoys me that the automatic link makes no reference to what it is about!! If it doesn't go blue it won't work directly of course but you can see what it is about. The link has to be added with spaces before and after - which is the main reason people can't get them to work!!!
Thank you - I have read and saved that thread. All very interesting, not least because some people's headache symptoms did not resolve right away with Pred. The Rheumy I saw was telling me that I should be feeling like (quote) 'a new woman' - what I am actually feeling like is getting a new body - or at the very least, a new head!
Unfortunately, my symptoms diary only started 2 weeks after taking PRED, but from memory (written 2 weeks later) I had some improvement in first 24 hours, with pain levels down to 2/10, previously had hit 12/10. Maximum pain level for next three days 2/10, my notes then suggest some minimal headaches max. pain 1/10.
Certainly, a new head would be nice, without moon face and throw in a body, without tyre around middle, would get my vote.👍
I too had improvement in face/jaw pain after first dose. Occipital headache completely resolved after first few days. Headache symptoms getting bettergradually - but not gone after two weeks. Since cutting down on prednisolone, they are back but no return of face/jaw/occipital - other than the pressure on cheekbones/nose area which is not the same as the pain on chewing that I did have. I wish I had written everything down! I've never really had a 'terrible' headache with it though.
I reduced dose of PRED after 2 weeks to 60mg, from my notes was still some residual headache at that time, pain under 1/10. Wish I’d done real-time diary!
Many don’t have ‘terrible ‘ headache, I don’t really remember the pain, just that I don’t ever want it to return!
The first place I lost fat from when I went low carb was the spare tyre around my mid-riff! The next was from my face - not really moonface but decidedly chubby 
Fat has redistributed around middle, on lowish carb diet ( I.e. too much fruit, bananas and root veg. to be truly low carb.), but struggling not to loose too much weight, down about 9lbs.
Would be nice if could redistribute to arms, bum and legs which looking bit stick like.
Very Cushings ...
Indeed!
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