Struggling with GCA!!
Posted , 6 users are following.
I wrote on here a few weeks ago just after being diagnosed with temporal arteritis.. i was on 30mg pred for 3 weeks, which has been put up to 40 as my bloods arent responding as well as they should.. levels still too high!
Although my ta symptoms have slightly reduced i still get throbbing in my temples but not as bad.. my latest problem is 24/7 headaches. I wake up with a headache and go to sleep with the same.. i have no relief and its agony the pain moves around my whole head behind my eyes down my neck etc. Is this ta or possible side effect from pred? Also i keep getting a 'dead arm and leg' is this related?
Im only 22 and seriously doubting how much longer i can cope.. every day is a battle and i feel like im losing
1 like, 9 replies
marilyn46889 meganaw1991
Posted
I think all your symptoms are from GCA.
Are you seeing a specialist??
I think you should have a infusion of prednisone and the other drug that is a antagonist. Can't think of the name. That gives the disease a real "boost"
You can have a huge dose that way and then gradually reduce. I'm so sorry for all your pain.
Please see a rheumatologist.
This might help.
meganaw1991 marilyn46889
Posted
Many thanks!
Mary_J meganaw1991
Posted
I was diagnosed with GCA last year and was put on 60mg of Prednisone straight away. Also Aledronic acid, lomeprazole and soluble aspirin. I do feel that your dose is too low, though I am not a professional but have experience with this condition. My symptoms were eased within 2 days on the 60mg. Please ask your Dr to refer you to a rheumatologist, I was, immediately, as I was admitted to hospital when I was diagnosed. I am 65 and you are so young. Go back to your Dr asap. It is so important that you are put on the correct steroid dose to preserve your sight!!! Please let us know how you get on. Love Mary xx
meganaw1991 Mary_J
Posted
I was on 30mg for about 3 weeks but my inflammation markers kept going up so last week I got put up to 40. I'm not convinced it is doing anything as my headaches seem to be getting worse daily.. My GP has been fantastic so far I have been seeing her weekly and she has been keeping on top of things, that said I'm doubtful that I would get admitted to hospital as where I live the hospital isn't very good and they seem to just send you home even if you go to a&e.
Will update later. Thank you for the information xx
EileenH meganaw1991
Posted
meganaw1991 EileenH
Posted
EileenH meganaw1991
Posted
You do need to be under the care of a specialist and if you are not yet with one your GP should write a letter for you, call the hospital and tell them he is sending you as an emergency GCA patient who must be seen immediately. Urgent referral is NOT enough - that takes weeks, sometimes months. Urgent just means to be seen sooner than the 18 week or so period that is currently the so-called limit.
If you are already under a specialist, call their secretary and ask for advice. You need someone who knows more than a GP at the moment.
Good luck - and keep fighting.
meganaw1991 EileenH
Posted
I am seeing my GP again today so I will push for a referral.. yes I think that is the problem I have become immune to penicillin due to the amount of time I have been on it so my body is quite resistant to medication now..
I will go up to the hospital if nothing happens today, as I think they have decided on GCA straight away without exploring any options and I personally feel something else is going on inside my head!
Thanks again xx
Lee-Colorado meganaw1991
Posted
my ruhmatoligist said that the only marker that counts is the crp so immediately ask your dr. what your crp count is! when i relapsed in may i was placed back at 60mg. i am male and 70 yrs old and you can search my screen name for entries. eileen is the queen here imho.
do your jaws hurt and does it feel like knives being dragged over your scalp when you comb your hair? go to top of the page and search for gca under professional references. the dose of pred is calculated by your weight.
ty eileen. 5. ="" my="" ruhmatoligist="" said="" that="" the="" only="" marker="" that="" counts="" is="" the="" crp="" so="" immediately="" ask="" your="" dr.="" what="" your="" crp="" count="" is!="" when="" i="" relapsed="" in="" may="" i="" was="" placed="" back="" at="" 60mg.="" i="" am="" male="" and="" 70="" yrs="" old="" and="" you="" can="" search="" my="" screen="" name="" for="" entries.="" eileen="" is="" the="" queen="" here="" imho.="" do="" your="" jaws="" hurt="" and="" does="" it="" feel="" like="" knives="" being="" dragged="" over="" your="" scalp="" when="" you="" comb="" your="" hair?="" go="" to="" top="" of="" the="" page="" and="" search="" for="" gca="" under="" professional="" references.="" the="" dose="" of="" pred="" is="" calculated="" by="" your="" weight.="" ty=""> 5.
my ruhmatoligist said that the only marker that counts is the crp so immediately ask your dr. what your crp count is! when i relapsed in may i was placed back at 60mg. i am male and 70 yrs old and you can search my screen name for entries. eileen is the queen here imho.
do your jaws hurt and does it feel like knives being dragged over your scalp when you comb your hair? go to top of the page and search for gca under professional references. the dose of pred is calculated by your weight.
ty eileen.>