I'm Confused and diagnosed with TA

You have come to the right place to get all the help, advice and understanding that you could wish for - from fellow sufferers who know what you are going through. This site has helped me enormously - suddenly you don't feel so "at sea" - so to speak.

I am a fellow GCA sufferer, also in my 50's - had the same sort of rigmarole in getting the right diagnosis - and the same "instant" relief after starting prednisolone.

After the relief comes the hard part - coming to terms with the fact that it is a disease that doesn't just disappear overnight - I was off work for the first 3 months - but now (3 years later) I am still working - taking it as it comes really - still get very tired, if I am at home I just lie down and have a sleep - at work I find a quiet corner and have a sit down, close my eyes for 10 minutes and then carry on - not ideal of course! The medication comes with it's own contribution to the situation in the form of various side effects!

I seem to remember reading on this forum that Eileen (I think) mentioned at some point that GCA sufferers in the UK are entitled to some sort of benefit?

I think ... don't take my word for it - I live in Denmark.

Anyway - hang in there, and good luck.

i cannot really add to what Janet has already said, only this, PMR/GCA are conditions that for lots of us are hard to get our heads round, why because they are conditions that although not terminal have minds of their own. I read on this forum of some patients who have reduced through the doses of prednisolone with total ease and I wonder why 16 months on I'm still at 9/8.5 with one flare behind me. I also read of patients that seem to suffer every side effect of prednisolone known to man yet I skip around practically pain free. 

I do not suffer from GCA but if I were you I would take it easy for the first few months just to let your body "find itself again" (I didn't mean that to sound so happy clappy) because our bodies have been through and continues to go through a lot until this condition goes into remission.

i think drs do sign gca's off work for that least the first few months anyway, so why don't you speak with your Dr. 

Keep contributing to the forum, all the best, christina 

It sounds as though you are experiencing the expected relief in your pain levels now that you have been prescribed the correct dose of steroid to deal with your symptoms. However, please do not be tempted to reduce your steroid dose too quickly or the symptoms will return.  The treatment does not cure the inflammation running around in your body - it just damps it down whilst GCA (or temporal arteritis) runs its course, and that can take anything from a couple of years upwards.

It is recommended that the temporal artery biopsy is carried out within a week or so of starting steroids, otherwise the large cells they are looking for will have resolved due to the treatment.  However, the bopsy itself is not a totally relieable confirmation of diagnosis, as the large cells can escape the tiny portion of artery removed.  A more reliable sign that the diagnosis is correct is a resolution of symptoms by at least 70% within a few days or even a few hours.

If you return to work at this stage, the stress could mean that it will take longer for you to reduce your dose or even experience a flare in the inflammation which would entail a return to your starting dose to get things under control again - it can then prove more difficult to reduce the second time around.  Although you are feeling well now, that is purely down to the high steroid starting dose - a sort of feeling of euphoria.....I remember it well!  GCA/TA is covered by the Disability Act so do be kind to yourself and give yourself plenty of TLC and rest to allow those steroids to do their job.  I do hope you continue to feel well.

On the right hand side of this page, there is a column headed Related Information, click on either Giant Cell or Poly and when you get to those paages, click on support at the top of the drop down section.   There are links to websites that contain loads of information and people's stories.

Take the time to visit those websites and they will also help.  They also maybe a support group near where you live.

Yes,  I had GCA and it lasted for 5 years, but I do know three people who were in their 50's and their GCA went into remission in just over two years.

There is also an article you can read about benefits, but you need to send me a PM.

Just hang on in there, there is light at the end of the tunnel - the problem is we don't know how long the damn tunnel is.

I am confident that I am headed in the right direction at last.

Just thought I would share a bit of good news.