biopsy

[Libertylane]

Biopsy negative. Was on prednisone for a 6 days before. Still have some symptoms Esr 30. Was 10 last March. CPR 6.4. .9 in March. Had 4 cortisone spine injections before the 30 and 6.4 and wonder if really was higher. Esr went back to 10 and cpr .9 after two days pred last week. Pred is killing me but I worry about stopping. It’s a dilemma. What to do ? Haven’t talked to rheum about results yet. Rolling the dice if I stop pred I guess. Just call me miss anxiety. Really appreciate this board. Really good outlet and good advice and vibes

[SheffieldJane]

Well that is good news to cling too. Get your Rheumatologist to reassure you about its accuracy. Also make a note of your current symptoms. Mine fly out of my head when I am with a doctor. You wouldn’t stop Pred suddenly, maybe half a tablet a month to zero, unless your Rheumatologist thinks that you have PMR. You’ve been through a lot of nasty procedures. It just shows how much you want to get well.

[PMRpro Ambassador]

Wait until you have spoken to the rheumy before stopping the pred as you do appear to still have inflammation and a negative biopsy doesn't mean it definitely isn't GCA - it means they didn't find what they were looking for and the rheumy will make a decision based on the overall clinical picture, symptoms and markers and response to pred so far.

If he decides to stop or reduce the pred to PMR levels now you can do that quickly down to 10mg for PMR doses but if you are to stop pred you can do that quickly right the way to zero after only a week to 10 days,

[SnazzyD]

Hello. I’d wait to see the doctor before changing anything because they should weigh up all the evidence and decide if you need to keep going with Pred. As you’ve heard before here, a negative biopsy is not necessarily a true reflection of what’s going on in your arteries. I know it is ultimately up to you what you do, but your emotions and anxiety will be playing into the decision process which may cloud your judgement. Ask them to explain to you their thought processes that lead them to their final conclusion and then go forward from there.

At the beginning it often feels like Pred is killing you but it isn’t really; it’s just the anxiety and feeling out of control.

[Grammy80]

What good news, what a great starting point. Your rheumatologist will tell you your next step~! I'm pleased for you and hope you can 'exhale'~! This is a great forum, isn't it? Glad you are here~!

[Libertylane in reply to Grammy80]

I don’t know what to do. Still having symptoms like thrush sore throat and ear and very dull headache with temple tenderness. On the other hand blood sugar higher when wasn’t before, eye pressure higher in one week. What to believe? Haven’t even talked to rheum and that seems like it might be awhile. Very frustrating. Feel kind of abandoned. Have to try and relax. I know many people been there. I am so sensitive to medicines

[Jackoh]

Maybe you could ring the rheumatology department? Certainly here in UK we can sometimes access a rheumatology nurse who can give advice until we have our appointment with the Rheumatologist. Hopefully it won’t long before you see your Rheumatologist but as others have advised now is not the time to stop your pred. Wait and seek advice from your Rheumatologist. In the meantime try to accept the fact that a lot of your anxiety is probably due to the pred, it is however saving you from any other nasties and keeping your inflammation down. It’s a two edged sword at the moment, I’m afraid. Xx