GCA Temporal Biopsy result awaited 50mg Pred

[cassie1208]

Suspected GCA two weeks ago put on 60 pred. Now reduced to 50mg and feeling too alert to sleep more than a couple if hours.

How long can I expect to stay on high dose if test is negative?

Just wondered what what to come in your experience.

I have had PMR fir 3 years and before this was on 5mg.

Should I be having regular blood tests?

Thanks

[SheffieldJane]

Hi cassie 1208, Sorry this has happened! I feel as if I remember you from before. Welcome anyway. From what I have picked up, your diagnosis will be mostly based on your presenting symptoms. The biopsy may well come back negative and you still have the disease because a) You are on high dose steroids and b) They have to Test the exact part of the temporal artery that has the disease. They can only tell you that you definitely do have it, not that you definitely don’t, if that makes sense. I would be comforted that I was safeguarding my precious eyesight in the meantime.

How are you? It must be pretty overwhelming.

I am at your sort of dose for PMR after 3 years and kind of dread this happening. Take care and let us know how you get on. X

[cassie1208 in reply to SheffieldJane]

Thanks for you reply. I have put life on hold for now as Preds making me feel spaced out. The hunger is something never had before even after a meal I feel so hungry but trying to eat healthily.

Should get biopsy results soon but I realise that a negative result it not all good as Leeds dusguuse the symptoms I think. Do anything if course to protect sight.

I appreciate your kindness it does help to know you are all out there and such a quick response too. My little dog loves it as she is getting extra cuddles, walks and games. Animals know how we feel and cheer us up!

[SheffieldJane in reply to cassie1208]

They really do! Glad you have your little dog. These things are sent to try us, as my granny used to say. Eating little and often may keep the hunger at bay.

[Marijo1951]

I do sympathise with the insomnia, especially as it will be accompanied by extreme fatigue. I think you just have to accept it and find a way to use the time. I watched a number of old British films on You Tube and did a lot of knitting in the middle of the night. I started on 60 mg on 31st July 2017, was down to 40 a couple of months later and by Christmas that year I was trying to reduce to 25 mg - I couldn't without a flare so started on methotrexate.

[cassie1208 in reply to Marijo1951]

Thanks for you quick reply and you are right acceptance is the key, at first thus is hard but if course it’s a nobrainer where sight is concerned. I bet you got quite a bit of knitting done in the night, actually I love old films so a good idea to go with the flow.

Best wishes

[Marijo1951 in reply to cassie1208]

Yes, it was better to get up rather than lie in bed never getting back to sleep. Mind you, I often spent the following afternoon on the sofa.

[PMRpro Ambassador]

Having a negative biopsy doesn't mean you don't have GCA, it only means they didn't find what they were looking for, the large cells with multiple nuclei. OTOH, a positive biopsy is 100% certain it is GCA. If it is negative they make a clinical decision based on the symptoms and the response to pred. But really - if you've had PMR and then develop GCA-type symptoms you do have to take them very seriously even though it is very disappointing.

What were the symptoms - and has the pred made a significant difference?

[cassie1208]

Explained well thanks it’s good to have knowledge on what’s going on. 10 days ago I had severe jaw ache when I chewed and tenderness around ear went to emergency as I knew risk if GCA when have PMR then medics leapt into action saw rheumy tests then biopsy. I am impressed by it all tied up and awareness by health staff is thourough and fast, here at least that is the case hope same for everywhere. Put on 60mg now said reduce to 50mg where I am now. Jaw pain and tenderness went after 12 hours on pred so makes me think could be GCA we will see

[cassie1208]

Please would you let me know if I can eat grapefruit and it’s juice while I am in Pred. I heard a rumour that not compatable.

[PMRpro Ambassador in reply to cassie1208]

fda.gov/ForConsumers/Consum...

pharmacytimes.com/publicati...

The second links mentions prednisone and prednisolone as having small or negligible interactions with grapefruit and its juice and the text suggests that that sort of level doesn't mean you can't have grapefruit juice - just don't drink a litre or two a day!

[cassie1208]

Thank you so much for taking time to send research I will find it interesting