Will I ever feel well again?

[Kyrenia]

Hi everyone not posted for a while, have been struggling with GCA/PMR and steriods. Not sure which the lesser of two evils. Have felt awful and now realised that working is not an option at this time. I am currently on 35 but any attempt to reduce fails. I now have terrible pains in my groin, bottom and hip, have had to resort to using crutches. Has anyone had any experience of Avascular Necrosis please. Any feedback would be very welcome. I am seeing a Rheumatologist to morrow privately. The NHS one I saw doesn't plan to see me until July!!!

Many thanks.

[Hidden]

And that Kyrenia... is "The $64,000 Question!" Although in today's money, that's about $555,547.00! Take the money and run!!!!

I ask myself that question at some point every day. And I agree, I too do not know which I resent more, the PMR/GCA or the steroid side effects!

I have not heard of Avascular Necrosis.. but wish you the best of luck getting it sorted!

[lesley2015]

Hi Kyrenia

Sorry to hear you are suffering so. I was diagnosed as you with PMR/GCA and put of 40mgs preds - I was working fulltime in a managerial position. That was in Jun 2015 - I struggled to work for about a year, going part-time but with the condition and steroids it was really not possible - bad days were awful and good days were still pretty bad, I believed it was slowing my recovery, so we made life changes and I gave up work.

These conditions, however with might fight them (as I did and many do), they do not disapper over night, they are life changing.

So over two and a half years on, I am reduced on steroids so that in inself makes me feel better, like many not an easy reduction, a few flares where I have had to increase up again. Other medicaitons added, some I have kept others discarded because of side effects. Other conditions have been added so its still an ongoing journey

Each person is different , but you will improve but it takes time and patience and acceptance that for now, your life has changed and therefore you have to make changes.

It looks like you have been diagnosed for a couple of months? if so its early days but once you reduce the steroids you will feel more like you ....... they are a necessary evil unfortunatley .....

I have not heard of Avascular Necrosis so cannot comment unfortuantley.

Not sure if this helps, Oh and lastly I changed my first Rheumy who was really not very good, my current one is lovely so change if you have no confidnence in him/her.

Best wishes

[Kyrenia in reply to lesley2015]

Thank you it’s promising to learn there is a light st the end whenever that comes.

[SheffieldJane]

Sending you virtual hugs for your suffering. I really hope this new Rheumie is a star. Courage!

[Kyrenia in reply to SheffieldJane]

Thank you.

[piglette]

You poor thing. I am amazed that they have not done something sooner for you such as an X-ray even. I have heard that Avascular Necrosis can be a side effect of steroids, although I may be wrong.

[PMRpro Ambassador]

If you have been attempting to work I really am not surprised you feel so bad if you do have GCA - it is a serious systemic illness.

Would you expect to work with proper flu? And GCA is like having permanent flu. The pred is only mopping up the inflammation to protect the blood flow to your optic nerve and reducing the risk of visual loss - the actual disease that causes the inflammation is still chugging along in the background, just as flu does when you try taking lemsip and stuff to manage the symptoms a bit: you are still ill.

These are early days - and still being on 35mg after just a couple of months is quite usual, many would be at a higher dose still. And none of the pred side effects are as bad as the ultimate GCA side effect: losing your sight.

Your hip/groin/buttock pain could well be bursitis - and oral pred often doesn't stop that developing, even at higher doses. Don't assume the worst scenario - you've been googling hip pain and steroids haven't you? You have told your GP haven't you? He could have sent you for a plain x-ray for a start. It doesn't show AVN in the early stages but does provide info about whether it is likely and shows it later. If it is a muscle/bursitis problem the x-ray won't show that.

[1Purplecrow in reply to PMRpro]

Well said, as usual👏🏼