Hello I'm new here

[optermist]

Had GCA confirmed in January 2015 started on 60mg predisone straight away and thought I would be finished with the pred in about a year. Well here we are just over two years and slowly reducing, on 4mgs one day and 3mgs alternative days, so getting there. But today am in bed having had what I now believe to be my first ever flare, last two days really really painfull legs and lower spine, not able to sit down, stand up, lie down etc really considered increasing the pred to 10mg just to see if it would stop the pain. Have been taking paracetamol (2) every 4 hours and this has finally eased up the pain in back and legs (starting to feel human again) I avoid taking any kind of tablets if possible so will see how I am tomorrow when I will leave the paracetamol alone. I had a cold at start of week and think this may of brought the flare up on but never having one before I may be totally wrong. I have been reading reviews on here for some time now and any comments would be very welcomed.

[PMRpro Ambassador]

If paracetamol helps I might be sceptical the pain is directly due to PMR. But 1 or 2 days of 10mg wouldn't be a problem - if it doesn't work you can go straight back to where you are now. If it does work - off to the doctor.

But there are add-ons that can cause sciatic pain, piriformis syndrome or myofascial pain syndrome. Higher doses of pred will mask them, they reappear at lower doses. Sacroiliacitis would possibly fit too.

[optermist in reply to PMRpro]

Hi PMRpro and thankyou. I hadn't given PMR a thought as GCA is what I have been treated for since the beginning but I read somewhere that PMR and GCA can and often do run together. I am due for my monthly blood test in 2 weeks (CRP) then will see my doctor within 2 days of the results and will talk to her about your other possibilities for this pain. At least I feel better now that this might not be a flare up as I have been doing so well in reducing (did have to stay on 5mg mind for 3months ) before my doctor would let me further decrease. Will keep posting.

[PMRpro Ambassador in reply to optermist]

PMR can be a symptom of GCA - and sometimes you don't notice it at the start because the GCA is so bad or you are diagnosed quickly and it only appears as you get to low doses. Good luck!

[DorsetLady PMRGCAuk volunteer]

Hi outermost,

If the paracetamol has helped the pain in your back and legs then I would question if they are attributed to GCA - normally paracetamol does nothing for those pains.

Certainly your cold may have triggered a flare, so would suggest if things don't improve next week might be a good idea to get your bloods checked (that's presuming you had raised markers originally).

You could increase to 10mg and see what happens, and then return to your current dose fairly quickly, but you don't really want to take more Pred than is absolutely necessary especially if you are not 100% sure it is a flare.

As a post GCA patient I would say reducing from 60mg down to 4/3mg in just over 2 years is quite quick (took me nearly 4 years) so you really need to check what's going on.

[optermist in reply to DorsetLady]

Hi Dorset Lady and thank you. I'm taking on board everything you're saying and slightly relieved that this may not have been a flare. Like I said in my first post that having never had one so far I didn't know what to compare it with. Yes I know I have been lucky to get to where I am at the moment on the pred but I will be seeing my doctor for my monthly check in the next 2 weeks. She has done my bloods every month since it all started, Will keep posting.

[DorsetLady PMRGCAuk volunteer in reply to optermist]

Hi please let us know how you go on.

Like you, I never had a flare either. My bloods were raised about 18months in, but no symptoms whatsoever. I had them checked a couple of times, and my doctor (who had initially mis-diagnosed me) insisted I up my Pred.

In hindsight, with more knowledge I now know my bloods were raised because I was very stressed, hubby was in and out of hospital at the time, so they are not always accurate whereas symptoms are - usually!

[optermist in reply to DorsetLady]

Hello DorsetLady and it's good to know that you never experienced a flare either. After starting me off on pred at the hospital (my doctor booked me in immediately ESR 117) consultant quite certain I had GCA had biopsy done in first week whilst being on pred, came back positive and then my doctor just took over with the monthly bloods of ESR and reducing, hit a hurdle at 9mgs ESR wouldn't come down but my rhumatoligist decided to try using the CRP which did the trick...my doctor has used it ever since. But of course every month I keep my fingers crossed as maybe it'll be the month I won't be able to reduce and my doctor is very good at treating all of me, not just the blood results, she's also made sure I have had regular kidney,liver etc blood tests done as well. I stay optermistic that one day the preds will be a thing of the past, but I don't stess about it like I did that first year. Didn't think I would get over some of the side effects either, especially the awful fatigue and mood swings, but hey ho never say never, coming through the other end now. Hope your still doing good.

[DorsetLady PMRGCAuk volunteer in reply to optermist]

Yes I am thanks. Been off the Pred for 7 months now, and feeling better than I have for years.

Still aware that I need to be vigilant though.

Some of the side effects are pretty horrible I agree, but unfortunately Pred is the only drug that controls the inflammation caused by the disease, so we don't have any choice really.

[optermist in reply to DorsetLady]

hi there it's been very uplifting reading your reply. 7 months off pred that's a great result. Yesterday no paracetamol and thankfully pain free. Cold has come back with a vengeance though tight chest and aching all over but I can cope with that as it's nothing compared to the pain I was experiencing. Will keep posting.

[DorsetLady PMRGCAuk volunteer in reply to optermist]

Please do! And give yourself some TLC whilst the cold is hanging around.

[kellykel]

Hello, I am new here so don't have any experienced help with this. Just wanted to say I really empathized with your situation: really painful; wondering what to do now - take more pred? I get your comment so well about "feeling human again." Thinking of you. I am so sorry you have to go through this. You are a trooper though and will get through it.

[optermist in reply to kellykel]

Hi Kellykel and thankyou. I didn't need to up my pred after which I'm obviously glad about but yesterday was the test as having decided not to take any more paracetamol if the pain had returned then I may have. Anyway onwards and upwards apart from having this cold back which I can deal with. Will keep posting.