Exhaustion the harbinger of ....

forgot the word!, it means relapse. Anyway last night up all night with head pain, half past 4 in the morning and I was trying to make me head feel weightless in the bath (yes it was and is still attached to the rest of me) I was due to see the doctor today and to no ones surprise he raised my pred back up to 50 with the warning to go directly to hospital if pain does not respond. My body is certainly responding, not liking it at all but hopefully in a few more hours the pain will reduce. And to think I was having a whine about exhaustion, I really ought to learn that it could always be worse 😀

I've to phone my consultant, dreading this because he wants me on methotrexate and try as I do I cannot find positive feedback on this drug except from doctors . Actually as I sit hear, my head is improving, the feeling of cramp in my jaw is lifting ....pot of gold and rainbow time.

[granny-b]

Hi.

Disappointing I know but you don't want to lose your sight or anything even worse.

Pleased you are feeling better already. Hope it continues.

In my limited experience there could be some discussion to a treatment to relieve the problem and suit your preferences.

All the best.

[lesley2015]

Oh bless you.

So sorry you are struggling so - I too was offered Methotrexate but I am being stubborn at the moment.

Listen to your body, if you are feeling a little better hopefully its going in the right wasy and once the flare has settled you can reduce again.

Its a bit of a rotten roller coaster ride which we all want to get off of.

Sending you lots of healing thoughts.

[PMRpro Ambassador]

Hard luck - rest and act like a poorly person for a while. xxx

But that's the answer to your Spain trip I suspect?

Unfortunately, relapses are common in GCA in the first 18 months after diagnosis. The most common cause of flares is reducing too fast or too far - and too many doctors are too keen on doing both, forgetting that every patient is different. When their pre-conceived reduction plan doesn't work - they want to add mtx. I know it is conditionally recommended for PMR but the new international recommendations for GCA haven't yet been published and the 2010 GCA guidelines don't really discuss the concept well. I suppose it is worth trying - IF it doesn't make you ill and it can do.

[Doralouise77 in reply to PMRpro]

PMRpro,

The guidelines you mentioned, are they the BSR/BHPR ones? I've been meaning to ask about them, as I think I have misunderstood....are they just that, guidelines, as in suggestions for best practice? or are they already considered best practice/the gold standard? I had thought the latter but from what you've said maybe they aren't yet? Thank you.

Cheers

[PMRpro Ambassador in reply to Doralouise77]

The 2010 ones are BSR/BHPR ones - here's the link, you can read the bumpf for yourself - I don't think there is anything concrete about best practice but I may be wrong. There is a section at the end about audit standards.

rheumatology.org.uk/include...

At one point it says they will be reviewed "every 3 years" - it is now 2016 and the latest recommendations have not been published yet - but they will, like the recommendations for management of PMR, be under the auspices of ACR/EULAR so will be internationally recognised.

I've just read them through fairly quickly - and I think there is one person on this forum who would feel that at least one of the authors doesn't follow their own recommendations. If they don't - how likely are others to do so?

[Doralouise77 in reply to PMRpro]

Thank you

[Megams]

~Sending oodles of special thoughts and the kindest of wishes in the hope that by the time this reaches you the pain has vastly improved.

Abundant blessings too ~

[cdenoncourt]

If you try Methotrexate, as I was persuaded to, at least all you have to do is stop it if it is making you sick (as it did me) and you will return to "normal" quickly. Regular tests of liver enzymes must be part of trying it.

[Joyful13]

I have GCA. I was on Prednisone 40 mg for months, but the Prednisone did not help my GCA. I am now on Actemra IV Infusions which really seems to be working. This drug will soon be going for FDA approval in the U.S. for GCA. My prayer is that Actemra will be used in many other countries. I pray that you will get some relief now. Take good care of yourself.