Hi everyone. I haven`t contributed for a while but I`ve been looking in to see how you`re all doing. I`m abit low at the moment. It`s taken me a few weeks to get down to 20mg. When I was on 30 my lungs started filling with fluid (I have COPD) so doc gave me a diuretic called Bumetanide which helped a bit. Saw my doc yesterday and said I was prepared to put up with some pain if I could stay on a lower dose of pred. She reluctantly agreed but had to ring her today as I`m getting shooting pains in my temples. She said she wasn`t surprised`cos my ESR was very high. SO- it`s back to 30mg! It`s like playing a game of snakes and ladders. Anyway rather be fat than blind. Hope you`re all bearing up and if not remember you`re not alone with this nuisance complaint. Shebob :roll:
Shebob
Sorry to hear you are 'down the snake' perhaps the only way is up with a bit of luck and a fair wind. I have GCA only and have been on the snakes and ladders for some time now, but over the 8 months, finally I have managed to reduce the steroids very very slowly. So you will get there eventually. I had to go up twice, back to the big dose of 60mg, but each time was able to come down a little bit more quickly.
I cannot remember when you were diagnosed and if it was with both PMR and GCA or just one of them. However as you state 'better fat than blind' I assume it is GCA.
Is is GCA only or both. Reason I ask is that a better marker for GCA is the CRP rate. The esr is important for PMR.
It might help you to read the guidelines issued by the BSR in June this year. Either google the BSR sight, or go to www.pmr-gca-northeastuk.org.uk and read them up.
Good Luck and keep in touch.
Hi Shebob and everyone else!
I haven't posted for some time because I've been struggling with a lot of problems and needed to make some decisions - big-time ones!
Following a very good appointment with my Rheumatologist it would seem that I am cooking yet another arthritic condition alongside the PMR. As yet there are no specific pointers to any particular one and so I am in the middle of yet another row of never-ending (that's what it feels like) series of tests.
However, having now been diagnosed with osteoporosis as well, I need to stop the Pred, which is easier said than done as I seem to be stuck on 4.5 daily. I have tried twice to lower this (very, very slowly) but both times I was forced to go back up again.
I was given a great deal of information regarding Methotrexate which
I have been considering since the appointment. It will cover most other types of inflammatory arthritis and it is also a steroid sparing drug - once established on it I should be able to reduce the Pred more easily and quickly.
Like Pred it has drawbacks - many of them. However, since my options seem to be very limited I have decided to take the plunge and go down this route, and I will be starting it very shortly.
I will post from time to time and let you all know how I am doing; I loved your 'snakes and ladders' Shebob, but not quite sure where this leaves me at the moment - crawling along the bottom of the board, I think!
I'm certainly enjoying this Indian summer we are having, such a shame we had to put the clocks back in the middle of it! Still, with some luck, Spring won't be far away.
Nefret
Hi Mrs K and Nefret,
Mrs K in answer to your question I was diagnosed in July. For a year I`d had pain in my head when I coughed or laughed. Sent down the usual route ENT specialist with no result. Physio suspected PMR when she could do nothing with frozen shoulders. ESR test was high. Doc has only ever mentioned PMR tho` she`s concerned about my head this time so back up on the pred dosage. Time befor lasr CRP was okay, but last time only ESR was done so I might suggest they do CRP as well at the next one on Nov 17th. It would help me to know exactly what I`ve got!!
Nefret re Methotrexate. My husband has severe rheumatoid arthritis and has been on Methotrexate for four years since a very bad flare-up. For him it has been a wonder drug with very few side effects.
Nice to hear from you both, keep smiling Shebob :lol: