Side Effects

[Pat9442]

Azothioprine versus methotrexate. May have to change from azo to metho. Can anyone give me any information about side effects of both please. Currently on 9mg Pred

[polkadotcom]

I was on Methotrexate for two years (as a steroid sparer) and it actually achieved nothing as an end result, except for allowing a GCA flare in through the back door. Although I had little to no side effects to begin with, towards the end of the second year I began to get horrendous mouth ulcers, so was glad to come off it.

I can't quite see why you are on a steroid sparer if you are already down to 9mg Pred? There should be minimal side effects at that dose, but of course we all present differently and perhaps you have multiple problems?

[Pat9442 in reply to polkadotcom]

I was put on it because I had problems reducing the pred and it was deemed necessary for me to reduce as quickly as possible because I am a Type 2 diabetic and, although I was well controlled on tablets for many many years, my blood sugars soared and I have had to begin on insulin. All under control again but I very much want to be able to give up insulin injections and all that entails

[polkadotcom in reply to Pat9442]

I see, I'm T2 myself and yes, the higher doses always sent my sugar levels through the roof, but I was lucky that as I reduced the steroid dose, the levels came down with it. I was diagnosed with T2 diabetes around the same time as the PMR diagnosis, so I can't even blame the steroids for it.

Mine's still controlled and managed very well by Metformin - I can see why you want to get off the insulin, I would too!

[Ida-June128]

I was given methotrexate in an attempt to reduce my steroid dose (at 12.5 then). Because I have two broken femurs I am also taking 400mg of both Tramadol and Paracetamol daily and three days in on the methotrexate it was as if I was not taking any pain relief at all, somehow it seemed to block it. So changed to the azathioprine which gave no ill effects and I got down to 7.5mg then had a nasty flare up. My Rheumy increased the Aza. from 100mg to 150mg but I know it takes a while to kick in. I am currenttly on 12mg a day after having reduced by .5mg every 10 days to get down to the 7.5.....all seems to have been wasted now.

Did anyone hear a discussion about Alendronic Acid on Radio 4 yesterday afternoon? I only caught the end of it but a statement was made that they have no idea of the long term effects of it and it probably is not the wonder drug that it was hailed as. I can verify that with two broken femurs after only taking it for 2 years! in spite of a near perfect T score. I wonder if all those affected by the drug should get together and launch some sort of action?

[PMRpro Ambassador in reply to Ida-June128]

Well gosh! Having done a LOT of reading 6 years ago when I was finally diagnosed and given pred and the accompanying set of "let's avoid the side effects" medication - that was the conclusion I came to then. And the GP is went to and said "Don't like this stuff - don't want to take it" was in full agreement. Even then.

Hopefully a lot of people were listening too - because there are too many of them who pooh-pooh the concept that long term use in a large population is a very different matter to the 50 years use of a different substance in patients with Paget's disease which they try to compare it to. I took 4 tablets and I regret even having taken them to be honest. I wish I had waited for a dexascan. I did have one soon after and I didn't have a perfect T-score but it wasn't bad. It must be the English speaking world that has this love affair with AA - no mention of it here in Italy with the same results from my follow-up dexascan..