visit to rheumy

[kingharold11]

I have been to see my rheumy today not seen her this year at all saw another one in June who read me the riot act because I was still on nine and struggling to reduce he told me I had myopathy and that I would have to take methotrixate (think that is right) anyway no thanks to them I have reduced down to 5 mg as of last Saturday feel fine and intend to reduce further after Christmas. Saw my proper rheumy today she says I must reduce by 1 mg every 2 months and possibly leave it 4 months. I said I feel fine. Do any of you out there agree with her should I leave bigger gaps between reductions or play it by ear and see how I go. Wendy

[DorsetLady PMRGCAuk volunteer]

Hi Wendy,

I would think she's one of the sensible ones. Hold on to her!

I use a slow plan which takes about five weeks to complete, and only reduce by 0.5mg a time ( have done since I got to 7mg, now juggling 3 - 2.5 drop). I found that to be good - so much like the timescale she recommends.

If I feel okay once I've got to new reduction, I give it about a week, and then start again. If I don't feel okay, or know I'm going to be doing something slightly stressful then I wait for a week or so.

I think sometimes when you get so low you need to stop on one dose for a little longer just to ensure everything is under control.

We all want to be off the Pred, but my thinking is, I've been on it for almost 4 years at some v. High doses I'm not going to "bugger it up" (excuse language) by going too quickly now I've got to this stage.

Four months may be a bit longer than you like, so you could try two maybe - that should give a good indication that everything is ok. But, whatever you do, DON'T RUSH IT and spoil everything now you've got so far. Good luck.

[DorsetLady PMRGCAuk volunteer]

PS

How's your fatigue at the moment?. I'm suffering a bit and I know you queried it previously in a post.

[kingharold11 in reply to DorsetLady]

tiredness is not too bad at the moment except for last week hubby was in hospital having a knee op and as I don't drive I had to traipse there on the bus, Glad he is home now. But I can walk 3 or 4 miles without colapsing

[PMRpro Ambassador in reply to kingharold11]

I know it probably feels an awfully long time - but she IS giving you the option, which is basically saying, try 2 months between but if it doesn't work, don't worry, take it slower. These low dose reductions can be tricky and if she was forcing you to go at her pace there are all sorts of things that can wobble - but she's not, she telling you to go at your pace.

And as DL says - hang on to her!

[Lafontainepam1]

I have been struggling to stay below 5 mg. Every time I get at 3 I get a flare up. When I was to my Dr. A few months ago he also wanted me to consider going on methothotrixate by the end of this month if I had to go up which I just did. I have been doing the slow reduction and it had been working. My body just couldn't take a 2 week trip to Az and back, with Christmas to deal with! With my research on Methothotrixate I will not be going on it, no matter who says!!!!

[HeronNS in reply to Lafontainepam1]

Lafontainepam, it sounds like you are already at a pretty low dose. Wonder why your doctor wants you to take on yet another drug with its own suite of side effects when you must simply need to stay at about 4 or 5 for a bit longer. I'm happy just getting successfully to 7 and hope that I'll join you at 4 or 5 in the spring!

[Lafontainepam1 in reply to HeronNS]

It's because I've been on Pred. For 41/2 yrs I think. But I'm not going to go on anything else. My bone density came back good so I'm happy! I think we know more about this then they do sometimes, we live it, with all its ups and downs!😊