Hi all

I need your advice. As some of you might know I started taking my RA medication about 6 weeks ago. I take a mix of eternacept (1ml), methotrexate (10mg), folic acid and prednisolone. I have been on prednisolone for about 4 months having started at 15mg but reducing over time to 2.5mg. Everything was going well until this week.

I have been on 5 mg of prednisolone for 2 months and this coupled with my drug cocktail seemed to be working wonders. I have wanted to come off steroids ever since I was first put on them so after consultation with my rheumy two weeks ago I reduced my dosage to 2.5 mg for 10 days with the aim of then going down to 2.5mg every other day for 10 days and then finally stopping. All was going well until last week when I was down to the equivalent of 1.25mg of pred. The weather was lovely and I was feeling great so I decided to go for a walk in the local woods. I was out for about 1.5 hours (with short rests along the way) altogether and I did begin to feel a slight pain in my ankles but I thought it was nothing to worry about. The next day I went out shopping and I probably walked for about 1 hour in total. By later that afternoon my legs were in agony. It was not painful but it was as though my legs had decided to go to sleep. I spent the rest of the day lying either on the sofa or in my bed resting my sore legs/ankle. I have tried to stay off my feet as much as possible since then but since I live by myself there are certain practical things I just need to do. My rheumy nurse has told me to go back to taking 2.5mg per day and to try to rest up.

This is all new to me and I really do not know what the cause of the pain is. Do you think it is the reduction in steroids, the over exertion or possibly the hot weather or a mix of the 3!! I can still walk but there is some discomfort around my ankles. I am not due to go back for a check up for another 2 weeks but I know my drug cocktail will be increased which I was really trying to avoid. I guess this is all path of the course.

I know we are all on different cocktails of drugs but is anyone else suffering from painful joints in the heat? Is it normal to get pain when coming off steroids? I think I have read somewhere it is. I wonder if they will up the DMARDs or put me back onto 5mg of steroids.

Yours frustratingly Agnes

Hi Agnes,

I have noticed along with the heat I seem to be getting tingly legs and noticed that my feet go to sleep quite quickly (usually when sitting down with my legs crossed or with a laptop on my lap. I have been diagnosed since 2008 and the heat just makes me swell and I get quite uncomfortable. I notice that even when I walk my hands swell up. Since been diagnosed I have reduced a lot of my activity and now with the drugs working I am going to try and get back into doing things cos my stamina is non existent and I need to work up to a decent level now that the drugs are working.

So its a case of pacing yourself but not babying yourself or over doing it. Easier said than done, to get a balance. Its a case of find out what works for you as everyone is different. I have been on predislone since diagnoses and like you need to wean off. Its usually the last 5 mg thats hardest to get below. However you could try when the weather gets cooler and go down again.

Regards Mari

Hi All

Thanks for your comments. I think you are right and it must be the heat as well as reducing the steroids. I was only diagnosed 3 months ago so this is all new to me. I thought I would be ok after my walk since up until a month ago I was doing my teacher training placement at school which meant being on my feet all day so I thought I could manage the same now. I guess I need to go through a whole year of RA before I truly know how my body is going to react to each new weather condition but I guess extremes of weather are bad news for us sufferers.


Lorna - I've just noticed your comment about the frozen peas. Will that really make a difference? I'll give it a go later.

Agnes

Hi Agnes,

Yes I think I have been suffering a little from the heat. I was diagnosed 9 weeks ago and the MTX seems to have been working for the last 3 weeks, but this week I have had a very painful finger and slightly swollen ankles. I think alot of people have been suffering in this heat and affecting RA sufferers.

All the best

Anne x