Saw consultant: After Monday and my local GP just... - NRAS

NRAS

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Saw consultant

After Monday and my local GP just giving me antibiotics without talking/seeing me I saw my rheumy consultant today.

So no chest infection but he said stay off MTX till next week then because my nausea and bowel so upset by MTX we are going to try half on Tues night then half on Thurs night and see if this helps calm things down. If it works this is my system and if not we move to injections.

The great news he was impressed i had got myself off Prednislone and as he said take IF you need it for hands but otherwise being off it is good if I can cope with the joint pain. And then even better, I am off Pregablin as he pointed out it does nothing for RD so what is the point. So I am now off both the hunger/weight gain pills I might have a chance in losing some of the weight I have put on. Might be easy as MTX makes me feel like I just want to pick I dont want a big meal anymore.

Fatigue- he was honest and said no not the drugs its RD and something you need to learn to live with if we cant get the MTX to shift you in to full remission. But my new work hours might help too but be prepared to change things up.

Sicca has now been diagnosed rather than Sjorerns but need to keep an eye (pardon the pun) for time being but track any infections on chest etc for time being.

Felt calmer after seeing him as felt we had time to discuss all my meds and what does and does not work and as the WHY questions today so all in all apart from a 2hrs trek there and then back due to Norfolk and Lincs roads being busy it was a good day.

10 Replies

It all sounds very positive. It’s great when people listen and understand. Sounds like you’ve got a good one there . Bet it’s taken a load off your mind that’s a medicine in it’s self. Rest now 🤞🏻things improve

That all sounds good.

I’m impressed you’ve got off the Prednisolone. My hands are hurting and I’ve only reduced from 10mg to 9mg so far☹️. I need to lose some weight too and will make a big effort in the new year.

in reply to Lolabridge

I have only done 20 weeks max of it and 5mg max per day- I noted how it made me feel and though it masks stuff I would rather have pain then weight which creates more issues on joints. It helped my hands when they opened into sores so now take 5mg for a week then let them recover then off asap the Pred.

Its hard as joints sore but I really dont want to be stuck on Pred so I made a choice which Consultant understood and always have some to hand but try to stay off and use when needed only.

I take my hat off to you it’s not easy. I was offered pred but like you felt weight would only cause more problems and it only masks the problem not solve it.. well done

J1707 he drew a simple picture 3 circles linked and said whatever you do there will be a minus or a plus in one of the circles with RD. VERY true it is complicated and you have to work out what works for you!

J1707 profile image
J1707 in reply to

Your consultant is worth his weight in gold... your very lucky

My Rheumy told me not to reduce below 7mg. ☹️

Carolsos profile image
Carolsos in reply to Lolabridge

My consultant told me to get off steroids. I was on only 7mg and managed to get down to 1mg but could not move and was in agony! It took me 6 months. When he saw me told me to go back on them, so now take 2.5mg for life and I can cope with that! That was a few years ago.

I think it is all about how you are how long been on it and lots of other factors. But you can always keep asking and aiming for lower . I was told once you get to 5mg then any lower no point so I do a week or 2 at 5mg then off for ususally 6 weeks at least x

My rheumy wants me to stay on 5mg daily of Pred as it is keeping my Vasculitis under control. It's better than 40mg a day, and much better than a Vasculitis flare.

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