Here we go again...mtx: Morning peeps🙂 Hope this finds... - NRAS


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Here we go again...mtx

Moomin8 profile image
10 Replies

Morning peeps🙂

Hope this finds you well? Well... well as can be 😉 My last post (around 3 months ago) was about me stopping mtx- I did stop. I was offered leflunomide; I'm afraid I didn't fancy trying that one. After 6 weeks, my body started to rebel: swollen fingers (had to force my rings off!) and general pain throughout! I made an executive decision to restart my mtx (20ml) biweekly. I know, I know, we shouldn't self-diagnose but my next appointment wasn't for another 6 weeks so I thought- what's my body. Anyhoo...I had my appointment this week with a clinical nurse - to see how I'm getting on with leflunomide 🙄- I fessed up and told her why I had chosen not to take the drug and that I had had a conversation with my gp about everything and my 'plan' to take mtx biweekly. She could see - through my bloods - how my esr, crp etc had raised and then slightly decreased over the last 3 months. She agreed that I could start mtx again at 10ml every week with blood tests every 2 weeks to see how my neutrofils fair along with everything else- phew! She had a good prod around and listened to me really well. She agreed that my hips were awful (not in a 'aren't they gorgeous🥰 way😊) and gave me an injection in each of them. Ouch, ouch😫! I have another appointment in 3 months. I came out of that appointment feeling that I had been listened to and my feelings were taken into consideration. She was lovely- thank you Emerald🤩

10 Replies
Matilda_1922 profile image

I wish I had such an unfruitful appointment last time a month ago. I saw the consultant who I had no disease activity going on. Explained elbow not straight quite painful and felt swelling. Well swelling is fatty tissue didn't comment why I couldn't straighten my elbow and pain. So been to see GP have had a xray now waiting for review appointment in may.

Moomin8 profile image
Moomin8 in reply to Matilda_1922

Morning Matilda, it's crazy how different our appointments can be. We should have some redress where we can voice our opinions. Luckily for us, we have these lovely people on healthunlocked. I have called them on occasions when I have needed to vent and have been given great advise. Well done going to your gp and doing something about your concerns 👏

Matilda_1922 profile image
Matilda_1922 in reply to Moomin8

My GP has been taken over by a bigger practice and the GP he can give a steroid injection if needed. I not looking forward to this as it was quite painful last time and it didn't work. This was a year ago. I'm considering asking to transfer to another consultant as the previous one I had was a lot better.

Moomin8 profile image
Moomin8 in reply to Matilda_1922

Hi, I can get a steroid injection at my gp, if needed, but find a general one (in my bottom 😊) has never worked. If I need a general all over help, a short course of prednisolone (steroid) tablets works much better for me. As for changing consultants, maybe you should try- you can only ask.

Mmrr profile image
Mmrr in reply to Moomin8

If you are unhappy with what is happening at a rheumatology consultation then say so.

Remember, you have employed the consultant, a public servant, through NI contributions. If you were unhappy with any other person you employed, you would most likely say so, Drs are no different.

I always have someone with me at all appointments. They take notes about what is being said.

I submit a summary sheet of how my health has been since my last appointment. I talk the consultant through the top 2/3 points I want addressed. We mirror any $%%^^### that is said e.g.. are you saying $%^&&&^ ? , then my partner makes a point of writing it down. Often the $%^^& stops.

If I am being side lined I say something like , thats all very well, but I would like to raise.......and time is short.

Take no snash, these appointments are important, make sure you get what you need from them.

Moomin8 profile image
Moomin8 in reply to Mmrr

Here, here 👏

Hezekiah profile image
Hezekiah in reply to Mmrr

"Snash" is a new one word for me. Interesting one!

Mmrr profile image
Mmrr in reply to Hezekiah

Scottish colloquialism !

tristin profile image

Thanks Moomin8 for update. It is helpful to me and others to know what the results are of particular actions as it may help us make or not make certain decisions. Thanks for the information. Tristin

cathie profile image

I’ve taken both methoxitrate and leflunomide. The first I had for ten years until the medics withdrew it because of some reactions. I didn’t like it but I was much worse without. I’ve been on leflunomide for about 5 years and find it much easier with no reactions so far.

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