Callback by RA Team today-

I am so impressed I got another call today to check how I was doing but then being told to use my MTX in 3 different ways, based on my side effects/my other meds etc and their knowledge of me.

It was short but sweet chat but gave me the info to use the MTX in various ways whilst they are busy in C19 World.

Take 1 a week if ok, take 1 every 10days if too much or take every 14 days if side effects bad. She explained it was trying to keep the drug in my body but lessen side effects.

However please note this is for ME this advice. But I was impressed with call back and the fact they are trying to help me stop going back to the start of my RA journey.

[Hidden]

👍result. I like this was a bit worried 20mg a week would knock you out

[Hidden in reply to Hidden]

I was nervous after 5 weeks but not too bad today though craving and eating carbs. She was so honest and left it to me to be sensible knowing I got what I needed to do.

[JulesCurrie in reply to Hidden]

I take 20mg a week . Your reply worries me . I haven’t heard anything from my health authority. Have heard an Essex consultant had told his patients to stop taking MTX ...

[allanah]

Woo. It's great some staff are still on the ball isn't it xxx very reassuring x

[Hidden in reply to allanah]

I nearly choked when I heard it's Laura RA I was expecting to be told don't do anymore, not go with the flow. Yes felt care is there and don't feel guilty to call if you are not feeling right.

[allanah in reply to Hidden]

No you are right, we still have conditions that need advice long term so yes I agree that we should call x

[Boxerlady in reply to Hidden]

That's great - it's wonderful when we have great rheumy teams, gives us extra courage when dealing with this disease.

[Summerrain14]

This is lovely to hear. Really hoping that you can tolerate the MTX in one of the combinations x

[sylvi]

That is what care is all about. xx

[springcross]

Really pleased for you - makes you feel better to know that you're not fighting this alone. xx

[patsymay13]

Well that must have given you some reassurance there Deeb knowing that you got some flexibility if you need it ..let’s hope it’s all ok from the off xxxx

[Spaniellady]

For me, MTX is an excellent drug at controlling the RA symtoms (I also take Hydroxychloroquine). It also has horrid side effects. However, I found it's all about getting the dose right. I started on 20mg, which was way too much for me, and I ended up seriously ill with difficulty breathing. I stopped, but decided to perservere because it does control the symptoms . I restarted 3 weeks later at 10mg, had no side effects, then 4 months later I started to flare. So not a high enough dose. I was tried to increase to 12.5mg, so every other week or so I'd take 12.5mg and managed to find an equilibrium between benefits and symptoms, until my body could tolerate 12.5mg. (I discussed this with the consultant and she was happy for me to 'play' with my dose. I am not advocating anyone else should without their consultant on board.) Then 8 weeks ago I switched to subcutaneous 12.5mg MTX, and I feel fantastic. I even have been able to go running again (before the lockdown). Early days I know, yrying not to get too excited, but I haven't felt like me for a few years...

[calflo in reply to Spaniellady]

I’m the same I used to take 20mgs when first diagnosed in 2009 then in 2010 reduced to 15mgs. But still had awful nausea etc. So a year ago I asked if I could reduce to 12.5mgs. What a huge difference it made. Little or no nausea and very little flaring too. X

[Hidden in reply to Spaniellady]

Thanks for this it is almost how the nurse put it a game on what works what does not.

[Spaniellady in reply to Hidden]

Exactly. It's finding out what works for you. I found it's worth persevering. Good luck. X

[Grumpyoldmare]

I have been on oral methotrexate for over 20 years. Learned to manage taking it in a way that minimised problems but always felt nauseous on the day I took it and the day after. Finally saw a new consultant 18 months ago who switched me to injections. Nausea gone!

[sandraM1961 in reply to Grumpyoldmare]

Found the needle worked way better with less side effects too! Kinda odd injecting yourself at first but have it down to a science now

[CagneysMum]

Just need to listen to your own body. I was struggling with severe nausea so consultant said to reduce 20mg injections to every other week. My RA went crazy after about 4 weeks so I had to increase dose back up and have a steroid injection. So go easy on reducing to begin with. Good luck 👍

[Benepaliuser]

Hi. I was on MTX and it gave me terrible nightmares. Changed my meds.

[Mmrr]

I took MTX 12.5 mgs / 10 mgs alternative weeks, which kept me going for a while. Whatever works for you is worth trying, this disease is very individual.

[CJ936]

My Kaiser team took me off the MTX, Prednisone and instead prescribed an opiate to use as needed for symptoms. My newly assigned rheumatologist at Kaiser saw me one time for an 8 minute appointment and I never heard from her again. No exam, no tests, no follow up. She just said she thought perhaps I was misdiagnosed and wanted to take me off all meds and wait to see what happens. I asked if I should schedule a follow up and she said it was not necessary. Nearly 4 months off meds symptoms getting worse and needing to take prescription Motrin or opiate more often, which does not control pain or restore movement. Also, 1 month off MTX I had a partial lung collapse, which I was told would resolve itself once I was able to take a deep breath again. I did not even realize I had a lung collapse until given an xray for what I thought was just another broken rib from coughing.