Not responding to methotrexate... what's next?

[SLC03]

So I'm still in a flare up since September. Started methotrexate 15mg in January, lowered my hydroxy to 200mg and also on 8mg of prednisolone. In march I started feeling marginally better i.e. could get out of bed or leave the house once in a while, saw my rhuematologist again in may who raised my metho to 20mg and said that the metho should be working much better so put me on the highest he thinks I could tolerate, he wanted to see me in 2 months; the earliest appointment is in october! I'm still really low on energy, can't get around much and still get bad joint pain but marginally better than I was previously! I'm on the right level for my underactive thyroid. All my other bloods are fine. So now I'm a bit worried I'm not responding to metho and not sure what would be next? Or if this is the level of energy and pain I have to live with from now on? I hate complaining and just want to get on as I have a 1 1/2 year old to look after and I feel she's missing out, it's just getting me a bit worried that I'm not much better. Has anyone had anything similar with metho?

Sorry it's a bit long winded

Thank you all x

[NanaFifi]

Hi there, sorry you're having such a tough time. If you go back to your GP he might be able to get you an emergency appointment with your Rheumatologist? Don't know where in the world you are, I'm in Scotland and have had a flare up where I needed to be seen urgently and that worked for me.

I've been in flare up mode since last sept when Iost my mum but not nearly as bad as you. I'm on 20mg metho - injections - bad tummy side effects from pills; 400mg hydroxychloroquine; down to 3mg steroid and all the other meds that go along with RA and side effects from meds!!! I've also got an underactive thyroid.

I have read a lot on here about biologics, perhaps your rheumatologist will look at that for you?

Just know that you have a whole community here to support you and that things will improve - light at the end of the tunnel!

Get back on to your GP and nag them to death until you get sorted out!!

Good luck!

Fifi x

[SLC03 in reply to NanaFifi]

Thanks Fifi,

I phoned up to try get a sooner appointment but my rheumatologist has said he wants to see me himself and that really is the next available appointment, they've contacted him to see if there's anything he can suggest and I will be contacted if there's any cancellations. It just means a lot longer on the steroids which I was hoping to be off by the end of the year. Im wondering if he could put me back on the 400mg of hydroxy as this is what I was on before.

I will look at biologics see what they are. I like to have some idea of where the treatment might be headed, my rheumatologist isnt the best at explaining it to me (very clever man but lacking in the empathy side)

Hope you are also feeling better soon!

X

[misty14]

Hi SLC

Sorry to read your in a long flare and can't get a quick Rheumy appt. Just wondering if your GP couldn't raise your steroids for a short time to get you better and give the 20 mg MXT dose longer to kick in?. Your Rheumy could put you on the MXT injections as they aid absorption of the drug better than tablets. Hope you feel better soon and your GP hears from the Consultant. X

[Tiras]

👣👣👣👣👣👣👣👣👣👣👣👣

SLC03;

I have had a lupus/blister on my right foot for 2 years. Other rashes /blister they come and are gone in a few days but, not the one on my foot. With that being said, I have had to go barefoot for the last two years. I have creams and ointments, but, it will not go away. If any thing rubs it it will get raw and start bleeding. I take 12.5 mg of methotrexate 1 day a week. I take mine on Sunday mornings.

My motto is

👣"I WILL NOT LET LUPUS CONTROL MY LIFE. LIVE LIFE TO IT'S FULLEST"👣

I go everywhere ,do anything, at anytime, I go 👣Barefoot👣 everywhere. I have no choice.

My doctors have told me no shoes! I've gotten use to being barefoot, it now feels natural, and now, I don't think I would wear shoes if I could! There are some photos on my home page if you would like to see the rash on my foot. (There are photos of other rashes that have come and gone also).

I hope your rash goes away quickly. Keep us updated.

Tiras

👣👣👣👣👣👣👣👣👣👣👣👣

"The Barefoot Gardener"

👣👣👣👣👣👣👣👣👣👣👣👣