Questions, questions, questions : I have been taking... - NRAS

NRAS
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Questions, questions, questions

Smithycat
Smithycat

I have been taking Sulfasalazine since November but it wasn’t working so my Consultant has added Methotrexate. I would be very interested to hear how long it took to work for any of you and at what dose?

I have asked for ill health retirement if it is granted does anyone know what the implications are for eligibility for PIP or ESA?

16 Replies
oldestnewest

It took 9 weeks for MTX to start working at 15mg. However subsequently increased to 20mg, plus hydroxy and Sulpha.

Not sure there are any implication for PIP from taking ill health retirement. You can be medically unable to do your job, but still not be considered to be sufficiently disabled to qualify for PIP. And vice versa.

It's nine years ago, but if I remember rightly, it took about two to three month of MTX and Sulpha to give me a chance to fight back for control over my life. One or the other alone didn't do it. Good luck, keep us posted.

Thank you. It’s a long and windy road! Will keep you posted 🙂

I started MTX tablets at 15mg rising to 25mg over a few months and changed to metoject 25mg last December (I think. The memory isn't that good). It took two to three months for improvements to show a benefit and the dose will be dropping to 17.5mg at the end of the month. Wishing you well

J

Smithycat
Smithycat
in reply to Gnarli

What is metoject and why did you switch? I am taking 15mg of methotrexate and already having some troubling symptoms so dread an increase but guess will have to wait and see what the Dr says at my next appointment. Thanks 😀

Gnarli
Gnarli
in reply to Smithycat

Metoject is an automatic sub-cutaneous injection of methotrexate. It sounds horrific as you're just starting out but, believe me, it is painless and made a massive difference. I was swapped because, over time, the nausea became an issue. My symptoms of pain and stiffness are now greatly diminished so we are trying to find the lowest therapeutic dose. I hope this helps

Smithycat
Smithycat
in reply to Gnarli

Thank you 😀

If you put methotrexate into the search box, I'm sure you will get hundreds of posts! But most of them will be from people having problems rather than all the others (the majority) who are leading nearly normal lives on it. But for some people the side effects are not tolerable or it's not effective enough - can't tell until you try it!

Smithycat
Smithycat
in reply to oldtimer

I am taking 15mg at the moment and have some troubling side effects so not keen on an increase but guess will just have to see how it goes. Thanks😀

Hidden
Hidden

MTX took at least a couple of months for me on 20mg but side effects not great, reduced to 12.5 mg. never tried sulfa, so don’t know sorry. Pip is not means tested, you can claim whether working or not. I got v small ill health pension; would imagine basic tax code applies to this and same for esa but not sure x

Smithycat
Smithycat
in reply to Hidden

Thanks for message. I’m taking 15mg at the moment but it doesn’t seem to be having any effect. I have some troubling side effects so not keen on the dose being increased. Are you still finding it effective since you reduced the dose? 😀

Hidden
Hidden
in reply to Smithycat

No I ve come off it after a year, waiting for tests back for benepali: tbh all these meds scare me but supposed to have few side effects ?? Good luck with yours x did find it effective tho not totally for hands n wrists just made me sick 3 days a week, but you can always come off all of them I guess and try others : btw I do not feel anywhere near as blasé as I sound there 😀

Smithycat
Smithycat
in reply to Hidden

I am not looking forward to tomorrow as yesterday was mtx day and I am worse on the second and third day. Have been prescribed Cyclizine for the nausea. This is so draining, especially as not getting any benefit yet and have been taking it for eleven weeks now. I don’t know how bad these meds are, have fortnightly blood tests and the pharmacist gives me lots of do’s and don’t s but the medics seem blasé 😮

Hidden
Hidden

Same here tho I had a lovely one last time: I had cyclizine too but didn’t find it v effective.

I too was on sulfasalazine with the Methotrexate 20 mgms added. It took 3 months on Methotrexate before I noticed improvements. Two months in on this drug I added CBD oil. I am now in remission for over two months. So not sure if it’s from Methotrexate or CBD oil but continue on being more hopeful and grateful and optimistic about the future.

Thank you for your message. Maybe I do need an increased dose of mtx as only on 15mg which isn’t working😀

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