I am after some advice, I was put on Methotrexate 17.5 mg, this causes extreme sores in my mouth ulcers and boils in my gums, I was told by the Dr ( not Rheumatologist) to stop, I have done and it's now 12 weeks without this drug, yesterday I could hardly walk due to extreme pain in my feet, I have also swollen knuckles and this morning I have pain and stiffness in my hips and back, I feel like an old crock, I am worried about going back into this drug but I think I will have to. I am going to ring the Dr tomorrow.
I saw my consultant last week who said to monitor the condition without the drug and if I feel a flare up to get a blood test, I am sero-negative so the inflammation does not show, I am so confused about what to do but if I do nothing I fear I am putting my health in danger.
Advice would be appreciated.
Thank you everyone
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Sarahsay
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Hi, Could you request a steroid depot if you are able to have them, as an interim measure. I've done this on quite a few occasions. My husband has even gate crashed a clinic to ask if I could have one when I was really bad, and they did it after a short wait. My rheumatology nurse has on another occasion arranged for it to be given by my GP. I don't know if your medical history would allow this option or not though. Definitely keep on at the Rheumatologist and team by whatever means you have, I use email and the response where I live is very good. The GP might be able to contact the rheumatologist or team direct also.
Hope this helps, I know it's not much, but I really hope you get some resolve soon. Let us know how you get on. Candy
Sorry to hear about your problems with mtx. I read something interesting recently about a chinese herbal remedy that has been used in China for over 2000 years in the treatment of RA. There are also quite recent reaserch on its safety and efficacy. What is interesting is that it has been compared with mtx and results have shown that it's as effective with considerably less side effects. This is perhaps something to look into with your rheumy if you have a hard time tolerating mtx. It's the root of a herb called Thunder god vine. Here some info.
There are lots of other treatments available. Have a look at the NRAS website and the pages about treatments. You DON'T need to suffer unacceptable side effects to treat the disease.
I have been on lots of DMARDs and I came off methotrexate partly because of the very large mouth ulcers that I had - the bowel overactivity (in both directions!) feeling so terrible that I couldn't do anything for two days a week and the general feeling that I was ill all the time also contributed. I had extra folic acid (have you?) and had it by injection, but to no avail. Having already had other DMARDs in the past with other problems, I'm now on azathioprine which suits me much better - the 'morning sickness all day' feeling is the worst I get in the way of side effects.
Thank you, I wasn't told about folic acid at all, I have an appointment tomorrow so I am going to raise concerns all they want to do is keep increasing the methotrexate regardless of the side effects.
Folic acid protects your liver and makes you feel so much better on methotrexate. It also does reduce problems like mouth ulcers. Did your doctor not tell you? My specialist didn't tell me either. It was my pharmacist that first told me when i first got my script for methotrexate. I also had very sore gums etc when i got up to 17.5 and then 20mg. I dropped my dose back to 15mg and was heaps better. The injection can sometimes make it easier as well with mouth problems. It certainly made a difference to my stomach.
They call folic acid the rescue for methotrexate. It also stops or helps with the blah feeling. I take folic acid about 18 hours after the methotrexate and then daily for 5 days. Leucovorin is another form of it and a bigger dose of folic acid. Its the 5mg folic acid i have. Your doctor might suggest another dose. It seems to vary, but pharmacists are very helpful.
Folic acid wasn't mentioned, I'm a bit angry they never, it's taken me months to come to terms with RA as it is, I'm going to see my GP this morning and hopefully my Rheumatologist. Thank you for your advice.
Are you seronegative for everything, including the CRP and ESR? Some people seem to be seronegative for RF, ANA, ACCP etc. but show high levels of CRP and ESR so it's possible that some anti-inflammatories and steroids work well for them to control a flare. E.g., it seems that some people with PsA (psoriatic arthritis) are negative for distinctive RA blood markers but can have high CRP and/or ESR (but not always). Did you have swelling during the period that prompted the diagnosis and treatment or is this a new symptom?
It sounds like you're having a flare so this might be a good time to have additional blood tests (you might have 'converted' in the intervening period as this seems to happen).
As oldtimer describes above, there seem to be options around MTX (injection rather than oral etc.) as well as other medications to try. I hope that your blood work shows a clear picture and suggests a better way forward for you.
I didn't realise you're not taking folic acid supplements - it might be worth your time to chat about your medication with the NRAS Helpline: nras.org.uk/helpline
If you don't want to take it tell your consultant you don't want to take it. There are loads of other drugs they can try. It is very cheap so they try to push it as much as they can. I tried Methotrexate three times but every time it gave me severe suicide ideation which I didn't find acceptable. I didn't actually have any physical side effects, I told my rheumatology nurse and consultant each time that I was going to stop and they just moved me onto something else, or in the case of Rituximab just eventually agreed I could have it without despite recommendations you take them together.
I am very sorry for your condition, RA really takes our quality life away. However, it is very dangerous to stop mtx without the knowledge of your rheumy. Have a look at the link below for better understanding.
I have just posted "Methotrexate - My Recovery Journey" yesterday, you may go through it to have an idea of the possible journey with MTX. This is only a reference as we all are different, at least it gives you an idea of what to expect.
Also, you may go to my profile, to check the 2 very good videos that answered most of my questions when I was at the very early stage of RA. In addition, I also posted what kind of exercises that I did during my recovery process.
My suggestion is, whatever you decide to do, do check with your rheumy before you proceed. To work closely with him or her and to do your regular exercise are the keys of your recovery. This is my personal experience.
I take mtx by injection. I have been taking it by injection for ten years. I don't have mouth sores. I do take folic acid , you also need it to repair your dna.
I also wanted to alert you to the benefits of boron for arthritis including RA. I do take 18 mg of this mineral.
Like others have reported, we all tolerate and have different side effects from taking drugs and supplements. I am going to look into the Chinese supplement as natural is always better if it helps
Hi. I was on methotrexate tablets and could not go out for two days after because of diarrhea. I had mouth ulcers and thrush. They changed me over to injections and it has much improved, I could not get down off the high steroids and I have managed to decrease more successfully now. Of course we are all on our own personal journeys. I was prescribed folic acid from the beginning of taking mtx. I hope you find a successful way forward and feel better soon. Best wishes.
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