Giving up meds

[cariad68]

As methotrexate 25mg dose was making me so ill, nausea, cramps, dizziness, mouth ulcers etc. Before christmas I decided to give it up for a while and change my diet to veg and fish and cut out gluton. But it has all backfired and this last week being suffering from the worst flare ever . Now have asked to try reducing dose to 15mg per week. So will see how it goes..

[Bootoo]

you considered injecting instead of tablets, i've been on them about 3 months now and the nausea and mouth ulcers have gone, i still feel wiped out the day after but i can cope with that

[cariad68 in reply to Bootoo]

I am on metoject injections.

[Bootoo in reply to cariad68]

wow and you still get mouth ulcers.. doesn't sound good, hope you get sorted soon

[Hobbledehoy in reply to Bootoo]

Folic acid helped my mouth ulcers.

[Frankiefocus]

HI Cariad I was having alot of nausea from methotrexate and my rhuemy changed me to sulfasazline and its took a while but Im feeling no nausea and the odd joint pain which I can cope with. The again we are all different. Hope this helps.

[bedfordlodgers1 in reply to Frankiefocus]

I was interested to see your problems with Methotrexate. I to went back to sulfasalazine. I was suffering with cellulitis in my legs and it stopped when I came off the methotrexate, I do not know anybody who has had this but it obviously did not suit me. I do have peripheral neuropathy in my legs so perhaps that contributed. I do hope you are progressing well.

[rab1874]

Hi I can only go up to 20 mgs off mtx as couldn’t take 25mgs, I also take Humira alongside both injections and have been on mtx for 4 years now still get fatigue and bother with hands and feet but apart from that their working well

[helixhelix]

There are so many other things apart from MTX...can you ask to try amother drug?

[cariad68 in reply to helixhelix]

Helix tried several others o er the years. All with some form of side effects.

[helixhelix in reply to cariad68]

There arenew drugs being developed all the time, so ask your rheumy again as there may be something that will work for you

[ThomasTom]

I’m sorry to hear it’s been rough. I really disliked methotrexate too. As others have suggested I think it’s good to discuss alternatives with your specialist. There are some good books with recipes to help with rheumatoid arthritis etc. I tried a dairy and gluten free diet — and it made no difference at all. A balanced diet with plenty of fresh veg and oily fish, and there is lots of evidence that there are good and bad acids etc so some fruit and veg are better than others. Its a big topic in it’s self.

I’ve ended up on a drug called Hydroxychloroquine Sulphate, which is also an immunosuppressive drug, but it’s mild compared to some other drugs, it does seem to have slowed down the progression of my form of rheumatoid arthritis. But good luck and hope your specialist can help you to put together treatment.

[Lynnekw123 in reply to ThomasTom]

Hi, what do yo mean by “my form of rheumatoid arthritis “ ? Are there different types of RA other than positive o negative?

[ThomasTom in reply to Lynnekw123]

I have Psoriatic Arthritis which is, I think a form of RA, as I tested positive for RA. I might be wrong, I’ll need to check.

[Cheylann]

Sorry u are experiencing this. Unfortunately I don't think cutting out certain food groups is the whole answer otherwise the disease would be easy to control. Isn't there another drug u could try? U shouldn't have to go through those nasty side effects.

[Jules13]

How long did you give the methotrexate? I had side effects to start with but after 2 months I was fine. X

[RichardG]

As others have said you need to go back to your rheumatologist and ask for something else, there are several alternatives. I could not take 25mg MTX either - mouth ulsers mainly but nausua. Tried sulphasalasine but couldn't tolerate the stomach cramps and pains and had eye problems with plaquinal. However within 4 weeks of taking Humiria I was officially in remission. Have taken this for over 5 years with 5mg MTx with no side affects and no RA pains and gone back to playing football, golf and bowls. Took about 2 years to get the meds that worked for me and I hope you can get a similar result.

[Nyreedw]

You mustn't give up on meds. Maybe changing to injections etc, there are also lots of others. I've been on mtx for 20 years and never had any problems. Without meds RA doesn't just attack the joints it attacks the internal organs including heart, lungs kidneys and eyes etc. Diet might help but it won't stop the damage being done. Speak to your rheumy nurse and see what they say x