Cath56: Hello everyone, "I'm a new member", I'm... - NRAS

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Cath56

Cath56 profile image
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Hello everyone, "I'm a new member", I'm looking forward to chatting getting tips and comparing notes! I've had RA for approx 3 years,had good days and bad right now I'm taking 2x10mg methotrexate (inject) folic acid (except meth day) - sulfasal x 5 daily 1 hydroxychloroquin daily been experiencing extreme nausea over last few months thought it was the meth but on reading posts i'm beginning to wonder cant eat on inject day did take 20mg on 1 day but since the nausea worse RA consltant cut to over 2 days just started last night an feeling yeucky still to take other 10mg tonite any advice welcomed x

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Cath56
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Matilda7 profile image
Matilda7

Might be worth thinking about other ways of controlling the RA, like diet, so that you can start to cut down on some of the many drugs you are taking?

Lots of us have experience of altering our diets successfully. Won't probably mean you ever give up all the drugs but would hopefully enable you to cut down a bit ....we can give you our experience if you'd like?

Cath56 profile image
Cath56 in reply to Matilda7

Hi Matilda 7 thank you for your reply I appreciate it no one has advised dos or donts relating to diet i eat fairly healthy i enjoy the odd treat dont smoke or drink thats my guilty pleasure dont know of anyone with RA to get advice Rheum nurse is brilliant but doesnt have time for one to one they so busy. I feel im taking quite a few drugs an dont like it and for side effects it can be frightening. look forward to comments.

oldtimer profile image
oldtimer in reply to Cath56

You can do a search on here for previous posts about things that have helped like diet, turmeric etc. There is also information on the website about diet, exercise and other life style alterations.

Matilda7 profile image
Matilda7 in reply to Cath56

Do you have high CRP and ESR? They might well respond to diet changes. There was an interesting 'food hospital' programme a few years back on Channel 4 which looked at this and lots of us have found that changing our eating habits can help.

Culprits are often meat, wheat, sugar and dairy, but it varies from person to person.

Eating less processed foods and more organic is also worth trying.

It's something you have to experiment with and find out for yourself what helps. It's helped me which is why I suggest it.

The first thing I dropped was meat...only meant to do it for 2 weeks to see if it made any difference, and never ate it again and that was in 1982!

Sugar also is a problem for me...I vary in how strict I am depending on how my joints are. My wrists swell up within 24 hours if I eat lots of bread and jam as I did recently on a French holiday!

Are you able to swim? It's a gentle way to keep joints mobile. Have you tried yoga ever? Good for calming the nerves and helps with relaxation....

And fish oils are the one thing with an evidence base for helping with RA and worth trying. Hope some of this helps!

AgedCrone profile image
AgedCrone

Does anybody know why some rheumies prescribe so many drugs at once? How do they know which one is working & which one is causing problems?

In 17 years .....with 3 different rheumies.....I have only ever been prescribed one at a time......told to give each 12 weeks & if no good...move on .i did try prednisolone together with Sulphasalazine with disastrous results...so stopped both pretty soon.

If I had flares I had Depo injections to tide me over between drugs.

I guess things have moved on & years ago they took things slower?

nomoreheels profile image
nomoreheels

JIA Cath & welcome. I'm sure you'll find it helpful being here, seeing other members' experiences & sharing your own.

I was diagnosed in 2008, currently on 17.5mg MTX & 10mg LEF but have also previously had HCQ & SSZ. The latter I had to stop, even when reduced to 1 I still had terrible nausea (for which I was prescribed an anti emetic) but also caused very, very low mood, the eventual reason for stopping it & starting LEF.

MTX is a med that unfortunately gets blamed for a lot & when that's the only DMARD then it's likely but if we're on double or triple therapy we need to question if it is actually the MTX. This is more difficult for obvious reasons, we have other meds to consider if they could be causing side effects. So, it's a case of elimination, read the Patient Information Leaflet to see if it's a common side effect, or even if it's not. It was a reaction to SSZ for me, pretty easy to identify because I'd been on MTX nearly 8 years.

It's interesting your Consultant has split your MTX dose over 2 days, he/she must be erring on the side of MTX being the cause but of course that means you'll also be taking fewer folic acid, less of the supplement that helps ease nausea.

If your nausea doesn't ease I'd question if you could try reducing your SSZ & if that doesn't control you adequately enough increase your HCQ to twice daily. Or, if that doesn't ease it another option could be to reduce your MTX a tad. From experience just 2.5mg reduction can make a difference between my liver coping with MTX or not (no alcohol involved, I don't drink) so logically the same could be effective at reducing nausea.

I don't have side effects on MTX day but I do the day after, though they're not really side effects per se. I inject on a Wednesday & I'm just a bit more tired & feel less like eating so I just have picky things, an avocado for lunch & maybe peanut butter on toast at dinner time. By Friday I'm back to normal.

Hope my prattling is of some help & look forward to seeing more of you. 🙂

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