Yesterday I had my first rheumy appointment and my nurse has put me on Methotrexate 10mg once a week and 5mg Folic Acid.
Its all been abit scary really. I was first diagnosed with seronegative R.A in January this year but have been on Prednisolone since, which has obviously made me balloon!!! So I guess the positive is that I’ll be stopping these soon, but now im moving onto the Methotrexate, which makes it seems all too real.
I have been lucky that I work part-time (up to now), but now im moving to full-time work (new Job) and that equally scares me to think I might be off sick because I cannot cope with all the flare ups and possible reaction from the meds.
So as I understand it, the Methotrexate will make me feel nausea and run down, plus any other side effects.
So if there any recommendations/advice you can give me, this will greatly be received, its pretty stressful getting my head round all of this, im 36yrs and to think only 4 years ago I was backing packing round the world, this has come a real shock! ☹
Thanks for reading
Helen
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HMSHelene
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Welcome, and look forward to back-packing again once you have this under control. Life can be pretty normal with RA, but this forum does tend to discuss the bad side more than the ok side. I'm now 95% normal with the drugs.
It's not a given that MTX will make you feel nauseous and run down, especially starting on 10mg. I'm fine on it. Drink lots of water and try not to overthink it. For the majority there are no problems at all.
Hi helixhelix, I'd figured out that this forum might dwell on the worst parts, but your right there’s no guarantees about anything especially the meds, so just gotta try them and see how I get one. I think the thing that people have speculated on is to drink lots of fluids and stay hydrated.
P.S) Very much looking forward to getting some normality and travelling again.
Drink plenty of water it takes the nausea away and I usually take mines before I go to bed so I sleep off the majority off side effects, I'm seronegative as well have been for 3 years I take mtx 20 Mgs and Benepali and I'm a lot better now
Thanks alot for your reply. Ive heard on the grapevine drinking lots of fluids is a must. My nurse told me to take my pills after my dinner, so that'll probably be about 7pm-ish and your right, just settle in for the night and sleep the effects off. Almost like being on a really flight and try to sleep off the turbulance. Have you found the meds have helped with having a "normal" life.
Hi I'm living a nearly normal life but still get a bit off pain and fatigue and have learned to pace myself when doing things but I'm at fitness classes most days and swim a lot which is good for the joints, don't be to disheartened if it takes time to feel better again as it took me about a year to stabilise my meds and everyone's different so you might be quicker but like every illness you get good days and bad days so you will get there it just takes time
I too am recently diagnosed with seronegative R.A and am on my third dose of mtx at 15mg. I was also very anxious taking my first dose but received lots of help and encouragement on here. I did suffer some side effects, nausea and headache but this could even be due to anxiety actually. I've since been prescribed medication for nausea should I need it. I've been on pred since Feb starting at 40mg and feeling very bloated. I have had more side effects in pred.... sweating, insomnia, hunger, fatigue than mtx so I am so glad to be lowering pred hopefully to zero when mtx takes effect. I was advised on here to take plenty of water when taking mtx and just in general and take folic acid 24 hours after mtx as any earlier can interfere with its effectiveness. I haven't felt any good effect of mtx as yet..it's too early I presume but had blood tests on Tues and all were as before I started mtx so nothing negative and all good so far.
You will get lots of help and encouragement on here and whilst mtx hasn't suited some people it is apparently the gold standard treatment for RA and as I was reassured there is no reason for you not to think you will be in the majority that it works for and have little or no side effects.
Thank you so much for your reply. I understand what you mean about the steroids. I started on 30mg. To begin with everything as fine, but like you I started sweating (felt like I was going through the change) and insomnia and almost a thrush-type-thingy in my mouth. I had to use mouthwash every couple of hours to get the metallic taste out of my mouth Yuk!
In terms of the hunger I was all right, nothing major, which was great, I was told by a friend to drink extra water as the steroids can effect the liver/kidneys. Finished them, was originally meant to go on the Methotrexate, but that was delayed because I was going on holidays so they gave me more steroids to last until my next appointment. Then like a bolt out of the blue the hunger came. It was almost like a scene out of Game of Thrones, I was just happy to graze of a leg of lamb at Easter like an animal. My other half just laughed at left me to it. But glad’s that gone now.
Anyway, but yes, the methotreaxte, erm you’re right, just take it one step at a time, and drink fluids. What anti-sickness drugs did they give you? I get terrible motion sickness (planes, back-seat passenger, boats) so that does worry me.
Im officially starting my meds on the 10th and having blood tests every other Wednesday.
Fingers crossed the road is smooth-ish ahead.
Thank you for your reply, i hope your doing better and the meds kick in and your notice the difference soon.
Hi again...yea steroids and me are not friends...endless side effects...still laughing at picturing you devouring your Easter lamb! .but hey they killed the pain immediately....felt like a miracle. I'm on 7.5mg now so hopefully won't be long til I'm off them.
I've not received my anti sickness med yet. Should be ready for me to collect in pharmacy today. I think my rhuemy said stemitil or something like that. The nausea I have is annoying but not debilitating and comes and goes so not even sure I'll need to take it (reluctant to add more drugs !) but comforting to know I have it in case. I was on an hour and half bus journey the other day and it was particularly bad so maybe other factors play a part too. So it'll be nice to have that med in those circumstances.
Best of luck in the 10th and Keep your positive outlook and you will be traveling again in no time I'm sure.
Ive got one more week of taking 5mg steroids then start the Methotrexate. The rhumey nurse said if my joints swell up and become really painful to go back to my GP and get some more steriods, but we'll see how it goes. I'll give paracetamol and Iberprofen a go and see if that just numbs it down.
EEEEk thats a long time on a bus, I'm better on trains than buses. I always have to sit at the front as i usually get motion sickness, i wont even start on coaches!!
No Helena...Methotrexate will not automatically make you feel nauseous,run down or anything other than quite normal.
I started as you did on 10mg per week plus 6 days on Folic Acid. I progressed through to 25mg per week, just feeling fine.....for 7 years! So,will you if you can put it out of your mind that you will automatically feel rotten.
I don't know if the way I took it helped ....after dinner with a large glass of water. I slept well but if I woke up I kept a bottle of water by the bed!
Obviously everyone isn't as lucky....but a lot of us are, so get your head into the mindset, you are starting a new job which will be great, & you will feel fine!
If the worst does happen & Mtx does not work for you....relax, there are a lot more Dmards in the pipeline & one will surely suit you.
But do get off that Pred ASAP....I call it the drug from hell!
You are completely right, if you go in thinking the worst, more than likely your brain will think it is. So stay positive!
Eveyone so far has said to take the medication after dinner last thing at night with a big glass of water and yes, i'll take squash to bed as well.Got to stay hydrated.
I am excited about my new job, because its exactly where i want to be (ophthalmic technician - looking at people eyes detecting Glaucoma etc) i was just abit worried that i didnt want to go into a job feeling crap and needing time off. But i wont be starting that til July, so that should be at least enough time for things to settle. and as you said, if it doesnt well theres always alternative.
Well as I live in Lancashire our weather is never straight forward--- blue skies and sunshine but with gale force winds thrown in for good measure lol 😎
hahaha, yeah its abit like that down here in the midlands, already managed to get 3 lots of washing dried on the line although im making regular peg-checking trips!
I had no issues on 10 mg of MTX plus 5mg folic acid/ 1x week. I take injections rather than pills but there are many who do just fine on pills so no worries!
I imagine they used the prednisone to help with the diagnosis as you are sero negative. Often when MTX is started some doctors give a low dose of prednisone to help as a bridge because it can take awhile for MTX to kick in. I'm sure they will closely monitor you and if you're really lucky it will be quick to work for you!
If you find that you are having a bit more inflammation when you stop prednisone and begin MTX don't worry and think MTX isn't working as it does take some time just let your nurse know so she can advise.
I wish you the best and hope to hear from you when you're backpacking again!
Thank you for your reply. You are right about using the prednisone as a bridge, ive got about a weeks worth (5mg) left, but i get the feeling i'll get in contact with the doctors just to bump me up with a low dose supply just to last a few weeks. i'm down to 5mg but my fingers have swollen up, and now my toes and feet are hurting to walk. So as i said i might just ask my doctors just to supply me with maybe 2-3weeks dosage whilst the MTX kicks in.
Im glad to hear everything is going well at your end, did you start with tablets first then go to the injections? Anyway hope all is well at your end and you have a lovely weekend.
I started with injections but I don't live in the U.K. Seriously, no worries, as I said you'll find loads of people on here taking pills. If you really can't tolerate them they will very likely offer injections.
I don't do anything special at all on my MTX day only to inject at night. The following day I can go about my life like any other day. I can even exercise with no issues the next morning so it's not always doom and gloom.
It may take a few good weeks or months for your body to get use to it and settle down which is perfectly normal but they'll keep a good eye on you and you have so many people on here that will help you along the way.
Lots of great information above, and hopefully you'll find lots of support on this forum. If you feel you want to talk to someone, don't forget our NRAS Helpline is open 9.30-4.30 Mon to Friday. We also have a lot of information for those newly diagnosed and information about Methotrexate on our website. I've put a few useful links below but if you need anything further, please don't hesitate to ask.
Welcome to the best support group ever Helen!!! I look forewards to getting to know you.
MTX scares everyone. Please know that everyone reacts differently. Some people have no side effects. My mtx days are spent hanging around the house or out in my back yard. I always carry a water bottle and I drink as much as I can. Water keeps the headaches away the next day for me. I learned this the hard way.
Don't forget to take your folic acid as your doctor prescribed. Some people panic about folic acid as doctors seem to vary on how much and how often to take it.
I have been on methotrexate for 10 weeks in inject it in my thigh once a week 15mg.(I started on tablets) I haven't had any side effects at all. I am taking sulfasalosine daily too. I am tapering off the steroids at the moment. I have been on the 3 months. I was hungry like a horse I put on a stone. I am down to 4mg a day now. I will drop 1mg per week. All seems to be well. I will be off them on three weeks fingers crossed. They do their job, but an awful drug to stay on. I won't take them again. I wish you luck. If you do have any issues your rhuemy will sort you out xx
Hi HMSHELENE and welcome to the gang. Getting this diagnosis is bound to be a shock and you are not alone in feeling scared. I was terrified when MTX was prescribed as I had read of its side effects. So, I took the first dose with my evening meal washed down with ginger beer and - nothing. I felt a little icky next day and maybe a bit slower but that was it. Most people have few side effects and it is effective against RD. I'm currently on 25 MG MTX and still no nasties. Wishing you all the very best. Hugs
Hi I know how you feel I felt the same when I first started on mtx tablets yes you do get side effects but I was lucky the medication worked I got to a stage on the tablets where I felt nausea a lot of the time and told the nurse who changed me on to metojet pen and nausea went I must say I do more exercise now than I did before I do get some aches but I am just thankful that i do not get the pain anymore where I could not dress my self or wash I hope you are as lucky as I am x
When I started methotrexate (15mg), the first few months were an adjustment, with some side effects but as time went on, I learned how to better manage them and I have had fewer. For me, I had stomach pain & fatigue. To combat those side effects, my Rheumy prescribed folinic acid (leukovorin) which is metabolized a bit better by the body than folic acid. It helped me a great deal. Also, I find I am tired and a bit "off" the day following my injection, so if you are concerned about work, you can consider taking your methotrexate on Saturday at supper time and taking it easy all day Sunday. Personally, the effects of the drug do not kick in until approx 6 hours following the injection, so you should be just fine Saturday night. And for me, the rest of the week, I feel fine!!
I am sorry you are going through this - at such a young age. But I have heard of several cases where methotrexate put RA into remission, so this could be the case for you. In any event, you need to try to stop the progression of the disease and ensure that there is no joint damage as a result and thats what these drugs are supposed to do.
Hi Helene, sorry to read that you've been diagnosed with RA, your post reminds me of me several years ago when I was first diagnosed it's a scary thought wondering what the future may bring. I think everyone has summed it up perfectly but to add. it's not a life sentence and the treatments are getting better and better all the time. I think it's good too that you're working as a lot of us are and there's reason why we shouldn't, I know it keeps me sane!!!...you're still young and have your whole life ahead of you and once you're on your medication there's no reason why you can't stop living it to the full. You do learn to manage the condition and know what you can't and can do and when to stop...well sometimes!! Good luck and let us know how you get on 😊
Hi Helene, nothing to add as everyone has given such good advice but just to say I'm very much in the same boat! I'm 35 and been diagnosed with psoriatic arthritis. I've recently started sulfasalazine. I've got 3 children, 7, 4 and 1 and have also started a new job recently only to need time off due to a flare, luckily I only missed 2 days but felt terrible about it! Hope the methotrexate starts working and you feel better. I had a steroid injection at my last cons appt but it didn't work hopefully the meds will kick in soon!
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hopefully the meds will kick in soon!
appointment with the rheumatologist 
not a good day after the bike pic i put up would give anything today for a body like that
Starting methotrexate when feeling rubbish
Feeling guilty
Has anyone tried controlling RA without medication??
