I will be asking my rheumy to go on MTX. This drug has never been offered to me but I think I want to try it. I have been told that treating RA aggressively early on is the best way to control this dreadful disease. I was quite relived that I was considered to have mild RA back in 2014. It is 2016 and I am still not controlled and this dreadful disease has been allowed to progress. 3500mg of sulfa and 400 mg of hydroxy does not contol my disease.
Sorry for rambling on, I really don't want to stop working. I want to go back to work part time and I am lucky that I belong to a union that will allow me to work part time with almost full time pay...That being said I want to start the MTX. Suggestions on when to take it so I can work 3 to 4 days a week? I will be allowed to pick the days I will work. Any advice will be welcomed.
When I started on MTX I used to take tablets on a Saturday evening as I was usually washed out all day Sunday but meant I could cope with work.
I then tried injections but after a while I was having pretty bad reactions for days afterwards so had to come off it and I am now on biologics along with Sulphasalazine.
Personally I took it at weekends to avoid being off work but it's pretty much trial and error as you may be perfectly alright on it.
Thank you for your advice. Yes I think it's pretty much trial and error how it will effect me. I know everyone is different, I'm just hoping it will work for me.
I take mtx on a Saturday morning. I still work full time and appreciate I am one of the lucky ones that have been on sulphasalazine, hydro chloroquinine and mtx without any bad side effects. And my RA is in remission and stable, apart from one recent flare. So good luck and hope it works out well for you.
You take it once a week either in tablet form or injection. Some say you feel a bit washed out for a couple of days after taking it but I didn't notice it particularly. I think you get used to it. It has to be monitored carefully with blood test every few weeks at first but gradually its every few months. Some say it thins hair but I take cancer drug that does that so can't blame it on the MXT. It worked OK for me but had to keep increasing the dose and now it doesn't work and I have started biological drug. But I am exception and many take MXT for years and are pain free so do try. There are many drugs and we all take differently to them. I hope it enables you to keep working! Xxx
I work full-time and take mtx on Friday night before bed. Rationale being I am exhausted from work anyway so won't be going anywhere, and I will be fully 'over it' by Monday. I have fortunately few side effects from the actual ingestion (no nausea or diarrhoea or stomach cramps) I feel very sleepy on Saturday but turned it into my personal day. I stay in bed as long as I like, read, watch films, eat ice cream and sleep some more. The shops don't close early so if I feel like going to a garden centre or something later, I still can. If I took it on Saturday night Sunday would be over by time I was up and at it.
My side effects - short term fatigue, mouth ulcers, thinning hair and possibly severe photosensitivity but could be Hydroxychloroquine.. My bloods are perfect, and I suppose I am 50% improved on it.
My Hydroxychloroquine (which I love as it helped mtx along tremendously and I associate with ridding me of crushing fatigue and another 10% improvement in joint pain) gives me the runs if I don't have food, made my hair and eyebrow go white, discoloured my face to almost port wine level in patches and is ruining my reading vision. ( Not my retinas but its known to cause blurring too)
I hope you get to change, I am slipping backwards at moment and had my mtx increased two weeks ago but my feet are extremely stiff and very painful for about two hours in morning and I have recurring trochanteric bursitis and forearm tendonitis. I also have very painful wrists with swollen hands and painful thumbs, so not remission.
I know what you mean about work I'm 49 and expected to work another 15 years and I love my job. I was active in homeless charities before this and very active. What a waste to let me slowly deteriorate when I want to contribute is how I feel about it.
Yes its a waste all right. You sound similar to me drug wise but I also had to take steroids too. I got so down with pain I just stopped the steroids and let the flare up get really bad until they had to apply for funding for the biological drug. Just had first infusion yesterday and am just waiting with baited breath for it to start working. You should try to get this biological drugs as they are the best albeit most expensive. Keep pushing for better treatment. I had to. Good luck!
Oh yep missed my 3 lots of steroids since last July 😊great relief at the time but as I can't walk far or run or swim it didnt help prevent my 3 stone weight gain
Yes weight gain too. But steroids cause terrible bone damage. Met a Lady having infusion yesterday and she broke her back in 3 places from being so long on them. Didn't even have a fall. Best thing I did coming off them. Wish I had started biologicals sooner. Steroids are a cheap way of pacifying us I think. False economy if our bones break so easily.
Thank you all for your advice. I turned 50 last week and I am not ready to retire. I am thankful that I am not completely disabled, but I do need acomadations. I have submitted my HR disability papers and if approved I will be able to work less hours and keep my benefits and my wages. My HR and union has said not to worry I will be aproved. I hope so.
My side effects with hydroxy was nausea for the first 3 months. My brown curly hair went staight and blond. I was afraid of the side effects with sulfa, but to my surprise, I had none. Maybe I wont have any with MTX...fingers crossed.
I never realised til now why my hair was turning so 'blonde'. I hope MTX works for you. Its a good drug and whilst it stopped working for me I did get relief initially . but am hearing great things about the biological drugs tho it seems you have to really deteriorate before they are considered. Cost of course. Good luck!
All you ladies who work or try to carry on working whilst suffering with RA just amazes me. I enjoyed working but after getting breast cancer followed by RA I had to give up. Also now in my 60s so not much hope of getting paid work again. I do a little charity work when I am not too dog tired but doing anything more I just couldn't cope with. I hope you get all the help you need to carry on doing what you love doing. People moan about work but its not fun not being able to because of some dumb desease. Xxx
Oh Cathy I used to moan about work. I used to fantasize about taking a month off just to relax...Well I've been off on sick time since Jan 28th and I hate it!! lol..Not fun being off work and in pain..I want to try MTX. I want to go back to work so I can moan about working lol...An old Canadian saying is "I have learnt that the grass isn't always greener on the otherside of the fence."
Suzanne that green grass saying is quite well known here too. Another well known saying is 'be careful what you wish for'. We wish we were rich or whatever but if we knew there was a price to pay I think we would just be grateful for an ordinary but pain free life.
So true. Sometimes I think about all the things I used to do without a second thought. Just basic things like running down the stairs. lol
I took my dog for a walk in the park today. There were children laughing and running as they played...I really wished I could go back in time and join them....Oh the freedom of childhood.
Oh yes! I have such thoughts too. Watching a young girl doing gymnastics on the news just now and how agile and free her body is. She looks like elastic! Never was like that but I can't even run for a bus now!
I take max dose sulpha 200 mg hydroxy and 22.5mg of mtx by injection and been on steroids since last bad flare in March reduced to 7.5mg now. Oh and naproxen.
Oral mtx I had burning of my tongue and mouth and nausea. It was stopped for a few weeks then started on a low dose again. Nurses wanted me on biologics and a couple of Drs but the SPR would not approve because he said atypical RA . Anyway I inject now and had folic acid increased to 6 days. This has stopped the nausea and headaches. Only other side effects are I am really sun sensitive and my hair is going straight and lighter. The fatigue is really bad since I returned to work after 3 months off. I am only managing to work take the dogs a quick walk then I fall asleep. I find it frustrating that I cannot push myself more.
I hope you get your drugs sorted out. Sounds like you have brilliant employees. Just remember when you do go back take it easy it is hard. Btw I am 53 so still got some time to go working :(.
I never took time off work for MTX , I'd had the disease 10 years before I worked for 22 years. I've been taking MTX for 35 years. Majority of people tolerate it really well. I took the tabs on Saturdays.
They prefer you not to drink alcohol on mtx. I found that it gave me the runs but I took it on a Friday when I had weekend in front of me and the folic acid helped. They do monitor you very carefully with monthly blood tests.
I hope it works for you. That plus a biologic kept me on quite an even keel for about ten years, then my liver grumbled,
I've been on MTX for about 8 years.I take it on Sunday night.I wasn't troubled by it particularly EXCEPT for lip ulcers (one taking 6 weeks to get under control). My rheumie suggested that I take an occasional break from it if the ulcers are getting too frequent (usually only get one at a time though),so I might miss it for 2 weeks. I treat the ulcers with propolis ointment (available OC from pharmacies). Works better than the 'usual' ulcer meds for me. I found it, of all places, in Norway when on a trip OS, when OC meds wouldn't work.
The best advice the rheumie gave me was to change my folic acid from 0.5mg daily (except for the day of the MTX) to taking FIVE mg on just the days before and after the MTX dose (ie for me, Sat and Mon). This has helped enormously with the frequency of lip ulcers. I have found before that changing the dosage regime has helped with other non-PsA meds too (something to do with my metabolism). I have also been on at least 5 biologics, trying a new one when the previous didn't work/stopped working. I have been on Simponi for about 4 years now with good success. Blood tests every 6-8 weeks have always been excellent. Alcohol affects the liver too- that's why they don't recommend using it. I have been able to tolerate the odd (once a month) drink without ill-effects.
I'm a great believer in 'knowledge is power', and facing a health problem head-on. I'd rather know what I'm dealing with and then doing something about it.There are very good medical health sites online, including the Victorian Dept Health (excellent and relevant for Aussies).
I'm a bit late to this Sue so belated happy birthday, I hope it was a lovely day. I do hope you get to try MTX & more importantly it works for you without any or limited trouble. It was my second DMARD, HCQ worked well initially but less so coming up to the 1 year mark, that's when MTX was added but for some reason it didn't work so well alongside so HCQ was withdrawn which allowed MTX to romp away & take hold of the disease.
Fingers crossed for you & I hope your Rheumy listens. Great news about work too, that should help lots. x
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