Is there anything good to say about Methotrextate?
Posted , 9 users are following.
I have a diagnosis of seranegative Rheumatoid Arthritis from a private consultant and have my first appointment in the NHS this coming Thursday. I was advised by the private consultant that the first treatment would be a combination of Methotrexate and Hydroxychloraquine and as the private consultant leads the NHS team I'm being seen by I'm expecting this is what will be suggested. My concern is that, having read discussions here, I don't see anything good about Methotrexate! All side effects!
?Is there anyone out there who can give me a positive experience please??
?Also has anyone requested treatment of Hydroxychloraquine on its' own with positive outcomes?
?I'm tempted to request (ha ha! am I being realistic thinking they may take patient views into account?!) Sulfasalazine as an alternative to the Methotrexate as it reads from the Arthritis Research website that it may have fewer (serious) possible side effects.
?I'm new to this and want to go to my appointment with as much information as possible.
0 likes, 8 replies
Blue16 jane82242
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Debra1954 jane82242
Posted
Hi,I was put on methotrexate as soon as I was diagnosed with RA approx 9 yrs ago. I hated being on it and felt very nauseous so was changed to injecting it which did ease the nausea. After several months I just felt so unwell I asked if I could come off it and try something else. I was given information, including pamphlets to take away, on 3 alternatives and chose hydroxychloroquine (Plaquenil). I even discussed coming off all medication but was told although the decision was ultimately mine it wasn't advised. I did feel listened to which was good but I also didn't want to gamble with my health at that point so in the end stuck with Plaquenil. At my annual checks I was told my RA was being managed well. Then to come up to date after being told at my last couple of annual reviews that I was "probably in remission " and "was in remission " I decided to ask again about coming off this time Plaquenil. I had basically been fine on it with no side effects other than it seemed to strip the colour from my hair. No matter how often I coloured my hair...just to try and keep it to its natural med brown...within a very short time it would end up a brassy gingery colour. Just frustrating more than anything else. It was the RA nurse I see every 6mths who said it was OK for me to come off it.To see how I go and if things deteriorated to go back and see her and I could go back on it. She would inform the consultant I was coming off it. I have been off my medication approx 9 mths now and have been absolutely fine. I think I have the same level of tiredness/low level pain etc that I had when on it. I managed to walk briskly every day for 30 mins and gradually lost a bit of weight (much needed). I felt very happy not being on anything despite initially feeling anxious about my decision. I'm due to see the consultant sometime this month. I hope he will be happy for me to stay off it. The only problem I have right now is ...almost 8wks ago I got a very bad case of shingles on the right side of my face. Had no idea it could be so bad and still dealing with it now long after the blistering and scabs have gone. It's been a nightmare. So one of my questions to the consultant will be did I get it because my immune system is compromised. Maybe it's got nothing to do with having RA and I could have got it regardless. If I have to go back on the hydroxychloroquine then I will. I think it's the one that has the least side effects. I think psychologically I prefer not to be on meds...I have to take them for other conditions. ..but I also want to be sensible and make the right choices.You can only monitor how you feel/how you are doing and get as informed as you can...read up, ask questions...you should be listened to...do what you feel is right for you as everyone is individual and will have their own story of what worked/didn't for them.Plenty of people manage well enough on Methotrexate. I have a friend with RA who tolerates it well yet she couldn't cope on Plaquenil.
Good luck with whatever you decide.
EileenH jane82242
Posted
Many people take methotrexate at the rheumatology doses without any problems at all and it works well for them. Some of the side effects only occur at the doses used in cancer chemotherapy - which are much higher. All drugs may have unpleasant side effects - including sulphasalazine which can cause sensitivity to sunlight which can be severe. If the methotrexate turns out to be too unpleasant for you to take they will try something else - but most drugs will eventually stop working as well as they did at first so it is silly to jump in half way down the list. If it were me I would try it - you may have a pleasant surprise.
tim79598 jane82242
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martin31040 jane82242
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Missleah martin31040
Posted
This is interesting since being on MTX 8mg weekly my tummy is SO swollen & it literally feels inflamed inside if this makes sense ! What happened with you ? Did the hospital think it was the MTX ?
martin31040 Missleah
Posted
Hi, in my case the Rheumatologist started me on 15 mg took these on a Thursday felt a bit strange for next few days and on the next Thursday I was in agony with stomach pain and cramping and had been constipated all week, I had to go to A and E nearly fainted there I was put on a pain killing drip examined and doctor said there can be gut problems with methotrexate, then saw a gastric surgeon given a rigid sigmoid examination, anyway the out come no more methotrexate after this episode, so it may be the cause of problems you're having, do you think it is?.
Pasha333 jane82242
Posted
I am 54 years old and I was diagnosed with Seropositive RA in May this year.
I was told it was aggressive and they would hit it as hard as it was hitting me. I was advised that Methotrexate 10mg with Hydroxychloroquine 200mg x 2 daily was the gold standard in RA treatment.
Scared as hell I almost didn't start it and looked at everything else I could do instead.
The horror stories mounted up and all around me was negativity.
I decided to give it a go and see what happened. I was mid flare and had to have a steroid jab on the day I started Methotrexate. The date was July 9th.
I researched all I could and started self help in that I got myself on Biotin 1000ui to prevent hair loss and Omega 3 as a natural anti inflammatory. I also took acidophilus to protect my gut.
I never take MTX on an empty stomach, but always have a supper of porridge oats (to protect the gut) and then go to bed soon after.
Methotrexate didn't give me the awful side effects I had been warned about.... in fact I suffered a mild to moderate hangover until around lunchtime the following day and by week two I was fully functioning immediately on waking. Then I introduced Hydroxy - again, no side effects other than the occasional nausea wave, dealt with by taking ginger sweets.
My flare symptoms never returned and just one month later I was told the drugs were not just working, but working superbly!
And here I am today.... reducing my Naproxen as I no longer flare and only suffer minor soreness if I really overdo it. I am back at work and run at least twice a week and my fitness levels have returned.
Give MTX a go and bare in mind the horror stories but keep an open mind too. It could be your saviour x