Me again. Am I being naive?!: As I just said I am... - NRAS

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Me again. Am I being naive?!

Nildesperandum profile image
14 Replies

As I just said I am already on steroids and will start methotrexate on Sunday. I have been reading this site for a while and find myself horrified that so many people who post regularly are on cocktails of different drugs and still in lots of pain. Am I being totally naive hoping that methotrexate is going to sort this out??!!

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Nildesperandum profile image
Nildesperandum
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14 Replies

no methotrexate works for most people and usually without too many side effects.. too. I DID very well on it for eight months but ran into problems at higher doses.. many take high doses with no real problems for MANY years. Different drugs suit different people take "different" cocktails then end result is to get best health possible with as little pain as possible x. The steroids should help whilst Methotrexate starts to work, it can take up to twelve weeks!!,

hoping your hospital pharmacy explained how to take it and the folic acid and any potential side effects to look for?? if they didnt the should have done..

Back to your otriginal question, moderation is the key with alcohol.. mtx is quite toxic to the liver and so is alcohol ..so the two together is more hassle for the liver..

Nildesperandum profile image
Nildesperandum in reply to

That's good news. Thank you. My husband picked up the drugs from the pharmacy for me so no I didn't have all the gypsies warnings, but I have been reading all the leaflets etc so I think I am all clued up. Here's hoping it does the trick!

Please keep an open mind because this disease and different people's response to drugs seem to be very, very variable. With a bit of luck you will be one of those who get on brilliantly with Methotrexate ....... plenty do! xx

Nildesperandum profile image
Nildesperandum in reply to

I will keep an open mind and pray it does the trick! The steroids have made me feel so much better, but the thought of months of trial and error feeling rubbish again has been playing on my mind!

I will say that I have been on MTX for 18 months now. I was switched to taking it by injection in September and that made a huge difference to me - but even before that this drug has really knocked my RA almost into oblivion. Unfortunately I also have toleration issues and cannot go above 17.5 mg but they could be because I have other problems with my gastric intestinal system. I had another DMARD, Hydroxichloraquine, introduced a year ago but I have now stopped taking this as it didn't appear to be making much difference. Currently I am pretty much pain free. I know it's because of the MTX because I had a month off to try and sort out other issues and I had a nasty flare up again after 3 weeks off it. Now fine again. However NICE does recommend a combination of therapies as the best way of tackling RA in the early stages - there are double and triple combined therapies and so it's not just a case of introducing more and more drugs but achieving a balance that gets someone's RA under proper control.

Don't forget the people who come on here regularly are often the minority for whom the drugs are not working properly - those who have good control for their RA and good tolerance of the drugs are probably the majority who rarely need this site! Tilda x

Nildesperandum profile image
Nildesperandum in reply to

It's good to hear from someone who has found that methotrexate has really done a good job. It makes me feel better. Thank you x

binlid profile image
binlid in reply toNildesperandum

hi iwas prescribed meth in jan as well hydroxy had no probs wih meth but have beeen taken off hydroxy probs with eyes because of it . within a week of coming off hydroxy ihad a very bad flare so got a jab thats just wering off now and im hoping i cope just on meth for now good luck

jeanabelle profile image
jeanabelle in reply to

That's because they all have a life!!!! Lucky people. I'm not being bitchy really I wish them continued success. It's just when you hear about how good a drug is and then it turns on you, repeatedly as in my case, you start to think you will never have a life ever again.

You can tell I'm not in a great place today. I have been down now for a few days. I was emailing my wee brother in America and I was trying to explain to him that I feel like I'm living in Ground hog day.........everyday is a repeat of the day before. The only thing that changes is what I have for my tea. I've started to loose weight again and I have serious difficulty remembering things, details just won't stick, I can see them flying over the top of my head. I'm off all biologicals now until the end of June when I will be put on my forth!! I am going on Abatacept, which I have only seen mentioned on here once by another blogger. So I'm in free fall at the minute.... I have this nasty, persistent feeling that I am coming to the end of known chemistry as far as biologicals are concerned. Into the bargain, I had painter in last week and whatever they did to my electrics the telly, BT Vision, hasn't worked since.......thank god for Netflix. To make matters worse a fried called last week to tell me to expect a letter about my DLA and income support. If I loose them I will not be able to afford my one luxury, my wreck of a car!!

I'm 63, where am I going to be able to work. Am I to suffer even more because a crowd of greedy leeches abused the system......see I am in another rant too.......ignore me today, just not a good few weeks. All the the to all. X

I'm really glad - and I think I'm probably in the majority but just not on this site. If you read my blogs saying how ill I feel though please don't panic. I came off methotrexate to find out and it didn't solve anything much for me except that my gut is presently reacting badly to everything including MTX. Its a brilliant drug for many people though and hopefully you will be one. If not there are plenty more to try. X

I'm into my 5th week on MTX I'm now on 10mgs. I'm also on Sulpha & Plaquenil.

I haven't had any majorside effects just feel a bit whoozy the day after I've taken it the evening before.

I saw the rheumy last week & he says that the inflammation has gone down although I haven't felt any improvement. He says it is very early days & the pain & tiredness will be the last things to improve :(

I still have to take cocodamol 3-4 times a day to function but hopefully I'm on the right track.

helixhelix profile image
helixhelix

I do very well on MTX....and got over the initial side effects relatively quickly. It did wonders for me for quite a while, but then did have to spice up my drug cocktail with a few other ingredients. But really the other drugs have just been add-ons and it's the MTX that makes the main difference. With it I can do just about anything I want, without it I'm bedridden in weeks. And I don't need painkillers any more, except when having a bad patch but that's not that often. Think positive...it should be fine. Polly

As the others say everyone is different and the difference in one persons RA to another's can be huge.

Hopefully methotrexate will be your wonder drug

Good luck

CLANCASTER profile image
CLANCASTER

Agree with the others each person has a different way with RA and reaction to treatment. I was diagnosed in 2009 and put on steroids then MTX. MTX seems to control me fairly well. To avoid the nausea I take it around 6-7pm on a Sunday evening to avoid the nausea. I am really lucky and just have stiffness and fatigue. They offered hydroxychloroquine to me but I had previously been hospitalised for the side effects it caused me when taken as an antimalarial so I declined. Nothing else has been offered so I put up with the fatigue and no longer exercise or see friends in the evening. Good luck with MTX hope it works for you.

PS I also drink alcohol but do not binge!

cazh profile image
cazh

I've been on MTX since May 2012 and although it took quite a while for the effects to be felt am now doing pretty well. I'm on 15mg per week and also take maybe 2/3 diclofenac a week but rarely need to take any painkillers. I hardly have any swollen joints and am functioning pretty normally most of the time. Even managed to go skiing earlier in the year which I never thought I'd be able to when first diagnosed. So stay hopeful.

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