methotrexate, sulfasalazine or hydroxychloroquine?

tilly87

Hi
new here...being diagnosed with RA was the most shocking and devastating thing for me and now im faced with the decision of what med will i take?
i hear meth may be the best one and my rheumy wants me on it but my friend who's a pharmacist scared me and said that she can't touch it otherwise she would risk infertility? and also i wont be able to drink alcohol?? and i could lose my hair? im in my twenties and like to go out with my friends.
i just want to scream

what are your experiences on these and what would be best to take??

obviously i want to be in less pain and i have no choice on taking meds otherwise i have to worry about joint damage in my twenties. someone up there really hates me. i wonder what ive done to deserve this. it would happen to someone who wants to lead an active lifestyle and is in the middle of pursuing a career. now i have to slow down when i cant if i want a career? i wonder what the point of life is and wanting to live one. now i just have to accept im in pain. im sorry to post this. i feel alone. i dont even know anyone who had this and no one in my family has this so why do i?!!!!

barbara12

Hi Tilly
Its lovely to have you on board, but I am sorry you had to find us
I am sorry I cant help with your question but I am sure someone will be along very soon that can.
We are always here to listen if you want to get things off your chest, it really does help talking to people that understand some of what you are going through
You take care xxxx.

stickywicket

Hello Tilly87. Welcome to the forum though I'm sorry you had to find us. A diagnosis of arthritis is a shock at any age but especially for young people. Unfortunately, although it is perceived as an old person's disease, this is not necessarily the case as you have discovered. The auto-immune types, especially, seem to prefer younger people, including children. I don't expect anyone, up there or down here, hates you and you've done nothing to deserve it - it's just the luck of the draw. No-one in my family had ever had it either.

You are not alone, Tilly87. You have us. We understand all too well the frustrations, the anger and, at times, the despair. You can still have a very good life, it just might not be the one you had planned. You will learn to cope with the difficulties and changes and to be perhaps a little more flexible in your plans for the future. There will be things you'll have to let go of in order to preserve the really important stuff but, in some ways, that can be beneficial to anyone whether or not they have arthritis.

As for the meds - well, I've taken both methotrexate and hydroxychloroquine for over ten years with no ill effects. My hair is, admittedly, not as thick as it used to be but is that the meth or my age? Who knows? I like my wine, though whisky is a rare treat these days. It's best to stay off alcohol for a few months until they are sure how you are/are not reacting to meth. After that, moderation is the key. You will be well monitored whatever med you take. As for your pharmacists scare story - I know of a few young women on here who have come off meth in order to have a baby then gone back on afterwards. No infertility there.

It's a lot to have to deal with at first but we will help. I very much hope you will find that life still has a great deal to offer.

Nixxy

Hi Tilly87,

Welcome aboard even if I am sure you'd rather not be here!

I believe that the key to acceptance, understanding and good decisions is information and it is so important to ask questions, especially of your GP and Rheumy. There is a wealth of info out there and the helpline team here are great to talk to. Do share experiences with others but remember that every case is different and what is ok for one person is not for another.

I developed RA when I was 22 (32 now) and have had long periods on all three meds you mentioned. Methotrexate does not cause infertility in women but does mean that you must not get pregnant while there are still traces in your system, it is advised that you stop taking it at least a year before trying to conceive but you will hear from lots of people here that have had perfectly healthy pregnancies having taken methotrexate previously. It also puts much pressure on your liver, as does alcohol, hence the advice not to have both. You will be monitored regularly and your liver function checked, it is safer to not drink but you can drink in moderation (I drank throughout and liver function was always normal but this is risky so I'm not advising!). My hair has thinned but is not noticable to anyone but me, this does really stress me though and stress triggers my flares so it's a hard call.

I would say that I was so angry about the whole thing that whenever I could cope without it I stopped taking meds, with hindsight I wish I hadn't. I do have joint damage which can't be repaired so wish I had done it differently. I found it hard to cope with so lived in denial whenever I could, I wish I had got some help to cope better and made more informed decisions. It isn't fair, it makes you feel hated and picked on and it still makes me want to scream (and I do, regularly, I at least have a good sob).

On more positive notes I have had great success with sulphasalazine, hydroxychloroquine and methotrexate, alone and in combination so solutions are out there. I have had many pain free years thanks to meds and I hope you will too. I also have a very successful career in a demanding field and so everything is still possible even with compromises.

If you want to chat to someone who also has an RA diagnosis and has struggled coming to terms with it as a young woman then I'm always here to chat to, just PM me anytime!

Nicky x

MrDJ

hi tilly and welcome to the forum.

i was in your exact same position as you 27 years ago.
was told by specialist not to plan ahead as would be in a wheelchair within 6 months. at the age of 21 that was like hitting a brick wall at 100mph.
i have had to change my life around as there are lots of things i cant do anymore but you get used to it after a while.

now a days there are lots more meds and infusions that are catching and suppressing this very destructive condition.
yes ive had lots of damage done to a lot of my joints but im still managing to work in a xray department for 31 years now and still get around all be it in pain quite a lot of the time.
it is life changing but once they sort you out with the right meds this will help.

i was put on 6 salphasalazine 25 years ago and told it would only be for a short time. im still on them now but cut down to 2 a day since my infusion started 7 years ago. i have had no side effects whatsoever on them but they affect people in different ways so its impossible to tell until you have regular blood tests.
i was also put on methotrexate quite a few years ago. was on a dose of between 15-20mg up and down. on occasions i do have a dicky tummy the next day but this normally settles after 2 days. i have noticed odd strands of hair after ive had a shower but nothing major to worry about. i think this would be more noticeable when on 25mg or more as this then goes into the region of chemo treatment where hair loss could be more noticeable. my rhumy has said they do use 25mg for short periods of time for RA but i refused it when they wanted to put me on it when i had a really bad flare up.

drinking ARGHH! yes i liked to have a good drink up but stopped drinking all together when i started mtx. you can have the odd one here and there but i decided i would rather stop and came to the understanding with my rhumy that once a year i can stop the tabs when on holiday and drink as normal which i do to the fullest (lot of catching up to do) and ive not had any adverse effects or dodgy blood result yet.

hope everything goes well for you and you are in good hands on this forum with very helpfull and understanding members. so if you ever need a moan you know where to come.
jim

resusjan

Hi,

I am on all three of these medications and have been for about 6 months now, I haven't had any really nasty side effects. The rheumy monitored my bloods really closely and, so far, everything has been ok. My hair hasn't thinned at all, or, if it has, I haven't noticed.

Hope it all works out well for you, good luck

Jan

andreaH

Hi Tilly
I also have RA and like you no one in my family has it, so does feel like why me too; i had juvinille chronic arthritis as a child, told it would disappear but now in my thirties and its still here, now RA. i have been on all the meds you mention, some worked better than others. I am on methotrexate now, have been for years and I have had a child; and I work and have a career. It has not held me back and once you are on meds it should not hold you back either. Everyone is different and is affected differently but dont let someone tell you life stops here. After reading the other posts, i agree with them-i drink in moderation, came off metho for a few months before becoming pregnant. No hair problems. sometimes i think the more bad things you hear you more you look out for it. If you didnt know that side effect you would probably never notice it. You will feel so much better once on the correct meds and can get on with living. Wish you well. xx

valval

hi not much to add but with the right meds life is so much better they do take a while to kick in good luck we are here for you val

caprica

Hey there, your post really resonated with me as I felt exactly the same as you a few years ago. I was diagnosed in 2009 at 23, i'm now 26. I had the same feelings of anger, fear, etc. I still have them when I have my low points, but most of the time I am happy and living a normal, active life. I was put on sulfa for a while, and it didnt agree with me so Ive been on hydroxychloroquine for almost 2 years now which has helped. I'd say I'm about 70% better, I get flare ups every few months but sometimes I am totally symptom free. When this all started I worried that my life would end.. it hasn't. In fact, it's changed very little. I do everything I did before - I just tend to have sore feet more than other people and sometimes problems with my hands which I can work around. I am a photographer and have a very demanding lifestyle. In fact, I'm just preparing for a 3 week trip to Peru where I will be climbing Machu Picchu. Not everyone has an easy time with this disease - we are all different. But most people will tell you that it gets easier to deal with, emotionally especially. I hope you have a lot of support around you during this difficult time.. You will feel hope again, and find happiness in life. I promise!

dreamdaisy

It may feel like the end of things Tilly, but it is and it isn't. It's a change to your life, an unwelcome one yes, but it's happened and now measures have to be taken. Your pharmacist friend has not done well by you by any means, what makes her such an expert in arthritis and its treatment with meth? I've been on both the tablet and injected form and can truthfully say that I am rarely bothered by side effects and I still enjoy the odd drink or three - but only AFTER I had established what my liver could and could not handle.

I think I'm right in saying that meth is used in considerably lower doses in treating arthritis compared to other conditions, and it can indeed affect people severely at these lower doses but if that is the case you will soon be taken off it. Likewise with sulph (which I also take) some cannot tolerate it, others like me have very little trouble. I cannot comment on the hydroxy as I have never been prescribed that. I would urge you, however, to begin something soon to hopefully minimise the effects of this condition. I went undiagnosed (and thus untreated) for seven years and the results of that are horrendous: I am sure that if I had begun the meds when the arthritis began I would be in a far better situation than I am. I hope you have looked in and seen the answers to your post, and I also hope we hear from you again soon. I wish you well. DD