So glad to have found this forum as a newly diagnosed RA sufferer.

[hairraiser]

Hi everyone, been reading all your great postings for some advice. I was diagnosed last September and put on hydroxy for 3 months then as it wasn't doing much rheumy put me on steady build upto 25 mg methotrexate, that was 16 was weeks ago. I had recent viral eye infection so had to forego a few weeks off methotrexate, I have always worried about taking this drug and hated not being able to have a drink of alcohol and sit out in the sun anymore so have since decided not to take it anymore and am waiting to see my rheumy in few weeks. I never felt much better taking it as my real pains in my shoulder, hips and knee didn't subside only hands and wrists which I think I can live with, are there any alternatives to methotrexate as everyone seems to be put on this first? I also think that as it all happened so quickly I might be in denial about having RA as never got chance to feel the real pain I believe it's capable of. Does anyone else feel misdiagnosed or confused by it all? Sorry post is long winded.

[Hidden]

Hi there,

I understand that you have to make your own decisions but just a word of caution. There is a saying 'fear the disease, not the drugs' and whilst I hate taking drugs, I've come to the conclusion that this is the best way of looking at it. Pain is not necessarily the best indicator of what is going on. I have PsA, similar to RA, and have had relatively little pain. But I do have joint damage. The main reason for taking the drugs is to control the disease because it can mess up your body in many ways.

Some days I think there's nothing wrong with me and it has all been a big mistake - even after 2 years! I think that's the way the mind works, daft as it seems. I'd say don't dwell on pain too much - it's all too easy to believe that those who unfortunately suffer badly with pain are those who 'really' have the disease, but it doesn't work like that at all.

[hairraiser]

Hi postle thanks for your valued reply. You make some valid points. I think once I've spoken to the drs and ask more questions as I don't feel I was given the chance at last appt when was put on mxt straight away. Hopefully they can convince me that I do need these drugs. RD is such a massive life style change it's all been quite a shock as I suppose many others have found. Thanks

[shasmac]

Hi Hairraiser, I'm roughly a few months in front of you diagnosis-wise and had the same treatment/doses with Methotrexate and Hydroxy. It does take some time to actually admit you have this disease, especially when the meds reduce the pain and allow you to be more mobile. I initially had a full flare with no build up and the pain was horrendous, as most of us have experienced. The fear of ever experiencing anything like that again makes me think very seriously about taking these meds. I have always had a very jaundiced view about meds with this level of side effects but I will do or take anything that will allow me to not experience that level of pain and disability again...or even minimise the chance of it happening again.

I have however found that it is not all gloom and doom, I still enjoy my regular large red wines, don't avoid the sun (not a prob in Scotland but I go on regular foreign jaunts) and all the other 'don't things' that I enjoyed pre diagnoses and my bloods and disease reaction is absolutely fine. The one thing that absolutely affects me is stress...sends all joints, tendons etc into buzzin, fizzin alert but now I know to step back immediately when I feel it coming on.

[hairraiser in reply to shasmac]

Hi shasmac and thanks for reply. My first flare was brought on by a very stressful event and I also know it triggers it off for me too. I think I have started to panic myself about side effects and risk of infection as very prone to them. I am in pain everyday (shoulder knee and hips) and it has got worse since not taking methotrexate. I'm just like everyone else with RD wishing it away. Nice to know I'm not alone because my friends don't seem to understand how I feel about all the changes I have had to make and they think it's funny that I can't enjoy our usual nights out, we would get more respect if we had a cast on our leg!

[Philip]

Welcome to the site, there's lots and lots of lovely people here as I'm sure you'll find out.

Have fun and enjoy the support that is offered.

Philip

[hairraiser in reply to Philip]

Thank you Philip.

[Beaches2]

Hi hair raiser and welcome from me too,

I was diagnosed a few months after you and yes I still hope it has all been a big mistake and it will just go away!

Like shasmac I too had a very sudden and aggressive onset and was desperate to do whatever I had to to get it under control.

Many people get on perfectly well with methotrexate which is usually given first as the gold standard treatment but there are others that can be tried as well.....all with a list of possible side effects and most of them taking up to 3 months to get into your system and start working. They are not painkillers but disease modifying drugs, hopefully stopping the disease in its tracks.

Medics and drug companies are legally required to tell us of every possible side effect but unfortunately with rheumy depts so busy, they often don't have time to fully explain the possible consequences of not taking the drugs and leaving the disease to run riot, which in my mind would be far worse. Having a little knowledge myself of the damage this can do, I have no hesitation in swallowing down those pills!

I hope with support on here and from your rheumy team you will feel more confidant to give the drugs another try.

Good luck x

[helixhelix]

After 5+ years I still have days where I think it must be a big mistake, and want to ditch the pills. Which I tried last year and it was a dreadful decision, so am now back on them. So not something I'd recommend others try! It's a sly, slippery disease that is very hard to pin down, but the rheumy's by and large do know what they're talking about so if they think you need the drugs then you do.

As postie says this disease can mess you up more than pain in joints, as it can affect other parts of your body which you won't feel. But in the 5 years on drugs (and I take approx 80 pills a week plus MTX injection) I haven't had so much as a cold, and my hair is fine, and apart from needing a lie in the morning after my MTX injection I don't get bad side effects any more. The first year after diagnosis was hell, but I've got my life back now and it really is ok. Not quite the same as before, and I really do enjoy my weekly glass of wine on Saturdays, but it really is possible to live reasonably with this disease.

The other question to ask you rheumy is whether some of your pain is OA rather than RA, as loads of us have both. And knees are classic targets for OA, whereas RA prefers munching on hands and feet.

[hairraiser]

Thanks everyone your comments and knowledge have been great and it's really nice to know people with RA and similar can go onto hopefully live normal lives, that has given me hope and will go back to my rheumy and talk it through properly. Cheers everyone.