Hi everyone: I was diagnosed in 2010 after a long period of swelling in my knees. I was prescribed Sulfasalzine but reacted with severe stomach pains and my blood tests showed a high level in my liver tests. I have just been prescribed MTX and folic acid. Instructions were to take MTX on Monday and folic acid on Friday. I've read comments abouts taking the MTX at night and on a empty stomach in the morning. Now I'm confused! I've reduced my working hours to 2 days a week. I put up with the pain and difficulty walking just to be able to keep working. I moved to a small town in Essex from my home in Edinburgh last year. It has been difficult to make friends and my work colleagues just look at me (I still look normal until I try to walk) and wonder why I'm not like them. I have OA in my neck and get a lot of pain in my upper limbs. I've suffered with this for years and was sort of managing the pain, when WHAM I get the news about my knees.

The one thing that no one wants to talk about is how this is affecting my marriage. I'm 52 and this was supposed to be the time I shared with my husband. Now he has to listen to me talk about my pain, why I can't go out because I'm too tired, why I'm not interested in sex any more. He thinks that I'm still young and gorgeous but I feel old and crippled. He wants to book holidays and make plans: I can't walk without difficulty and sometime not at all due to swelling in my knees. Travelling for me now is a nightmare.

I would appreciate hearing from someone of my age and stage of disease to hear how they cope.

Thanks.
Jan

Just want to add that this advice re never taking MTX on an empty stomach came from my consultant and not from anything I had read. I do think you should ask your consultant's advice on this one, as they are all different and have a variety of ideas as to how things should be done. I'm sure if you ring your hospital and ask for either rheumatology nurse or the consultant's secretary - or even check with your GP, you will be told what is best for you.
xx

I have just spoken to Jean about this to ensure we are not at odds with what we are saying. The advice she was given by her rheumatologist was to take MTX after food. This may have been because she has other problems that might have been affected by the taking of MTX. I dug my MTX packet out a few weeks ago to check on instructions for taking the stuff when I was answering someone else and it says it can be taken any time of day but MUST be taken on an empty stomach. The reason being absorption is compromised if you have already eaten. It also suggested that a stomach protector is taken at the same time. Different consultants do sometimes have different views on some things, and also we each have different needs, so it is always worth checking with appropriate doctors/pharmacists carefully!


Hi Jan

Welcome to the forum but sorry to hear you have RA. I'm close to your age ... but have had RA for 23 years!

I'm Lyn, married, with four children all in various stages of education. We live in Thornton Cleveleys in Lancashire. As I said, I was diagnosed with sero-negative RA 23 years ago, and have run the gamut of medication and several surgical procedures along the way! Currently on a bucket load of pills and injections!

I too am suffering somewhat with bad knees so know where you are coming from on that score! However once the medication kicks in things should start to improve along with life in general. You are going through a difficult patch but things do get better! I've got crutches and a stick at the ready, just to use if I really need them. Do ask NRAS for some of their publications, they are well written and will be useful for both you and your husband.

I love travelling and the RA hasn't stopped me yet despite some difficult problems on the way. As for sex ... put the kettle on, I'd rather have a brew!

Keep posting Jan, look forward to getting to know you!

Lyn x

Hi Jan
I'm 53, and have just formally been diagnosed with RA today after 8 months of to-ing & fro-ing with GP etc, hobbling about like a rather stupid wind-up toy, and taking painkillers by bucket load - it's in hands, wrists, toes and feet but my knees are the worst bit too. Like you my husband & I had got to stage in life where we have been making "retirement" plans for all the things we wanted to do together in the future. And I was made redundant last year (just before all my problems started of course!) & was busy trying to put things in place to prepare this dream future like finding a different way to earn some money. So all in all it's been a bit of a blow that I'm still trying to work out how I manage. Husband is v supportive in theory - and has been for last month or so as it's been getting much worse and while I've been going through tests and so on. But reality is a bit different (and yes, sex - forget it! just the thought of moving about just makes me feel iller). What did help was getting him to read some of the RA material, as this did seem to make him believe me a bit more that this is serious and something we are going to have to deal with together. I tried leaving it lying about, but in the end had to say to him quite directly that it would help me to know that he'd read some of the same things I had and ask him to find the time to read it. Once he'd read it (I only asked him to read a bit) he said that it hadn't taught him anything he didn't know, but I did notice that he was a lot more understanding and patient in reality rather than just saying the right things. Just hope it lasts.

I've also been prescribed with MTX today, so have been puzzling over the no alcohol bit & hadn't thought about food/time of day!. Our social life is centred on walking, and meeting friends over glass of wine - many of whom are younger and fitter than me anyway, so the last months I've felt like a real drag on them and have virtually stopped going out. And not sure how I'm going to deal with this with partner, as tho' I wasn't a huge drinker, it was part of our relationship - sharing a bottle of wine with a meal, travelling to visit vineyards and so on.

Hello Jan,

Welcome to the forum, loads of good, friendly advice and life experiences on here. I'm Sara, 45 and 14 weeks into 15mg of MTX so I can share my experiences of it with you. I've taken it at various times of day and find late p.m. a couple of hours after lunch the best for me because after 3-4 hours I seem to go into some sort of MTX coma! At first it made me feel dreadful, headaches, nausea and very tired the next day but I'm now tolerating it much better, so perservere. It has worked, hurrah! But I still have good and bad days depending on what I've been up to, its the pacing yourself stuff that's really hard to work out. My consultant has told me to take the FA 2 days later. I also take diclofenac as and when and omeprazole to protect my stomach. My rheummy nurse said to me last week it was especially important to take the omeprazole when I take the diclofenac to stop the lining of my stomach disintegrating! Also max paracetamol to take the edge off the pain. I was also told not to drink the day before, the day of and the day after the MTX and then no more than 2-3 units a day and a couple of extra on special occasions or for fun (a quote from my consultant!) My liver is coping well on this regime!

Husbands, hmm. Mine is the most passive, supportive and understanding man in the world but......... I managed to make him angry a few weeks ago, still not sure why, he told me our lives were ruined last week, during a particularly heated exchange, and just forgets what's happening! My irritability, frustration and anger about the situation doesn't help. It's a strange time for both of you and we all cope with it in different ways. A lot of people have described it like a bereavement and my husband lost his dad last October then 3 weeks later I was diagnosed, so he's had a double dose. It takes a long time for both the physical and mental adjustment to a different rather than a ruined life, he did regret saying it!

We're off to Sri Lanka on Saturday, we deliberately left the end of the holiday flexible so we can do some travelling if I'm up to it then last weekend he started trying to plan an intensive itinerary! I have to keep reminding him what's going on, its a sort of denial and mourning for what we used to do on holiday as well as other areas of our lives. Also chatting to a friend of mine with lupus, her theory is that when we're not on top form men resort to needy, little boy lost. And sex, mostly can't be bothered, too tired and if he'd rather stay up late drinking and watching football then so be it. It takes effort to find the right time but lots of hugs and hand holding will have to suffice in the meantime.

So you're not alone Jan, I'm finding that its going to take a lot of working through on so many levels, work, leisure and relationships to get used to the hand we've been dealt and on good days I can be really positive and on bad days not so. The roller coaster is never ending but I'm determined to wring the last ounce of fun out of my life, but maybe in different ways than before.

Take care
Sara

hi Jan,

and welcome.

i'm 57 and diagnosed last June, currently taking Methotrexate and Hydroxy but unfortunately they haven't work so will be going onto Anti-TNF.

to be honest i am just about coming to terms with this awful disease now, i think the session with my Rheumy Nurse a couple of weeks ago about going onto Anti-TNF has finally brought it home to me as to where i could end up if not brought under control.

i'm not in great pain ... but i do have Osteo on my knee's and need a wheelchair for distance.

we went to an NRAS meeting at my Hospital last year and i feel this really helped my Hubby understand more as well as me, and he came into the session about the Anti-TNF as well.

i make sure we have things planned ahead ... it's easy to become cocooned in your own little World else. we love the Theatre and i've booked for a couple of shows and a break in April, all within my means of capabilities.

it is a shock not just for us but the whole Family and it does take time to adjust.

there is a Relationship Section on the Forum you might want to read through too.

keep posting there will always be someone ready to listen,

Suzanne x

Thanks everyone for your supportive comments. My husband is very supportive as I've had ongoing health issues for ever. One issue we have is that he is extremely fit--he has done IronMan Canada and USA, runs marathons and is seriously addicted to exercise. He MUST exercise or he feels awful. Although never sporty I did enjoy gardening and walking. I've never been a drinker or smoker so that's not an issue, my husband is now a non-drinker too. We eat well and I have to get my rest. He is also used to this as I had a few workplace injuries and had lengthy periods off work with soft tissue RSI injuries. I think that's one of the reasons I have OA in my neck--over use. I still work as I do get a lot out of it, but only for 2 days a week. My husband is a workaholic and he gets a lot out of his work too. The problem is I'm left on my own and I don't have many friends. I am getting to know my neighbour but she is younger than my daughter. It seems we are becoming more and more opposites. I'm just worried about the future and how I will manage if I deteriorate more. Just having a moan today. Thanks to everyone for your responses. It makes me feel less alone. BW Jan