Rheumatoid Arthritis

I dont personally have any experience, but if you look out for Clodders she does ?

My husband has had RA since he was about 10. He is 35 now. Looking at him, the only outside sign that something isn't right is that he has fused wrists and a small limp.

He'd been fine for years and took only pain relief (which was his biggest problem) until this summer when he suffered a flare up following a bout of salmonella. For about 6 weeks he had to have increased pain medication until we arrived in DK where he has since been put on methetroxate. It won't make him infertile but basically we can't start a family until after he's come off it for a good 6 months (basically its connected with birth deformities).

Side effects, in general there are hardly any. is your H also getting Folimet? H has to take this the day after he has taken his mx which backs up the immune system so he doesn't get sick too much.

He probably won't need to take it for the rest of his life, just it controls the inflamation which is the problem. blood tests every 2 weeks are only in the beginning to ensure that the body can cope with the mx. then they become every 6 weeks to monitor the inflamation and the effect on the liver.

My advice to you is don't treat him any differently, just understand there may be some difficulties and don't be worried. Be happy that he's been diagnosed and its treatable, its not a life sentence and can be managed.

If you want to chat about it, or have any more questions you can email/pm me. H has years of experiences that he can pass on.

Edited to add this link which has loads of info plus some forum boards dedicated to different forms of arthritis. https://www.versusarthritis.org

Hi

Very sorry to hear of your husbands diagnosis,Sadly Arthritis is not just an old persons disease as so many people think.

I know how scared you must both feel right now and how terrified you are at the thought of the Methotrexate,I have been on it over 10 years now..Its not nearly as scary as I first thought and I dont get any more colds or illnesses than anyone else(I thought I would have to live in a bubble in the begining)

Also good news it should not make him infertile,however you should not try for a baby till he has been off it for over a year,As it can cause birth defects.

I have the flu jab and blood tests every fortnight and have so far been ok(apart from once after a really really heavy drinking week binge)I do drink weekly without any probs.

New meds are coming out all the time and now you have a firm diagnosis things should start to get better(Is it just his hands that are affected?)

Im also on one of the newer meds Anti Tnf(Infliximab),Its also an immunosuppresent but works on T cells,Its fab and has totally transformed my life,I also take steroids daily and painkillers.

Im 36 now but have had Arthritis since I was 16,sadly for me im an "extreme case" but as I said the new meds are amazing.

If you want any info ,or your husband wants to chat with someone in the same boat.Pm me anytime.I am a member of many arthritis forums and have tried most of the meds you will be offered.

xx

Thanks ever so much for both the replies. It is just such a huge shock and the drug sounded so terrifying at first, you have reassued me it's not so thank you. I have been so upset these last few days worrying about it.

We don't really know to much at the moment, I think they were just going to see how he goes on the tablets and take it from there. He has been advised to take folic acid and also cod liver oil but apart form that, it's all we know for now. I think H's main concern is can he ever have more than 2 pints????!!!!!!

We do also have 2 lovely children but have been trying to get pregnant for the last few months so that is on hold for now and possibly forever, but Like I say, we have 2 kids already so I'm grateful for that obviously.

Thanks again for the replies, it helps a lot

Well bearing in mind that the blood tests are checking liver functions (hence why every two weeks) it is probably sensible to not drink initially as this may put additional strain on his liver. But after a few months of being clear on the blood tests there's no reason why he can't have some drinks. And as H has just rightly pointed out to me, he managed to drink unreasonably when he was taking MX in his early 20's at uni. ?

Hi there,

My H has been on methotrexate for 5 years now, he is 34 now, and we had the same concerns as you, and it is frightening at first, but it will get easier.

I haven't got much else to add to the great advice you have already been given, but just wanted to give you a bit of hope on the baby front.

Our NHS trust actually reduced the number of months to come off the tablets before trying for a baby from 6 to 4 for men (6 for women) just before we decided to TTC. We started TTC after 5 months of my H being off them (we comprised!!) and we now have a very happy and healthy 17 month old. My H did have to have steroid injections, as the effects of being off the tablets did start after 4 months, but the injections helped.

However, just before I fell pregnant his consultant referred us to our local fertility clinic, whereby he gave a sample to freeze so that if the pain got too bad, he could go back on the tablets and we could then try IVF or ICSI. Luckily for us, I fell pregnant 1 week after he gave the sample, which means that it's still there to use for next time! So this might be an idea for you to do now, before he starts on the methotraxate?

I hope that all makes sense! You are welcome to PM me if you want to ask anything

Jen x

PS - My H definitely has more than 2 pints when he goes out!

Hi, my family suffers badly with this but my exp of MXT is from a psoriasis point of view and it may be worth looking at www.psoriasis-help.org.uk for side effects too. they give it to us as it suppresses the immune system, as psoriasis is an auto-immune problem too. I was offered it last year, but I got alt. treatment. Most people I know on it seem okay apart from the drinking thing. I'm pleased the TTC thing has been downgraded as this scared the bejeezus out of me wheen I was offered it. but, like my condition, sometimes getting relief from you symptoms is the main thing. Good luck honey, keep us posted, we're here for you xxxx

I have an inflammatory arthritis (likely RA) which affects my toes, ankles, knees, hips, shoulders, neck, jaw, fingers, wrist and elbows. I'm 29 but have had the symptoms since I was 12. A diagnosis was a relief although RA is a scary prospect for the future.

I find the exhaustion and depression the hardest things to deal with and so for now have settled with just Etolodac to minimise side effects.

My best advice is to keep on top of the symptom with whatever drugs are offered and to never underestimate how many areas of your life it may affect. It doesn't have to be completely negative though - at least there is a dianosis with a solution.

I worked for a very short time, quite a while ago with people who had a diagnosis of RA. The two things I would recommend reading about are Joint Protection techniques and Fatigue Management.

Joint Protection is very specific to RA and includes things like the correct way to open jars to stop ulnar deviation and holding plates to stop deformities like swan necking. Prevention is better than cure. Using wrist supports if carrying out heavy work.

Fatigue Management is the same for whatever diagnosis you have. it's about planning your day and trying not to do too much at once. i.e. doing a small amount of gardening over different days rather than doing it all at once.

Occupational Therapists have small pieces of equipment to assist with every day tasks. Like tap turners, pan baskets to put veg into so you pull out the basket rather than try and lift the whole pan of water and veg, jar openers etc. They can also advise on FM and JT. A positive attitude does help greatly.