Hi Folks,
This is my 1st time posting on here and I am doing so on behalf of my husband as he isn't able at the moment as he is having a horrendous time. My husband had been taking Methotrexate for approx. 2 years now. He had to come off it briefly as his liver function wasn't too good so he came off it for aound 3 - 4 weeks and then went back on it at a lower dose (15mg) as his liver function test results came back fine and so he built this drug back up to 25mg. His quality of life really improved and for a while he was doing so good we thought the RA had gone then in September he became very ill and was rushed into hospital with a blood clot on the lung and he was then diagnosed with pneumonia. He was taken off the Methotrexate immediately as the lung specialist was sure that this was caused by the methotrexate although his Rheumatologist wasn't so sure as he felt that this complication would have raised it's ugly head long before now. In the end they concluded that it probably was the Methotrexate that caused this. The outcome of this is he has just got over the pneumonia in the last week, but because he hasn't been on any meds for the RA for 8 weeks, (apart from Prednisone) the RA is playing up big time to the point where he can hardly walk at all and the fatigue is completely unbelievable (I have never seen anything like this in my life - he can be in the middle of a sentence and the next thing he is sound asleep). He can't get a decent sleep because of the pain he is in. Anyway he saw the doctor at hospital this morning and he has to go on Leflunomide along with Prednisone and sulphasalazine starting from today and he was also given a large dose of steroid injection so I am praying that this will kick in and give him a reprieve. I believe the Leflunomide will take some time to kick in? I also picked up from a post on this forum, that it is advised to take the drug possibly in the evening to help deal with any side effects so that was helpful information - thanks.

I never realised that RA could be such a cruel disease. It has certainly reduced my husbands quality of life dramatically to a point where we don't socialise at all as he is suffering so much. I have to admit that it is having an effect on me as it just breaks my heart to see my husband in such a bad way. I was always the one with the serious health issues and my husband was my carer and he did most things around the house but it's like the blind leading the blind now and we just struggle to get through each day. My husbands employers have been a nightmare throughout his illness to a point that it has bordered on harrassment and this hasn't helped one bit.

Please understand that my husbands reaction to the Methotrexate is quite rare from what I understand so don't let this story put you off. Methotrexate is a powerful drug as you will all know but it definitely gave my husband a good quality of life - he was just unfortunate to be one of those that it caused lung problems. My husband said just the other day that if he was given a choice, he would have gladly have gone back on this drug again as it worked so well for him but he was advised against this just in case, it happened again.

Thanks for letting me air things on here. If/when my husband picks up, I am sure he will contribute to the forums himself.

Kind Regards,
Amanda on behalf of David

hi Amanda,

what a nightmare you've both been through.

yes Methotrexate is a powerful drug which is why many of us felt scared at the start to take it ... and thanks for your re-assurance that this isn't a common occurrence.

Doreen has answered your questions on the new drugs he's on and hope that when they kick in they work well for him.

yes it does change your life, i really am still coming to terms with it all nearly 6 months down the line.

and i am so sorry to hear he has had a terrible time at work that won't help you at all.

i hope the steroid injectoin works well for him as they really are a saviour if they do.

please keep posting and let us know how he's getting on,

Suzanne x

Hi Amanda and David

Welcome to the forum and sorry to hear what a difficult time you are both going through just now. As we all know on here RA is one awful disease, but thankfully there are so many drugs now available that enables our lives to be turned around, it just takes time especially when we have to change medication sometimes to get it right. I hope the leflunomide kicks in very shortly, and that the steroid jab does it job and you start feeling a little better very soon.

Best wishes Julia xx

Hi Amanda and David,

Welcome to the forum, So sorry to hear of David's plight, this is a good place to talk about how you feel and gain advice from all of us. It is devastating when the flares are really bad. I too know how bad, bad can be, 3 years ago I was very ill when 1st diagnosed. I was bedridden within 5 weeks, I went from being fit and active to an invalid who could do precious little for myself. It was horrendous a time I can never forget, but given time makes all the difference. I keep really well now having been on the triple therapy. So don't despair he wont always be as bad as he is now. I could never have believed just how much a steroid injection helped me, at that point my hands were solid and could not move at all, you can imagine the difficulties I had. I had 3 in all between Christmas and the New Year. I was upset all the time and in pain so bad I thought it would never end.

I truly hope David gets relief from the steroid injection, keep a diary to detail how he is on the meds and when he improves. It does help I kept one for the first 18 months. It really will get easier, try to not stress about work etc as this will make things worse.

Thinking about you both

Love Lorna x

Hello Amanda and David,

A warm welcome to the NRAS forum. I`m so sorry what an awful time you have both been having with the beast that is RA. As others have said, rest will help the steroid injection to kick in, and hopefully he will feel some improvement when it does.

It must have given you both an awful fright when the blood clot happened. I, too, ended up in hospital with respiratory problems finally put down to MTX, though my rheumy continually sought to persuade me that the MTX was not to blame, in spite of other medics agreeing it was. I had no more problems once it was stopped, thankfully.

I have also tried leflunomide, which sadly did not work for me and played havoc with my liver, though I know it has worked well for others.

The fatigue is something to which there doesn`t seem to be an answer, though gradually I think we do adapt, and learn how much we can and can`t do.

I hope things improve soon for you both.

Do keep posting, we are always here.

Kathleen x