Methotrexate - any experience anyone?

[BeansAndCheese]

My dh has just started taking methotrexate for reactive/spondyloarthritis. He has suffered with mild (undiagnosed) symptoms for probably 10 years, but for the last 6 months has had serious flare ups in multiple joints, leaving him unable to walk at times. Only treatment so far is steroid injections and nsaids. Anyone have any experience of methotrexate? What kind of side effects have you noticed? How effective was it?

Hello there. I have been taking mtx for about 18 months after trying various other disease modifying anti rheumatism drugs (dmards).

People'a reactions vary hugely but the first few weeks can be really rough and were for me. It was like pregnancy - sick, dizxy, needed to sleep all the time. Horrible. It did ease week by week but not completely so the doctor switched me onto injections rather than tablets. More hassle - weekly hospital trips atfirst, but they are now delivered to me at home and I inject myself. Doing it that way has almost completely eliminated the side effects.

My joints are much much better. Not completely ok but an inconvenience, not a disability, which they were before.

Good luck with it. These are nasty diseases.

Thanks for the quick response. Its good to have some idea of what to expect. I really hope it helps, because this last few months he has been so ill, its heartbreaking. He is hoping it might improve some issues that he didn't know were symptoms until recently, like fatigue and general aches and pains.

You also have to have frequent blood tests. Every 2 weeks until drug dose stable. You need to watch for infections and stop if get a fever and see GP urgently if unwell. But it can be a fabulous drug and prevents lots of the joint destruction that used to happen with some of the inflammatory arthitides. A lot of people feel quite nauseated on it. Some find the injection better.

Oh yes, then there's the blood tests. I forgot about that (even though I went for one today). 18 months in I've never had any bad blood results but I still need to have tests every four weeks. It does get gradually less frequent but every time they adjust your dose you go back to fortnightly again.

Sometimes it feels like quite a heavy admin burden - one more thing to manage on top of kids, work, etc. But then I remember that it's a hell of a lot better than the disease. Like musicalthreatremum says, if it works for you then it really stops (or slows down) the disease, and therefore the permanent damage to your joints. The anti-inflammatories really just treat the symptoms.

I was reluctant to take mtx for a long time for a number of reasons - the side effects, having to rule out any more babies, etc. But two things finally persuaded me - one was the doctor getting really worried about permanent joint damage, the other was "painsomnia" - being woken up by the pain at night, crawling downstairs (feet too painful to walk) in search of painkillers and ice, while the rest of the house slept. I try to remember those really bad days when moaning about side effects or having to squeeze in another trip to the hospital to get more blood taken.

DH is prescribed sulphasalisine (sp?) to control his reactive arthritis that left him on crutches unable to walk and unable to move one arm when first presented. I believe it is an alternative to methotrexate and whilst he still has to have regular blood tests he has no noticeable side effects. Worth considering?

Sulfasalazine, apparently

Yes the blood tests have been booked in, although they are slightly awkward because of Christmas. We will do the best we can to book them in. I think sulfasalazine is the other option but he will see how we get on with mtx first. He seems quite positive at the moment, probably relieved to have started on the path of treatment.

I think there's definitely a relief in having a diagnosis and having a plan. Before I was diagnosed I didn't realise that all the various things that were wrong with me were caused by one disease, so I just felt like I was falling apart. (I have psoriatic arthritis, so as well joint pain I had skin psoriasis, and nails coming away from the beds). It was good to find out that there was one cause, and a way forwards.

I've been on methotrexate for 3.5 years with minimal side effects. Although, the day after my dose, I feel extra tired. So I take it on Friday right before bed.

Little tip that makes a HUGE difference, take right before bed, it almost always eases the side effects. Also, bear in mind that initial side effects tend to wear off with this sort of drug.

Another tip is to reduce side effects, insist on folic acid (5mg) every day except the day you take the metho. Some rheumies say that folic acid once or twice a week is fine (bet they've never taken metho! ) but if you get side effects, 6 days folic acid can make a huge difference, so don't let him get fobbed off.

Yes. There is still a way to go on thr diagnosis front, because it's possible there is a bowel involvement. Maybe mild crohns disease. Because of our crazy health system, where different specialists can't talk to each other it's taking ages to get that side looked into, although it doesn't really change the treatment options. He needs to have an operation as well, which may help. Hopefully that will come through soon. The last week has been hard, because he seemed almost recovered only yo have a bad relapse on monday.

Yes I take 25mg mtx every Friday eve. I also take folic acid and now have monthly bloods.

He will probably need a chest X-ray before he starts taking it and bi weekly bloods initially.

It can cause nausea and tiredness. He will also be entitled to a free flu jab. Imalsomhad a jab for a type of pneumonia this year too.
I still get flare ups so take hydroxychloroquine daily. I also have a steroid injection every other month or so, altho I didn't respond as well to the last one as I usually do.

I found it hard initially and altho I'm not pain free, it is a lot more manageable than without it. In the early days I seemed more prone to infections but touches wood have been ok lately.

I hope it helps your DH

We administer the weekly jab to 8 year old DD once a week. She's been on it over a year now with, fingers still crossed, no major side effects. She's more prone to colds and coughs now mind you. She also takes folic acid every day apart from the mtx day.

I do worry about long term use of the drug though on her growing body :(

Thanks for the info everyone. It's good to know its mainly positive. He seems OK today after taking it yesterday, but I suppose side effects could kick in later. He's gone to work and that always makes him happy wierdo. Gakkers - only 8! That must be a massive worry. Bless her! Do childhood varieties regress in adulthood? I seem to remember that from uni. I hope so anyway! Good to know about the flu jab too. I have had one because I'm pregnant, but I wanted him to get one anyway.

If he took it yesterday and is ok today then that's a great sign. Fingers crossed for him.

Oh good! He came home from work a bit early because he was tired and achey (knees are bad at the moment) but after a little nap seems much better. Fingers crossed!