Methotrexate & fatigue & other yucky stuff

[Guaparesaca]

I am really struggling with this, been on metho for a couple of years, first tablets and now jabbing myself as the nausea got too much. My pain seems to be a lot better BUT I am feeling so wiped out and it's not lifting.

I have had rheumatoid arthritis for 12 years.

Is anyone else going through this too ?

I have been pretty busy over the last few days and doing the usual level of exercise (20 min cardio session at gym/aqua aerobics/aerobics class) and I am trying to eat healthily but all I want to so is get my hands on the kitkats and snuggle up in bed.

My local hospital was going to run some special classes on the subject of fatigue & chronic conditions, run by the physio dept, has sadly had to be cancelled- no idea why.

I just needed to have a moan about it- I know I am in it for the long term and have to pace myself and at times just grin and bear it, it just bloody sucks.

Are you sure it is a side effect of the methotrexate and not a sign your RA isn't fully under control? Methotrexate didn't fully control my symptoms at a level I could tolerate it but the Dr combined the treatment with two other milder RA treatments and I was back to health. Honestly, it made a huge difference to me and I had nothing other than fatigue causing problems at that time (pre meth I had serious swellings). Another advantage was that any time my white blood count dipped slightly, they would decrease my meth for a wee while and increase the other two drugs - it seemed to work quite well. I was able to exercise for 6-7hours straight and take part in weekend long adventure races, despite having been very severely affected beforehand.

I think in the absence of swelling it is quite hard to see the fatigue as important enough to try and fix it, you just feel grateful not to be in pain. I can see so much more clearly retrospectively how good I felt on different drug combinations, especially as I had to come off everything to TTC. Now I'm pregnant and it is in remission I feel daft for tolerating so much exhaustion lately, but it creeps up on you and by the time it is bad you are too tired to make a fuss.

I know you didn't want advice but support - sorry - it does suck, you shouldn't feel bad for snuggling with chocolate, sometimes it can be the best thing to do (sending virtual kitkat)!

RunnerHasbeen thank you so much for your interesting post- I really had never thought about the RA not being properly controlled and so causing fatigue, I just assumed it was a side effect of the metho !

I had not heard of combining drug treatments either- my rheumy is always welcoming and encourages me to contact her or the nurse specialists if i need to, will get on the phone for an appt asap.

It sounds like you have really turned things around- golly, respect due for all the exercising, you must feel so much better for doing it. I love my exercise so I know what a high you can get from it and it definitely helps to lift the mood and keep in trim. That's also really good news about being in remission- I was for most of my second pregnancy and the relief I felt was massive- I had a bad experience with my first pregnancy and was really in a bad way for two thirds of it, just as well the last bit (when at my biggest) was pain free.

I am very swollen at affected joints- knees and ankles, only really goes down a bit when they get aspirated and injected with steroid, prob a couple of times a year.

i have stepped away from the kitkats (but may need them later!)

Cheers

The other drugs I was on were sulphasalzine and hydroxychloroquine. I was lucky in some ways as I work in medical research so asked for a second opinion from a doctor (not even in my city) who had run such a trial a few years earlier and he was the one who set up this regime. My original Dr seemed glad to have got the extremes under control but I was still having joints (knees mainly) drained and injected. I honestly didn't have a single joint drained on my new regime. Well, not until I came off it - I was actually quite surprised to get ill again as I'd got so used to feeling so well a small part of me thought I might have recovered (didn't admit this to anyone as I know it sounds silly).

I think that if you are still getting swollen joints and relying on injections then it is definitely the arthritis, the injections don't affect your underlying immune response and are just masking the symptoms. There are also a lot of newer, more expensive, treatment options now when methotrexate doesn't work or is contraindicated, you really shouldn't be grinning and bearing it - there is hope! NICE just approved a free three month trial of one, so it probably is a good time to go and see your consultant (and make a fuss).

Good luck!

I don't think you are silly at all for thinking you'd recovered, Runner- you'd obviously been feeling like you were before you developed RA, so healthy and strong and pain-free- a totally natural reaction, many others have felt the same. I know how it feels to be 'like back to normal' and could put up with the morning sickness and other pregnancy related stuff, all I knew was my joints felt normal and i wasn't in pain ! It just shows you how well the medication can work and how clever your body is once the right combination is found.

When I was first diagnosed, my old rheumy put me on Sulphasalzine- did the trick for a few years but I think a lot of it was inexperience and not making enough of a fuss- now I know different ! After I had my second child, my current rheumy had a long chat about other options with drugs and we came up with metho- let's see how you get on.

I hear what you say about the newer but more expensive treatments out there, just as well this 3 month trial is FREE- good old NICE, huh ?!

Thank you so much for replying, it has helped me to reconsider my strategy and will be in touch with my consultant asap.

Good luck with your pregnancy !

Guaparesaca i have been put on Plaquenil(hydroxychloroquine as i have a +ve RF. Although it has made me photosensitive it has hekped me to bend enough to put my clothes on in the moronings which i was struggling with before. Doc mentioned methotrexate but wont use it yet. Have you tried the plaquenil at 400mg per day

Hi alypaly thanks for your reply- I'm glad life's a bit easier now you are on Plaquenil, you must really have been limited before.

I haven't heard of Plaquenil, just googled it. Sounds useful, just trying to avoid reading the potential side effects, scary reading !

As well as the Methotrexate, I am taking Diclofenac, and have to remember the Omeprazole to protect my tummy.

Interesting hearing about other people's experiences- problem shared, and all that. I just wish this fog of tiredness would bugger off !

Thanks shitmagnet and love your name ! I have done a bit of reading into the whole diet thing or rather sensitivity to certain foods, just not done anything about it which is most unhelpful, 'Eat to Beat Arthritis' by Marguerite Patten.

I have a feeling this slump is just my body saying 'woah there ! Slow down FFS' as I have been trying to do loads of stuff, I need to be better at taking an easier day from time to time, forcing myself to go to bed earlier, eating better. But don't we all ?

Cheers everyone for replying, is really great to know there are other folk out there who know EXACTLY how it feels to be exhausted and in pain.

Guaparesaca shame the tablets didnt help my spelling.
Methotrexate always knocks people out as it affects the immune system and makes you more prone to catching simple illnesses. Your exhaustion is because you are fighting this illness which is pretty vague and obviously it runs your system down

Update-

have decided to take life at a slower pace and try to ask for more help AND persevere with the methotrexate, just accept I will feel like death warmed up for the 48 hours following my injection. Am thinking of calling the nurse specialist at the hospital just to pass it by her so it'll be put down on my notes. I just find it so very frustrating having less energy and inclination at times.

The other thing is a bit odd- I wonder if anyone else has had this ?- I get a strange queasy feeling right before I do the injection, don't have any difficulties about actually doing the injection and am not needle phobic but it is most definitely psychological like I dread doing it because I know how yucky I am going to feel.