Methotrexate

[Lynn29754]

Been on MXT since July last year, kicked in about Sept and I was doing ok. Got a cough which got steadily worse. Took me off the mXT about 6 weeks ago and since I have had about 6 flare ups. This week my knee swelled up like a balloon and is so painful I can only walk with crutches. I am waiting for a lung function test next week but the pain is unbearable and nothing seems to be touching it... taking tramadol, tried codeine, paracetamol etc... I cant stand the pain and the housebound. I have had to ring in work yet again which isnt good when they are making people redundant... I am so depressed I cannot see the point in going on... I am not living a life, I have no life

[linda55]

I'm sorry just a word of encouragement you can use crutches. .jk..I can't even have upper arm strength for that..but I sympathize with your pain n flares ..I was diagnosed in February I can't even walk..I have problems in my knees as well..I'm still b examining..but into my 3rd week of methotrexate I got ulcers on my tongue n bruising popping up..he stopped treatment. .so yayyyyyyyyyyyyy for me wonder what's next? But I have to tall you my family doctor precribed tizanidine which is a muscle relaxer n indomethacin which is a strong nsid..better then tramidol..just a suggestion you can ask..but they work very well when I had to wait to get in to see a rheumatologist. .but he also just kept me on them..my flares r bad as well..I use heat or shower..unable to get in tub gives some comfort. .I'm always flaring..he also gave me predisone but I am now off until I can do them again..cheer up..I understand n your not alone..

[02tkwillx]

I was on methotrexate for 9 weeks and developed a cough. Stopped them and took sulfasalazine for 3 months- no side effects but had no effect on my arthritis. I was in agony as my flare was continuous. Every day I thought the meds would kick in but it never did. I'm going on biologics at the end of the month. In the meantime I'm on prednisolone ( steriods) started taking them a month ago, weaned myself off and flared again. I could not use my left arm - the slightest movement was unbearable. I'm back on them now, 20mg each day. The pain is bearable now so I will be staying on them until I start biologics. I was so bad a couple of weeks ago I booked myself acupuncture, but that made it worse. biologics might be your next step. As for work, think about talking to HR. my work have been brilliant at making adjustments for me also allowing hospital apps without it effecting my attendance. Good luck

[helixhelix]

Sorry to hear that - it's so depressing if everything was working to suddenly start going backwards again so can really understand d that it's knocked you down so much. But you responded to one drug well, so good chance that you'll respond well to another one. Have you talked to your GP about how low you feel as can really help to talk this through with someone. Or you could also phone NRAS helpline, as they're great.

Also, if your knee has swollen up like a balloon is it also squishy? like filled with liquid? If so, can you phone your rheumy nurse and ask about getting it aspirated - ie they syringe out the liquid? That can make a huge difference as once there's that amount of synovial fluid sloshing about it takes ages for drugs alone to tackle it. Being in pain and having lots of inflammation is hard to deal at the best of times, and if you're worried about work as well it must be tough.

[Beverley-NRAS]

Hi Lynn29754,

Sorry to hear that you are having such a bad time of things at the moment. There have already been some good suggestions and it is encouraging as Helix said that the MTX worked for you in the first instance. But even if it turns out that this is not the right drug for you there are other DMARDs available to try. I have put a link to our article on DMARDs below for you:

nras.org.uk/getting-establi...

As far as pain relief is concerned, there are a number of options that you may be able to do. It may be worth seeing if there is Pain Clinic attached to your local hospital. Your GP can refer you. There are also some societies that deal specifically with helping people in pain. I have put the links to them below for you:

britishpainsociety.org/

painconcern.org.uk/

thepainexchange.co.uk/pages...

It can take a little while after being diagnosed to get stabilised as it can be a bit of trial and error getting the treatment right. If you are in the UK, you are protected under the 2010 Equality Act at work. I have put a link to our publication on work for you to look at:

nras.org.uk/publications/i-...

Please feel free to call the helpline and talk to us if that is possible. You can contact us on:

0800 298 7650 Monday - Friday 9.30am - 4.30pm

I do hope that things improve for you soon Lynn.

Regards

Beverley (NRAS Helpline)

[Lynn29754]

Thank you for your replies. I have had a blood test this morning to see if the inflammation markers are up and I couldnt stop crying because of the pain so I saw a doc whilst I was there.... He asked what I expected him to do ???? DUH!!!! chop my leg off... anyway upshot is he said wait until the results of the blood test come back and in the meantime he has given me liquid morphine

Last time I rang the local rheummy helpline at my local hospital I was called back by a man who I felt was rather rude and when I asked what would be available if I couldnt take MTX and he replied "wait n see", which didnt help me at all... I am loathe to call again incase he is the one who picks up my message

[Lynn29754]

When I went for blood tests friday I was upset and couldnt stop crying, in pain and so sick of not being able to walk, just got to me... blood lady got me in to see a doc to see if they could give me anything else.. he was not very helpful, asked me what I expected him to do? Then said that RA doesnt usually affect large joints just small ones like fingers wrists etc.... so he didnt think it was RA in my knee. The flare ups Ive had in the last few weeks I feel coming on and they get very painful for about 24/36 hours and then subside and go almost as quickly as it came on... does this sound like flare up to anyone else? its been in elbow, shoulder and both hands and wrists... but not both sides at the same time... again is it usual for it to be just one side?

[nomoreheels in reply to Lynn29754]

The doctor you saw, was he a Rheumatologist? It's just that whilst the smaller joints like hand & feet are generally more regularly affected RD can affect any joint, including the knees. They're joints included in the DAS 28 for goodness sake. You expected him to be sympathetic to the fact you were flaring regularly & expected him to prescribe something to help the pain & inflammation! Not very satisfactory if he was a Rheumy, you've been left medically unsupported, without a DMARD so it's little wonder you're flaring.

From my experience flares are usually symmetrical but one side can be worse than the other so maybe that's the case with you. OA can also affect the knee but it's a different kind of swelling, soft tissue rather than the fluid-filled type swelling of RD.

Are you booked in to see your Rheumy any time soon or is an appointment booked for when the blood results come back from the lab & the lung function test has been done? If the latter is the case I would either see your GP to see if he would prescribe an anti inflammatory or a short course of steroids or ring you Rheumy helpline. You're in pain so please don't be overly concerned who replies just ask to speak to your Rheumy nurse.

I hope your tests come back ok & please don't suffer, see your GP if you have no joy from the helpline.

On the positive side as has already been said you reacted well otherwise to MTX so that's a good indication for your next DMARD. I tried hydroxychloroquine first & when it became less effective I changed to MTX & been taking that 6 years now.

[Lynn29754 in reply to nomoreheels]

Thanks for the reply, it was my GP I saw not a rheumy doc. Seeing the rheumy nurse tomorrow after having lung function tests today. blood tests showed inflammation markers up. Reallu hoping that the rheumy nurse can sort me out tomorrow

[nomoreheels in reply to Lynn29754]

Unless they have a special interest in Rheumatology most GP's only know the basics from my experience. When I first changed to the GP I choose to see now she wasn't aware there was a scoring calculation but since I've needed to see her more regularly it's obvious she's been reading up &, although of course she's no Specialist, it really helps. I think your GP's manner could have been better though, it was to say the least uncaring. Even if he if wasn't within his remit to prescribe what you needed to make things more comfortable he could have explained so.

Hopefully your Rheumy nurse will be able to help you, list your symptoms so nothing's missed, bullet points so she's understands easily & can ask questions. Good luck.