Miserable

[Niclyn]

After being diagnosed with RA in October last year, was put on Methotrexate it was gradually increased to 25mg weekly and then sulfasalazine was then put in, my liver enzymes had increased also and had reached 100 at one point so was taken off everything to let things settle, liver went back to normal within 3 weeks, so they put me back on methotrexate 20mg weekly within 2 weeks my liver enzymes were sitting at 84 my mouth was full of ulcers and I have a urine infection and have low iron levels, and I feel crap, they have once again taken me off methotrexate. My joints are so sore especially hips, knees and hands, so tired and just feel sorry for myself. have had two steroid injections since October so they are not keen to give me any more. Not due to go to my consultant until 15th of May. What can I do meanwhile, any suggestions ??

[Tillytop]

I'm so sorry you are having such an awful time of it and really do feel for you. The only thing I can think of to suggest is to talk to you GP about pain med options to help tide you over until your rheumatologist appointment - though maybe these type of meds are not permitted if you have raised liver enzymes. If you don't have direct access to a rheumatologist via a helpline do you think you could ask you GP to speak to them on your behalf to ask that you be seen sooner? I think rheum depts often have emergency clinics for just this reason. If you would be potentially available to take up an appt at short notice if they have a cancellation, making them aware of that might get you seen quicker. Sorry cos I don't know if any of this is helpful and you may well have thought of these things already. But I really hope you can get onto a med/combination of meds which helps you very soon.

Tillyx

[Hidden]

One thing you can do is to prepare for that appointment. If you have any swelling take photos of it, for example, in case it goes down by the 15th.

You could also have a think about what the next step could be with medication. If you've failed to benefit by or tolerate 2 DMARDs, you might qualify for biologics. I don't know whether you have thought about such things, but if not it can help to get an angle on possible options before seeing your rheumy.

I really sympathise with your predicament. I'm on Humira but would love to still be on Methotrexate as well. Not many people seem to say this about Mtx but for me it was truly a feel-good drug. Shame my flipping liver didn't agree.

If you can, keep moving meanwhile. Swimming, walking, stretching etc. may well help ease the soreness in the large joints. And eat really well - loads of fresh veg! If I sound like I think I'm your mum, sorry! I know what it's like to feel so crap that the obvious and sensible things go out the window, but exercise, spinach and sleep might just tide you over till the appointment.

[Livingston]

Poor you. Symptomatic treatment - for the pain & the mouth ulcers sounds like a positive step, as does prep for an appointment in the future. Maybe your GP would make a physio referral as well? When I was in a lot of pain all over, floating about in the lovely warm hydrotherapy pool was very helpful. The physio who worked there was definitely not of the 'no pain, no gain' variety and she really helped me a lot.

[Chanel47]

Sorry to hear your predicament! I was in exactly the same position this time last year! Had to come off MTX and everything else because of high liver enzymes, even had liver biopsy done just to make sure meds were the reason for the problem. Off everything from mid April to mid July and joints very swollen and painful, I couldn't believe they left me so long! Had steroid injection and also one directly into my left knee as so swollen! I started Cimzia mid July and had improvement almost instantly, my joints are the best they have been since being diagnosed September 2013 and my liver levels have remained ok. I hope that this post will give you hope, that there is light at the end of the tunnel and there will be a medication to suit you!

[Niclyn in reply to Chanel47]

Thank you so much, it gives me hope

[brightangel]

Hi Niclyn,

Sorry to hear you are doing so badly, you have my sympathy.

I have a lot of epsom salt baths and if can manage it a drink of wine and music.

It makes me feel relaxed and it is medicinal (both the wine and the salts lol).

I am starting to learn to be kind to myself to help alleviate some of the crap.

My dear old mum used to say.... "If you don't look after yourself, no-one else will"

and in reality, that is true.

So....... Take care, smiley-face.