Still battling the side effects of methotrexate, - NRAS

NRAS

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Still battling the side effects of methotrexate,

Titchyj profile image
8 Replies

But determined to carry on, just upped from 7.5 to 10mg, still have diarrhoea, but not quite so bad as when first started. Hands and fingers very swollen and painful, but bloods came back fine!!!

Saw OT on Thursday and she gave me splints for both hands, she will see me in 3 months time and is referring me to the Local Authority OT to assess my needs at home. She said I needed to be assessed for a bath lift as I have another medical condition which needs me to be able to bath, I am unable to at the moment, but will need to soon as need an operation which needs this facility. Still waiting for OT to get in touch.

Hope everyone is coping ok, with less pain and enjoying the sunshine.

Jan

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Titchyj profile image
Titchyj
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lab-lover profile image
lab-lover

My bloods sometimes come back fine, yet I was in a big flare when they were taken !!!

I have OT next week, think I will get splints, I have RA and OA in hands. I can't have a bath anymore..knee replacement no perfect, can get in, but not out, but at the moment I will refuse any offers of adaptations.

Hope you dont have to wait too long.... and yes, this weather is wonderful :)

Titchyj profile image
Titchyj in reply to lab-lover

Thanks lab-lover, I have both RA and OA too, in hands and feet, I got to get into bath to have a shower, I do have an hand rail to help, but can't get down into bath or back up, without my husbands help, which I'm a bit reluctant to ask for. I have found the splints help quite a bit with the pain.

Jan

Hello

Your bloods may not show any markers at this time, if you are struggling with MTX it may be a good idea and have words with the RA Nurse, she may be able to recommend a new DMARD that has less contraindications.

You have the same problem as me with bathrooms. I am still awaiting a new one as on need to be built, I have all the gear and nowhere to fit it. I have had adaptations so that I am able to get in and out, although I sometimes fall or slip..

Try and get some handrails fitted at least you will have some support a little is better than none

Good Luck

BOB

Titchyj profile image
Titchyj

Hi Bob, thanks for your reply, I have spoke to my rheumy nurse and she told me to carry on with the next dose and see how I get on, she is waiting a reply email from my consultant as to what he advises next. I am awaiting her phone call soon.

I hope you get your new bathroom soon.

Jan

Barrister profile image
Barrister

Hi Jan, I'm about to start MTX this evening. I'm not looking forward to it and have been procrastinating about starting it since last August. My doctor finally told me last week that I need to start taking it now. I am to take 7.5 mg and I feel breathless just thinking about it because I am so scared of the side effects. Stupid for a grown up to feel this way but I can't help it. My bloods are always okay but the doctor said not to worry about that. I'm very lucky with him, he understands because his sister has RA. I hope that you are feeling better soon and that the side effects stop. Clemmie

shezaroo123 profile image
shezaroo123 in reply to Barrister

Hi Clemmie can I ask for the name of the doctor you see that will prescribe MTX even thouh your bloods have always been normal please. I only ask as GP believed me to have sero negative arthritis but the rheumys that I have seen won't have a barr of this due to bloods being normal and meanwhile I am left to suffer.

Many thanks Sheryl.

Barrister profile image
Barrister in reply to shezaroo123

Hi Sheryl, I was diagnosed with seronegative RA because of my history and also I was ANA positive. My ESR has always been okay though. That was in Saudi Arabia so when I got back to the UK I asked for a second opinion and was diagnosed with PsA as there are several auto immune problems in my immediate family. My rheumatologist in the UK is in Cambridge, if that's any help. Clemmie

Titchyj profile image
Titchyj in reply to Barrister

Hello Barrister, I was told to take it 1 hour after food, which I have been doing, but have experienced diarrhoea, nausea and headaches, they eased off last week, but now I've increased to 10 mg they are back again.

Not too bad at the moment, just a little nausea and dizzy. I was the same as you in the beginning, but not as bad as I thought. I hope you get on well with MTX and you don't suffer too much, best of luck.

Jan

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