Told to stop methotrexate after only 3 weeks...

sugarbuttie

Hi there

After three terrible weeks on a low dose of methotrexate, I have been told to stop taking it. I struggled on the starter dose of 7.5mg in that I was in bed at 6.30pm the two nights after taking it plus all Saturday in bed exhausted last weekend.

Well...this week has topped it off! Increased dose to 10mg on Tuesday bedtime as advised. Alarm went off 7.15am the next day...got up & had to lie down again as felt like I had been hit by a train. Reset alarm to 8am thinking I could skip shower & hair wash. Woke again at 8am, stood up & felt horrendous...sickly, dizzy, completely wiped out. I am so worried about work & the looming redundancies that somehow I dragged my clothes on, put some make-up on (looked like death), sorted kids out & drove them to school. When I got back in the car after dropping them off, it hit me....pure exhaustion...I HAD to lie down.

I rang work (reluctantly) and explained I was too ill to go in despite making the attempt to get ready. I then spent the whole day asleep in bed with no energy to even lift a drink. The day after, my husband started work later & sorted kids out. Another day of complete sleep. My husband said I sounded drunk as I was slurring words.

I have had yet another day off work today & am just about getting back to normal. Still wiped out but at least I didn't sleep all day. The last time I felt so ill was when I was recovering from having my appendix out.

So....rang rheum nurse...guess what? Told to stop methotrexate & wait for appt to see rheumatologist in November with a view to trying something else. She mentioned leflunomide or gold injections.

Isn't it funny how we all react differently to stuff?? I was fine on sulphasalazine yet it made my blood count too low. Methotrexate....floored! Still ok on hydrroxy so still taking that.

Let's see what my next appt brings. I am annoyed that I have had to take 3 days off sick due to a bad reaction to a tablet but there was nothing I could do.

Have a nice weekend xx

lalla

Its tough when you get a reaction like that and have to work, hope you feel bit better now and your appt comes soon ((())) Take care Linda

Poppyg1rl

Hi Sugarbuttie,
Oh I am sorry, I really do sympathise, reactions to drugs are severe and unpredictable. Im not taking anything at the moment other than oromorph as I'm having my shoulder operated on Wednesday 19th, but normally I'm on 25mg Methotrexate Injections, 4 Sulfa tablets, anti TNF Enbrel, celebrex, amitriptyline and there are others but I'd be here all night and I've been fine on all of them, but when I tried Humira I reacted very badly. It resulted in a lovely stay in hospital on oxygen and steroid drip, I couldn't breath and it felt like my chest was exploding.
I was off everything for 6 months but by then my PA was bad, I was flaring everything had swollen and when they offered Enbrel I took it. Very happily I'm fine on it, but you're absolutely right, we are all different and so ofcourse are our reactions.
Give yourself time to recover, and I'm sure you'll be fine with your next treatment Sugarbuttie. Sending love and hugs (((((()))))) Xxx

Poppyg1rl

Apologies Sugarbuttie I meant off meds for 6 weeks NOT 6 months :oops: I'm so sorry, I blame the oromorph, lack of sleep and a shoulder that is driving me up the wall :sad: xxx

skezier

Hi S B,

thats rough flower. mtx doesn't suit everyone and hopefully the other things they are talking about will help and be ok for you so you feel a lot better.

i had a chat with my rumo last month.. mtx doesn't really suit me and been on it no at 25 injections for a while and almost a year before that on the tablets....

we are not sure its doing much but its all they offered and for me it mtx or nothing so

it knocks me as well the day after i feel a bit wished but tis the second day after that really wishes me. its hard in my case to know if its doing much cus i got the oa and pa in the same joints...... they having some slog out as well but it means none really knows which is doing what.

you hang in there and hopefully the appointment will come through quickly.

let us know what they decide especially id they go for the gold cus a mate had that and it made an incredible difference. leaving you a cyber hug and a hope. Cris x

mig

Sorry you felt so bad,i had to come off meth as i too was unwell but not as bad as you,liver count went skyhigh and i was depressed which is not like me at all.Now on lef and touch wood am doing really well on it.plenty more out there to try,hope you find something soon.thinking of you .Mig

dreamdaisy

Oh sugar, I am so, so sorry. Meth is a powerful drug and for some just too powerful. You poor thing, what a ghastly experience. Take things as easy as you can over the week-end, you need to get this grot out of your system and hopefully that won't take too long. I am thinking of you. DD

Ankyspond

Sugar keep your chin up, sorry it didn't work for you but am sure there will be something else that does. Xx

ritwren

So sorry to hear you've had such a bad reaction to the Mtx. It does'nt suit everyone but seems to help some folk. I've been on it for about 2 years or more but had the injections increased to 25 instead of 20 and so far so good in terms of blood results but I'm shattered most of the time. :roll:
Anyhow enough about me. I hope when you go to your appointment next month that they're able to give you something else which might help you. Don't be feeling guilty about taking time off work, it could'nt be helped. The important thing is that you feel better.
Take good care.

Poppyg1rl

Hi Sugarbuttie,
Just to let you know I'm still thinking of you, I hope you managed to rest and recover over the weekend? Take care Xxx

sugarbuttie

Hi everyone

Thanks for your kind replies. I am pleased to say that I am finally back in the land of the living after 4 rough days. I am showered, have straightened hair & have make up on & feel like ME again.

I feel like I have been poisoned. In the last few days when I was bedridden, I looked like death....grey skin, sunken hollow dark eyes, blemishes. I have never looked so rough in all my life. Looked as if I had been partying with Pete Doherty or something.

Today, I look & feel miles better. I am a bit worried because the nurse said the rheumatologoist may want me to try MTX again....is she having a laugh?! Surely he won't suggest this to me will he? I was slurring my words & had no energy to drink a cup of tea. How can I take that & be a wife, mother & employee....let alone keep up with the housework.

Thanks everyone. Enjoy the rest of your Sunday xx