Feeling really sick all the time with icy cold fingers?

Mat48

Hi - haven't been on here for a while hope you're all coping with Arther as best you can? I had a telemedicine consultation 3 weeks ago with my rheumatologist (I live on an island) and had my Methotrexate raised from 15mg to 17.5 because my ESR has been swinging between 40 and 62 for the past few months and I've had a couple of flare ups in single joints.

I also take 400mg Hydroxichloraquine as of about 2 months ago. I had been on 17.5 MTX previously but my liver played up so had to come back to 15mg. This time my liver was fine and WBCs too but the thing is that the moment I took those 7 little pills I felt really sick this time. And the nausea continued on and off for weeks especially around taking the pills. I saw a GP and she gave me some anti-emetic pills, Buccastem - and they worked a bit but made me feel very sleepy to the point I couldn't function for half a day after each one. Then yesterday having not taken any for days I woke up very sick. Had nothing in me to throw up but was retching and feeling like death warmed up all day and couldn't eat.

Also found that just as with flare ups in the joints I was getting white icy cold fingers and toes all day long. This seems to happen a lot to me no matter what the weather is like? I finally ate something tiny and managed to be really sick last night - went to bed with a fever and woke this morning feeling exhausted but no longer sick at least!

So I took an Omazeprole and a Metoclopromide (my new anti-emetic) and phoned my GP to see whether I should take this week's dose of MTX. He said to give my body a day to recover and take it first thing tomorrow instead. He suggested that as I've never had nausea from MTX before, even when on the higher dose, it was probably a gastric flu type thing and was not MTX related as both the locums had suggested it was.

Has anyone else had this experience on these drugs of nausea 24/7 having not had it for the previous 7 months of taking them? Only I've never heard of a gastric flu that lasts for 3 weeks?

stickywicket

It's good to see you again, Mat but I'm sorry things aren't too good for you.

I really can't relate to the sort of sickness you describe. In the days when I was just taking anti-inflams, with no stomach protector, I'd get a day like that of just throwing up about every 6 weeks. However, 3 weeks is a long time to have it and you've not actually increased the meth by much so it seems a bit odd - though not impossible - if it's that. (Though the additional increase in hydroxy might add to it.) I did once have gastric flu and it was just what the name implies - full on flu with the sickness thrown in. I couldn't function at all.

I also don't do the white fingers thing. Sorry, I think all you can do is what the doc says and, if it all goes pear-shaped, get back to him. Good luck.

Mat48

Thanks Stickywicket - I know my GP thought it was odd that the raise in dose by one tablet should make me ill too - having not had this side effect previously. I wish I'd been able to see him in the first place because he is very rational and the other doctors I spoke to just seemed to assume it was the MTX.

I too have had gastric flu and it was 3 days of intense vomiting each time then over whereas this has been very prolonged. I wonder if I was fighting it and then after a gruelling few weeks culminating in an intense weekend it just came to a head? I was very sick indeed yesterday - felt like I would die of nausea and couldn't keep anything down. Anyway I'm feeling a lot better tonight and hopefully when I take my 7 little pills early tomorrow morning all will be fine - or I might take them tonight as I've kept my supper down fine so think I'm okay enough. Others I know have suggested that I miss a dose but since I went up my painful ankle and sore hips have not been a problem at all so I'm keen to stick with it and see if my ESR has gone down a bit with the raised dose in a few weeks time.

I just wondered if the white fingers and general nausea rang any bells for others on here that's all. Thanks for your reply and take care. Mat xx

stickywicket

You do always take all the pills with food, don't you, Mat? One small, plain biscuit can make all the difference to me.

Mat48

Oh yes SW I certainly do! Anything that is unpleasant to swallow has to be taken with food and MTX is no exception! I took the 7 pills last thing last night with a ginger biscuit and glass of milk and woke this morning with the usual foul taste and mild nausea/ hangover but not undue nausea as I've had for the past 3 weeks yipee! Looks like it was a bug of some kind. Mat x

welshgooner

Hi there
Sorry to hear of your troubles. When I was on large doses of meth I was sick all the time. Meth has never worked for me but the rhuemy keeps prescribing it. I hate the drug but while on a combination of 15mg meth and Humira once a fortnight, I have had no ill effect although this combination is not working for me. Good luck, hope you feel better soon.
Den.

Mat48

That's a shame that the MTX doesn't help you Den. I think it's the lynchpin to all rheumatology now as some of the biologics are more effective with it so they like to keep it there in the background where possible I guess? Have you been tried on Enbrel yet? Many say that it works wonders for them - guess it's just trial and error a lot of the time but do I wish they would make decisions a bit faster and more effectively!

Methotrexate has made a big difference to my RA and I am hardly in any pain just now although my ESR was still sitting at 62 a few weeks ago so I'm hoping it's going to have come down now with the raised dose of MTX. Also hoping the Hydroxichloraquine will be making some difference soon although I'm not very convinced it's having much effect at all yet - but I've read that a combination of therapies is the way to go in treating early RA aggressively so I pushed my rheumy a bit to get a second one added in as I was flaring a lot still and struggling with liver problems which stopped me going up on MTX for a while. Mat xx

barbara12

Hi Mat
Its good to have you back, only I am sorry about the circumstances, Im not going to be much help , but I just want to add my support, I do remember you saying that you had to go to the mainland for treatment, does telemedicine consultation mean via a web cam, I have never heard it before.
I do wish you well with everything, and please let us know how you are from time to time.x

Mat48

Thanks so much Barbara. I'm fine really thanks for asking. And I do try to pop in from time to time but unfortunately it's almost always when things aren't so good.

I saw my consultant by video link - which is called Telemedicine and is used as an add on for remote or under resourced areas so patients can see their consultants more often. I have written about the experience for the NRAS magazine. It's okay as an add on but basically I haven't been see by my rheumy since I was diagnosed with RA and put on MTX in November. This is in breach of guidelines for follow up treatment of RA so I wrote to the Medical Director of our health board with a formal complaint. He wrote back eventually apologising and saying I could have a telemedicine consultation, followed hopefully by a face to face consultation at the end of the month when he comes up here for his four monthly clinics here. I haven't heard yet if I'm on the list but I darn well should be! The telemedicine was frustrating because my rheumy kept dissolving into a fountain of pixels and it was hard to hear him properly and we kept interrupting each other. The physio who examined me for him was okay but I prefer to be examined by an expert really.

It's taken me ages to get my meds sorted but I'm hoping that this 17.5 dose of MTX plus Hydroxy is now keeping the RA at bay. I haven't flared up at all for a month now and the pain in my ankle tendon plus hip/bum/ thighs have all eased off almost completely so really if this sickness is under control I'm laughing! mat x