Am I the only one...

rebecca1 · 19. May 2010, 04:22

Hi!. Am not sure if this is the right place. Forgive me if it's not. I'm sure i'll find my way around eventually..
I had been on Mxt for a few months but stopped it because of the nausea and weekly blood tests..I was black and blue and they were increasingly finding it harder to find veins..(I'm not afraid of needles btw..just sore with them going in and out the same arm about four times before they could squeeze enough out. I felt my life was being taken over and felt really depressed about it all. I have had a heart attack too which means I have to take a cocktail of drugs. I really do rattle.lol.
So one day stupidly decided to stop the mtx.

Anyway the upshot was of course the pain and sleepless nights came back so I was then offered the jabs. Told that because it bypasses the stomach It might help with the nausea. I had my first one on Monday morning (by the nurse till I learn to do it myself) and by 11 o'clock the sickness kicked in..yesterday was worse and last night I was vomiting all evening. Today I feel a bit better but I don't know if I can do it again. I had tried all the anti sickness pills with the tablets...even ones that cost £80 pounds each
:shock: Sadly none worked. It was just more pills and I do worry about the amount I have to take..the doctor tells me I have to weigh one against the other!
Yesterday before I was sick I had eaten ginger and rich tea biscuits in the hope it would help..but it didn't

I have asked my doctor if it will get better or if taking my FA earlier would help(i take it three days after my jab) but he won't commit either way!

If anyone is still awake after reading all this can anyone tell me if they have been through the same and can you help answer. I would be so grateful.

The thing is when I was on the tablets before they really helped but I don't know if I can go through all the side effects without knowing there is light at the end of this long dark tunnel...i am usually optimistic about my life but lately I am finding it so hard to find anything to get excited about.

Thank you for listening..

frogmorton · 19. May 2010, 04:30

Hi Larain

Poor poor you

Nothing much worse than being constantly sick with no prospect of any repreive for good behaviour.

I havent tried mtx yet (have been pretty welll ok on hydroxy) as most things make me sick - I wouldnt really want to, but like you would give it a go.

I know there are other meds you can try and I think if no-one here has any advice which helps ( I know some take the mtx at night so they 'miss' the worst of it) and the rhumie has no advice either, you will have to ask what else they can try.

I am so sorry - this must be really awful

Love

Toni xx

dreamdaisy · 19. May 2010, 04:48

You poor thing. There is no easy answer.

Rheumatic drugs are all poisons. They are toxic to the body hence the need for constant monitoring. Having said that, individual reactions to them vary quite widely. I have had pill meth, but after a few weeks developed a rash (that didn't hurt and wasn't itchy) so they took me off them. I then tried leflunomide pills but had superb headaches as a side effect, so after a few months I stopped them. I am now on injected meth (15 ml weekly, done at the hospital) and have no side effects at all. No nausea, no feeling spaced out, nothing. Mind you, it does nothing either. I have no discernible difference whether I take it or not.

If you are going to do your own jabs then that gives you some control. Some people find that if they eat before the meth they feel slightly better, and if they do it at night they sleep thro the worst of it. That is something to consider.

It is very much trial and error with these meds. I have tried (in varying combinations) sulphasalazine, celebrex, naproxen, omeprazole, meth, lef, cyclosporin, infliximab, enbrel and humira. All these take time to have an effect (2-12 weeks) usually, and when you're taken off them it takes up to 12 weeks to clear the system. It is a long, boring, tiring, exasperating, frustrating and demoralising process, but it has to be done if you want to find the mixture that may give you something resembling a life.

One drug often leads to another to deal with the side effects of the first: I take naproxen (which I'm stopping again shortly). It's an anti-inflammatory and I was put back on it to reduce pain levels in my joints. They are currently at 1 and 5, (negligible) but the pain is immense and hasn't gone away, even with the nap. Nap in turn has led to re-starting omeprazole (to protect my stomach lining) and something-I've-forgotten- the-name-of to get rid of oral thrush, (which is a side-effect of nap for me). The nap has made no difference, so if I stop it I can drop the others too. Hurrah. The thrush will go, food will taste better and I can kiss The Husband again.

This is the problem we face and you are not alone with this. We've all been there and felt the same, it is a roundabout that once you are on, you cannot get off. (Well, you can but life becomes unbearable.)

Your heart condition obviosly complicates things further - many people on these forums have other conditions too, so I'm sure there is someone out there who can help you further.

Vent and rage to us any time you like - we don't mind and we won't get cross. I'm a fairly recent recruit to these forums and the friendship and support is truly amazing. Unlike family and friends we know what you are up against and we tolerate all moods and moans! We won't get bored listening to you, we may tell you from time-to-time to pull your socks up, but that's what friends do and we'll do it politely! Keep in touch. Dreamdaisy

robertls · 19. May 2010, 04:51

Hello Larain

I'm on MTX......it took me weeks for my body to start to accept it.....
Had nausea, sickness, mouth sores..........nothing stopped it.

And several months before I really started to feel the effects, so I can sympathise with you..

Now I'm a lot lot better......Still a bit nausea after talking it.....but thats all.

At the end of the day, only you can decide.....but please take time and think about it...

Rob x

snowball · 19. May 2010, 05:34

Hi Rebbeca, I too take mtx and it makes me sick sometimes. I've had it by injection too at the moment I'm on 5mg aweek tablet form ad I take my folic acid every day except the day I take my mtx, I take my mtx just before I go to bed so I sleep through most of it. I also have ANTI-tnf treatment.
I still feel sick after taking it but I haven't been sick for a while.
Talk to your rheumy nusre and see if they can lower the dose or give you something else. Take care and please let us know how you get on.

Julie x

psyart · 19. May 2010, 05:42

Hi - am so sorry to hear that you have had bad side effects. I have suffered from bad bouts of nausa, even with anti-sick tablets, and after over a year, this started to affect me badly. now am suffering from depression, so more tablets to take!!!! but they also reduced my methx, which has helped immensly!!!! But I do my jab in the evenings after a big meal!!! I have tried different times of the day, and this is the best for me. Even when I suffered from nausa, it would affect me a couple hours after the jab, but I would go to bed and sleep through the worst of it!! The next day I might feel tired, and nausa's but it wasnt as bad - if that makes sense???!!!
my heart goes out to you - I know how bad I felt and when it came to doing my jab, I would hate it as I knew what was going to happen!!! Try doing it after a large meal in the evening. I use to drink ginger beer and eat ginger buscuits as well!! I also use to have chewing gum, as this seem to settle the nausa for a while!!! Also, most people take FA the next day and for everyday but the one when you take methx!!!! This helps the nausa aswell. I take a double dose 6 days a week. You can try that aswell???

Keep in touch and let us know how you get on.

Louise xx

rebecca1 · 19. May 2010, 06:07

Thank you all so so much...it's really good to know i'm not the only one who feels bad...
I sometimes don't want to burden my family and friends as I dont think it's fair on them...they have all their own stuff to deal with..

I am only on 5mg of fa 3 days after jab so am going to ask about it..if I can get an appointment that is..lol
I'll try having a meal before the jab and take it at night too but as the worst of the sickness is at least 24 hours later am not sure if it will help....but I will try....
I am so glad there are other people who know how bad it is and I thank god for each and everyone of you..

You might get sick of my feeling sorry for myself and ranting though I have months to let go...

frogmorton · 19. May 2010, 06:13

Hi rebecca

you have evry right to feel sorry for yourself - we don't mind - honest

At least there's some things to try

Good luck and let us know how you get on.

Love

Toni xx

lindalegs · 19. May 2010, 06:45

Hi Rebecca,

Would you ever consider taking anti-metics in suppository form? I often get bouts of sickness when I have a headache (not to do with Mtx) so I have to have anti-metics by suppository (sorry :oops: ) otherwise I just vomit them back up again, I also have painkillers in suppositories too for when I'm having a vomit-day :roll:

They are absorbed by the bowel much quicker than the stomach and might be worth a try if you're willing :?

Luv Legs

rebecca1 · 19. May 2010, 07:16

lindalegs wrote:

Hi Rebecca,

Would you ever consider taking anti-metics in suppository form? I often get bouts of sickness when I have a headache (not to do with Mtx) so I have to have anti-metics by suppository (sorry :oops: ) otherwise I just vomit them back up again, I also have painkillers in suppositories too for when I'm having a vomit-day :roll:

They are absorbed by the bowel much quicker than the stomach and might be worth a try if you're willing :?

Luv Legs

Thank you. I am going to make an appointment with my doc and will ask about that..
x.

skezier · 19. May 2010, 07:53

Hi Rebbecca,

A ((( ))) and a hope is about alli can say. i hope your gp can help and yep i do know about the blood bit.... it's really horrible?

I hope you can get some help from gp and well legs idea makes sense and not just for you :oops: You take care and nice to meet you. Cris x

deborahjane · 19. May 2010, 08:49

i stopped mxt 4 weeks ago when i had bad chest,they make me feel sick and tired,i have noticed my aches and pains have got worse.got appointment next month with rhemmy,probably tell me off for stopping them.it seems you have to either put up with pain or suffer side effects,

lindalegs · 19. May 2010, 11:43

deborahjane wrote:

i stopped mxt 4 weeks ago when i had bad chest,they make me feel sick and tired,i have noticed my aches and pains have got worse.got appointment next month with rhemmy,probably tell me off for stopping them.it seems you have to either put up with pain or suffer side effects,

Hi Deborah,

Don't know how long you've been on Mtx but side effects can settle down .....have you given them long enough?

Luv Legs

deborahjane · 20. May 2010, 06:49

lindalegs wrote:

deborahjane wrote:

i stopped mxt 4 weeks ago when i had bad chest,they make me feel sick and tired,i have noticed my aches and pains have got worse.got appointment next month with rhemmy,probably tell me off for stopping them.it seems you have to either put up with pain or suffer side effects,

Hi Deborah,

Don't know how long you've been on Mtx but side effects can settle down .....have you given them long enough?

Luv Legs

hi been taking mtx for 4 years but only just started being sick,they just made me feel tired and spaced out befor.strange how sickness only just come on,

dreamdaisy · 20. May 2010, 07:10

These are toxic drugs and everyone's tolerance varies. So far I've been lucky with injected meth because there are no side effects (or benefits), but I don't think for one moment that this will always be the case - it's just a matter of when. DD

rebecca1 · 20. May 2010, 08:34

Hi...

Thought i'd pop in and give an update...
I woke up today feeling almost human. I asked about taking folic the day after and was told it would be okay. Don't know if it's helped or if I was just lucky the vomiting only lasted a day.
I have another 10.5mg to take next Monday and think I might cope with the sickness...maybe!!...
The next week I have to go to 16.mg and am terrified the sickness might be worse than yesterday..

That i'm really not sure about..
funnily enough that's the only side effect I get....
Anyway I have a fortnight to decide..
Thank you for all your input. I really am grateful. It's great having people who are going through the same for support.
Larain.xx

dreamdaisy · 20. May 2010, 10:08

From reading others' posts it seems as tho this could only be a temporary thing - battle on and I hope you start feeling the benefit soon. DD

rebecca1 · 24. May 2010, 04:11

Hi!...i wonder if anyone can give me more advice please..

I am due to have my next Metho jab at 10 this morning.(haven't got the courage to do it myself yet so have to have it in the morning). I usually start to vomit in the evening but wondered what I could eat during the day to minimise the damage. I snacked on ginger biscuits and rich tea last week but it still hurt.
I have two meals to get through and need to have something because I take aspirin.
I just don't know what meals I can have that would be gentle on my stomach.
I don't know if anyone has had this problem but would appreciate any help.
Thank you,
Larain.xx

tkachev · 24. May 2010, 05:00

I feel like you Rebecca.Last year I opted for MTX injections but nothing improved so went back on tablets as easier to take.
It is not nice losing 48 hours to feeling so sick. I was advised to eat pasta just before taking MTX and it helped a little on thef irst day but just a bad on the 2nd.I cant take the folic acid as that makes me feel worse.
Last year I had scrambled egg on toast and that really help but the effects have now worn off. I reckon my body got used to it.
But i cannot cope with the pain of R.A so reckon it is just about worth taking the tablest as the pros outweigh the cons.I am on 20mg per week.
Best wishes
Elizabeth

Am I the only one...

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