Sorry to be back again with yet another dilemna but I find these anti-emetics are making me scarily drowsy. It's okay taking the evening one (although I couldn't have a social life in this state as I drop off as soon as it's disolved) but the morning one is doing my head in. Within about ten minutes of putting it between lip and gum I'm nodding off and very dizzy when I stand up and sluggish when I walk. It does work with the nausea but this is too high a price and I'm too busy for it - couldn't risk driving etc.
I did ask the GP about taking MTX by injection but she was really not keen and didn't seem to think this was a routine request at all. She looked a bit horrified at the idea to be honest - and said certainly not until I'd tried the anti-emetic option- so it obviously isn't done up here much. I will push for them but it's not going to happen any time soon and I'm going on holiday a week today and am not due to see my normal GP for over 2 weeks. I can't carry on being sleepy like this but neither can I face the return to nausea alley so what do you all think I should do over the next few weeks? Have some time off MTX? I have a really busy weekend and my GPs are both away now (she just saw me kipping in the Tesco car park and waved - how embarassing!) UGH what is life coming to where I have to take a drug that gives me side effect in order to conteract the side effect of another drug?! Sorry to vent but honestly.....!
I fully understand and get the throwing all the pills away... I've done that a few times over the years. Sadly it's never been to long before I'm introducing them again.
Hope you feel better soon, it might just be a case of giving them some time and allowing your body to become accustomed to them.
Beth xx
Hi Tilda,
I' m sorry the Buccastem, aren't good for you, I don't drive anymore, so I'm inclined not to notice whether fatigue is a side effect. I think there are quite a few anti- nausea drugs around, but the fact is, this nausea seems to be a real problem for you, perhaps it would be better to look at the MXT dosage. Why is it all so complicated!!
On a lighter note, I have read with great interest all your posts regarding singing. About 25 years ago, I workd as a costumier for English National Opera, where I learned to love all types of singing. Good luck getting the nausea under control and the choir. Take lots of care.
Jennyxx
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Wow what an amazing job Jenny! The woman who conducted us this year was called Sian Edwards and she used to conduct the ENO - have you heard of her? She has a look of a Weasley from the Harry Potters and she is really lovely to sing for - so positive with us all! I have another concert to sing in this weekend - mostly madrigals - with a visiting choir from North Carolina. I've been practicing all afternoon - well after I'd fallen asleep twice that is. My husband is working on Friday and Saturday nights so I'll have to drive myself about so I think on balance nausea is a better option than sleepiness just now! TTx
• in reply to
It's many moons ago now, Tilda, I realise, it must have been at least 30 years ago now, Charles Mackerras was musical director, and the late Rita Hunter, lead Soprano., she was lovely, never moaned at us poor girls trying to fit the costumes! Sian Edwards , is well after my time, but how wonderful to have such a talented lady as your conductor. I am quite familiar with madrigals, as my late Dad was a classical guitarist, and was fond of early English music. I wish I had a good singing voice, but the lacking, does not stop me appreciating beautiful music.
I agree regarding nausea over mobility, you could always , if you haven't already, tried a dry salty biscuit ( my Nan' s remedy)
Jennyxx
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No unfortunately the nausea goes beyond ginger or salty biscuits - I can barely eat and nothing seems to make any difference. It really is more like being seasick or car sick (both of which I suffer from). I've got a dose of it again tonight but am going to a concert so don't want to take a Buccanstem pill now. The good thing is that it stops me eating much at least which means I lose a lot of weight so perhaps nausea is to be embraced in the short term anyway! Shame you can't sing - my OH is the same but he's also got a fabulous ear! TTx
Or how about just trying the evening dose and seeing if that would be enough to keep nausea manageable? Sort of a halfway house between nausea and drowsiness? You've had such a long journey to get the MTX built up in your body that stopping it may not be too brilliant an idea. But how weird that your surgery is nonplussed about injections....maybe that's another effect of being on an island as I guess the delivery could be a bit awkward. But injectable MTX is not like biologics that have to be kept cool is it?
(Sun's shining and I've discovered that homemade rhubarb icecream is v soothing for mouth sores, so feeling much more positive.)
Px
Delighted to hear about the rhubarb icecream and mouth ulcers Polly how great is that?!
And many thanks for you thoughts Beth and Jenny. I know the difference between tiredness from RA and MTX and this type because I had years on anti-histamines and recognise the difference now. It's just like the anti-histamine one and it does say on the outside of the packet I just didn't read it properly!
This is big dose of sleepiness not fatigue or post MTX hangover that I usually get. It's rather good at night so I think I'll follow that idea through Polly but I've got another weekend of singing and driving myself about so I'll just have to risk nausea I think. Maybe the Buccastem pills will have put pay to the nausea for good as my GP was hoping they would but she has prescribed them 2 a day for 2 week -s so I was trying to stick to doctors orders. Oh well. Maybe some homemade rhubarb icecream would wake me up too?! Shame you can't send me some with a good dose of sunshine as well. TTx
I have had the MTX injections and for me they reduced the nausea a lot, and I even managed to do injections when I hate needles. I was put onto injections to stop the nausea by my rhumy. x
Oh good - that's what I'm aiming for Ozzy. I mean why am I taking one lot of pills to try and moderate the stuff that the other ones are doing when I could be injecting the MTX and not having to put up with all this hassle. I don't think I'll be too squeamish - or at least I think that the prospect of feeling sick is so awful that I'm prepared to put myself through the needle thing. At the moment it's as if I have to get on a boat once a week and stay on it knowing that the sea is really rough and sea sickness is inevitable - or I have to have these things dissolving in my mouth and feel totally incapacitated by sleepiness. I have decided to take one at night time only and avoid them for the weekend. Then I'm phoning my GP next week and going to ask him to think more about injectable MTX for me. He won't like it either probably but the alternative is stopping the MTX and I'm pretty sure that prospect will be worse to his mind too. I am hoping to be seen by my rheumy at the end of July so I can always ask him to instruct injections I hope. TTx
If you remember I was also moved onto injectable mtx due to the nausea, sickness & diarrhoea that I was experiencing for 4 days after taking oral mtx. I also don't have any of the above symptoms any more. I get fatigue for .5 of a day the following day and I have loose stools about twice a month. For me the symptoms are much reduced.
I agree with you and that's why I don't take a stomach protector as they usually have their own side affects also. I prefer to eat food before hand, and where possible like with the anti flam I take a cox2 inhibitor type which does not have an affect on your stomach.
Unfortunately we play a cat & mouse game with our drugs, as they all have some side affects!
Continue to push for the injectable type, for most it does reduce alot of the side affects, which makes the extra cost worth while in the long run.
Good luck I will keep my fingers crossed for you
J x
Thanks Sci - it's good to confirm so many on this take MTX by injection at least. My GP and the nurse made me feel a bit freaky for even asking! TTx
You have all my sympathy on this problem, having been exactly where you are in the past. I couldn't live with the mtx nausea and the Buccastem made me, not just drowsy, but completely unable to function. Neither did I find it did anything for the nausea. Injected meth seems to be very, common these days but because meth prescriptions tend to be instigated by the rheumatologist it could just be that the GP doesn't know this. Do you have a rheumatology nurse helpline at your hospital who you could ask for advice?. I know that injected meth reduces the nausea for many people - but not for me unfortunately - and I found myself doing exactly what you said and gradually missing or reducing the meth just because I couldn't face taking it. This was many years ago now and I would certainly not recommend taking that decision yourself - as I say, I did and it took a long time after that to get my RA back under any sort of control.
I can completely identify with how you are feeling about the meth vs side effects of the anti-nausea drug Tilda and it might encourage you to know that when I finally discussed with my rheumatologist what was going on, after a year and a half of struggling with the meth, he was most understanding and agreed that meth just wasn't for me. Being fairly new to this forum, I am not sure how far down the RA road you are, and what else you have tried DMARD wise. But please don't be too discouraged if you have to admit that you cannot tolerate the meth - there are lots of alternative DMARDs out there.
Really hope you can get some help with this soon Tilda.
Tillyx
Thanks so much Tilly. I admit it's a relief to learn that I'm not the only one in this situation re the Buccastem tablets - I took one last night and am okay this morning although tireder than normal, eyes twitching and a bit nauseous again today but nothing on last week. I will leave things until I see my rheumatologist at the end of July and then ask him - providing I do see him then which is never guaranteed!
I'm sorry to learn that you didn't feel any better on the injectable form. MTX has given me back the use of my hands and wrists and other joints and I feel quite indebted to it but I was only diagnosed in November after about 9 months in limbo land so am relatively new to the disease and medication. I've tried Sulphasalazine and had a very adverse reaction to it and now take Hydroxichloraquine but have only been taking it for 2 months so too soon to know if I'm getting anything from it. I suspect it's not making much difference but may be the reason that I've only had the nausea for a few weeks. Maybe the combination is too much toxicity for my body to cope with?
I know my consultant and my GP both feel that Methotrexate is the key drug for me because the difference is noticeable, especially with my hands and wrists which were playing fractured 24/7 previously. But because my ESR is still quite high at 62 he felt the dose should probably go up to 17.5 now and thats when the trouble started. I'm just hoping that the nausea settles down soon and I return to normal, side effect free soon. We will see! Take care and keep coming here it really is a great place. TIlda x
PS are you a Matilda too? If so looks like we have even more in common!
What a shame..have a BIG hug...isn't all this horrid. I really don't think they care sometimes just firing out tablets and not really realising what horrible effects they have on you..so tablets and then taking tablets to counteract things..not good. I am on Motillium now to speed things up and it helps with sickness too. Take care and hope you start to feel more yourself soon xxxx
Thanks for the hug greatfuly taken. What's Motillium Rockpool and does it make you feel drowsy? TTx
Thanks Gina. The one I was given today is Metoclopromide up to 3 a day and I've just spent the whole of Cathie's visit for dinner being sick or lying in bed feeling sick. I don't think this can be the MTX although the locum I saw today is convinced it is. It's a week tomorrow since my last dose and I don't think I'd better take any tomorrow because I can't eat a thing without it leading to me vomiting. Imagine what MTX would do?! I've just been sick again on a few raspberries with a tea spoon of pavlova (no cream) and it didn't stay there for long. Unfortunately nor has the anti-emetic but if this is a bug that's not surprising. I'm remembering that the last time I felt this awful was when I was returning from Berlin in October 2010 and got really sick on an Easy Jet flight. Shortly after that the RA kicked off and I was convinced they were connected somehow? I think there is a type of reactive arthritis which is linked to food poisoning and that's what I thought this was for ages. Locum says I'm to move back down to 15mg again for a few weeks and see how things go. I'd rather flare up than feel this sick which sounds mad but that's how awful I'm feeling! Tilda xxx
Tilda, you are having an awful time, hugs to you and hope it is resolved. I was in Portugal for June & was great. I am having flare in left ankle big ball of inflammation appeared when got home. Had bloods dne this morn and seeing GP Friday afternoon hopefully just a temporary thing, as the thoughts of more damage wrecks my head.
Have decided to stay off work long term as jst not worth it and most times am managing the whole thing better, so unless get penniless holding fast. Being called to see, I thnk you call it DLA doc end of mnth& also an insurance doc luckily I have an income continuance policy, so guaranteed 75% prev income, not bad if hubby keeps healthy.
Anyway, as turning not blog, hav to get off iPad & try & re home my foster doggy as hubs is sick of 3 wet dogs! Will rain ever stop.
Motilium AKA domperidone normally doesn't make you drowsy. You dissolve it under the tongue and can take it up to 3 times per day. I don't know Buccastem so I don't know whether drowsiness is normal. Does it say anything in information leaflet that comes in the box? You mentioned that you were going on hols soon, can you make another appt to see a GP? Hope you get this sorted out soon. You shouldn't have to put up with nausea or drowsiness. Take care
Wendy xx
Thanks Wendy. I'm leaving on Wednesday but am thinking of phoning my GP next week before I go. He's been on holiday for 2 weeks and I saw another GP last week - She's great too really but she only works part time and is on holiday from this coming week. They are both the most popular GPs so I'll never get an apt at short notice but as I need to put in a prescription order for more MTX I can ask him to phone me up and he will at some point on the same day.
I might as for this Motilium or a different anti emetic that's been suggested - a non drowsy one perhaps. And yes Buccastem says may cause drowsiness by the prescription dosage instructions and not to drive if affected. No chance of me driving after one i can hardly put one foot in front of the other! But then again I've not had a Buccastem today and am really not feeling intollerably nauseous just a bit grey and flat as usual on MTX at the end of the week. Maybe I'll just keep taking one every evening/ bedtime and see how I get on after 2 weeks when I've an apt to see my GP for bloods etc. I feel I'm just in that surgery far too much otherwise and don't want then thinking me a complete pest! TTx
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