Im fed up ,i been taking MTX since april not long i know,i started on 4 then to 6 now down to 4 again ,as it makes me feel sick,so much so i have to go to bed and sleep if i move it or turn over it starts it off again,i even take it over the 24hrs as suggested to try ,and still feel sick.i take 3 folic over two days ( not on MTX days.) will i was on six i started to get mouth ulcers aswell.
They are going to try me on self injection in October,as obvioulsy it will by pass
the stomach so hopefully be alot better.will it ?
Has anyone else experianced this.
hope you are all doing ok
take care
Angie
x
Written by
minxy1960
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Hi Angie. I start taking MTX by injection next week. It was a plan made by my rheumy at my last consultation in July because 17.5 was making me feel so bad. He advised me to drop back down to 15 (6 tabs) which it seems is my threshold. I also take Hydroxichloraquine and I think it's the combination of the two st a higher dose that made me so sick but it wa the worst - give me RA pain anyday - and that is saying a lot! I felt like I was boarding a ship each week on a really rough 2 day passage.
So I was fine on the lower dose but apparantly he thinks that my RA is active again so I'm moving to injections a week today. The GP told me it is to be same dose because they know I can tolerate that and it is absorbed more efficiently so hopefully more effective by injection too. Good luck to us both eh?! Tilda x
As with all matters here we are all different and need to find what works personally.
I have been on MTX since 2006-ish, now on 25mg (by 2.5 mg tabs) and have been for the last 2yrs... I think this is my upper threshold as I really do feel sick and my short term memory suffers.
I have found that taking the MTX before bed and Folic Acid (10mg) the following morning lessens (but not totally eliminates side effects... I still feel travel sick).
Hope the injection route helps you as this is something I need to investigate myself, so keep us updated, please.
All the best.
FarJer
Has it actually helped your RA? I've been on 15mg since June & while I haven't had any side effects & it doesn't seem to have have had any effect on my disease whatsoever, I'm a lot worse off than when I started.
I do take Folic Acid 6 days a week, maybe that explain things. I know that the thinking is that Folic Acid can reduce the effectiveness of MTX but that it also minimises side-effects. Perhaps you should have more Folic Acid & I should have less?
Christina x
• in reply to
Christina did you see the GP today and if so how did it go? It really does sound as if you need to be put on an increased dose of MTX and have something else added into the mix asap. If we are taking these drugs at all then it's important that we take of them and the right ones to make a difference. I hope you told the GP this. TTx
• in reply to
Thanks for concern, I'll write a quick blog, Tilda.
When first going onto MTX I was given it in tablet form. It did not help in any way to dampen down the the RA. When I switched to injectible MTX I wasn't expecting much but it was amazing the difference it made. While on it there was only the suggestion of nausea on occasion which disappeared before I noticed it.
When I spoke to my specialist nurse about this she said she had wanted to start a PowerPoint presentation on injectible MTX with "Wheel them in ... Walk them out". For many it seems to be much more effective in this form and I believe this is well documented - NRAS will probably have information on it.
Good Luck to you all - I do hope it works well for you if you get the opportunity to try it.
I too had very bad sickness on MT8 and was put onto the injectable form and it definately did make the sickness go away!!
Unfortunately for me the MT8 didn't cool down the inflammation and I started sulpasalazine and biologicals, which have proven much better.
Our Rheumies though, check your DAS score every three month to see if the treatment is working for you, so maybe when you start the new treatment make sure they see you regularly and reassess if the drug is working for you after this three month period?
Good luck and hope the injection is much better for you.
Hi ya, I'm now on 20mg 8 little tabs on mondays then take folic acid 3 times during the week, this was put up 4 weeks ago from 15mg and the swellings are stiffness is now much better, but I do suffer with feeling sick and bloated and the day after running to the loo, but on the whole apart from fatigue (which can strike as and when it pleases) I am finding it working. Originally I found no help on 10mg or 15mg over 9 months use, but started back in June on 15mg then increased to 20mg 4 weeks ago, Sorry seem to have repeated myself, but just to say stick with it one day it will work.
I have read that the most effective dose is 20mg. That's why consultants try to get us all up to that dose, as if you are going to see benefits that the dose you will see the most. If you are on a smaller dose it takes longer to see affects. However I noticed a difference with mtx within 3 wks and more benefits till i reached 20. I noticed no difference between 20 & 25mg (injectable), other than my hair being dryer.
Unfortunately for me mtx was not enough and in combination with biologicals I have had a better result.
Your placed on a dose that is most effective for you and that your body can tolerate. Its a balancing act. Most get benefits, but not all can take mtx. Personally I think if you can tolerate it, perceivere with it & get your dose upped to see how you feel
Actually I think 5 months on MTX is probably more than long enough to know if it will work or not. It should start having some effect by 12 weeks, and if it isn't, then I'd be asking rheumatologist whether it would be more useful to try one of the other DMARDs, or add in something else to the mix.
Yes, 5 months is probably more than long enough to show that MTX in tablet form is not doing the job. I certainly wondered why it should work for me via injection when it hadn't orally. I had no great expectations, but work it did and very well indeed.
This has been shown to be the case for many with RA who have been put on to the injectable form when the tablets failed to make any impression. Provided the funds are there, the Rheumatologist will try this method before moving to other drugs. If it can be tolerated MTX can be a really effective drug - it has earned its tag of 'gold standard'. Given the evidence then I would think it's definitely worth trying. It might make all the difference.
Really hope it proves to be as successful for those of you about to try it as it was for me. Jude
My Husband has been injecting himself with MTX 20mg for the last 5 months. He finds that the effectiveness of the Inj. starts to diminish after 5-6 days, but he certainly has fewer side effects than when he was on the Tab. form, he just feels a little unwell for a day or two after. Obviously not everyone is the same but hopefully the MTX Inj. will make life a little easier for you too. Good Luck.
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