Today I had a call from gp who had received a letter
From my consultant stating that if my bloods were fine that he wanted Mtx increased by anothe 5 mg, making it 25 mg I now Need to take. I have to say I'm dreading this as whilst my bloods may be fine, my gums bleed, my hair falls out ? (Not loads), I have constant headaches and feel so tired , all of the time.
Is this the normal dose? At this dose am I likely to see/ feel an improvement. I think if I did, I would just get on with the business of taking it but I don't want to feel this rubbishy all the time if it isn't going to do anything much for me.
Any thoughts?
Marie
Written by
Eiram50
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I would check with your nurse first but my consultant advised to to do that as taking a large dose at once made me feel really sick. I take 12.5 on Monday and the same on Tuesday.
I started mtx in Jul 2014 from 10 mg until 20 mg in Aug 2016. I was getting very much better after about 4 months. I had some side effects too, my hair fell, I had rashes on my hands and legs, I was extremely tired and dosed off during the day, I also felt/feel very sick for a day after taking mtx. I had muscle wastage and I left with only 38 kgs.
Beside the problems above, my CRP and ESR continue to reduce and the pain level was reduced slowly too. Every time when my rheumy added more mtx to me, I felt immediate pain relief the next day. Therefore I was looking forward to have the increase at that time.
In Apr 2016, when my liver markers more than double and triple the normal readings, my rheumy decided to drop my mtx to 15 mg in May 2016. My CRP and ESR already normal at that time and the pain level was about 2 to 3 then. I was very much back to my normal self.
In Aug 2016, my ESR and CRP continue to be good and the liver markers were dropped to normal reading. I continue the 15 mg mtx. My rheumy declared that I was in remission.
In Oct 2016, my liver markers went back to double, my rheumy decided to drop my mtx again to 12.5 mg. The recent visit in Jan 2017, my liver reading were great and all my readings almost perfect, my rheumy said that if my condition continue to be as good, he will drop my mtx again in 6 months time to 10 mg. I am looking forward to the reduction because I will be very sick on the day of mtx.
Basically, I followed all instruction given by my rheumy and do the regular daily yoga in the morning. In addition, I ensure that I eat health and sleep early. I will continue the same life style to avoid any flare. My rheumy always told me to do what I do and to eat what I eat. He said no supplement until he approved it.
I take chia seeds, sesame seeds power and oat in the morning to start my day. Lunch as normal rice, vegetable, fish or chicken. I hardly take any red meat. I did eliminate dairy products which I love dearly for 2 years and now occasionally I take a glass of milk, yogurt or cheese. Quite often I have cheese with toast in the morning beside the mixture of chia seeds, sesame seeds power and oat.
I hope it gives you a good inform to decide. Not to worry about the side effects, the above side effects went off after about a year for me and I was/am back to very much my normal self since.
As for the more serious side effects, they may not happen because the dosage RA patients take is very small as compare to the cancer patients dosage. So far only my liver markers went up and down a bit, I shall leave this to my rheumy to monitor it for me and I ensure I go for my blood test and the appointment will do.
I also keep an excel record to track my blood test results from day one. I also have another record to track the medication that I take so far. Also, it is always good to also keep a record of how your body feel and your improvement. All these come very handy and you can make good decision from the records your have.
Marie you don't say how long you have been on mtx, if you have not been on it for long it will take up to three months to fully get into your system. You side effects should settle down darling.xxx
My MXT increased from 20 to 22.5 and it made a difference, my RA is back under control again 😀
Each time it has increased I get the yukkies again for about three months, similar to when I started it.
I note you are still on pills - I inject and that seems to have a lot less side effects - especially the churning tummy, nausea, hair loss etc. That might be worth thinking about - injecting really made a huge difference to me.
You are having a bad time at the moment, hang on in there it will all level out in time.
I'll speak to the consultant re trying injections but it's as I say, I think I could put up with the rubbish bits if it were making a difference. However , it's now been put up to 25 so I'll give it a go.
Hi, just thought I would add my comments. I have been on MXT since diagnoses in Dec 2013. I went straight onto 15 mgs then up to 20 and 25 mgs within a short time. Took about 12 months to work and now continue on 25 mgs with no side effects at all. I am very grateful for the drugs that have helped me live a normal life. RA rarely goes away but with lifestyle changes the damage can be minimised. Good luck to you .
Hiya Marie. You probably realise 25mg is nearing the highest dose prescribed for RD. If you're taking folic acid 6 days then I would certainly ask if you could change over to injections, you'll have read here this way MTX is generally better tolerated. It's less usual to split tablets over two consecutive days but if they're reluctant for any reason to prescribe injections I would ask if this is an option.
Often the longer you take it common side effects subside. I had a little hair loss when I first started MTX, I can't honestly remember how quickly it settled but probably like you're thinking it seemed ages! But it did & it grew back wavy so it wasn't a huge concern in the end!
I'm sure if your Rheumy wasn't pretty confident you'll respond to the increase he wouldn't have recommended it so I hope he's right & you notice improvements soon. Tiredness could be the MTX or continued disease activity, I'd lean towards the latter given your Rheumy's increasing the dose. Going from 15mg to 17.5mg made quite a difference for me, surprising really for a meagre 2.5mg, but then go up to 20mg & my liver reacts, has done twice so I know it won't tolerate it. Because of not being controlled well enough (or rather still having disease activity in my feet & ankles) I had another DMARD added a few times, currently leflunomide. Maybe if you respond negatively or side effects are more bothersome on 25mg you could come back down to 20mg & try double therapy, there are options so don't worry too much. Talking to your Rheumy about your concerns is probably best. x
I think you're right and I will ask when next see rheumatologist about the possibility of injections. I also know you're right about disease being active as my hands are so swollen and sore and my back and neck increasingly stiff and painful . I'm not sure why, if double therapy may be helpful, and the consultant has said that he just can't get it under control , with the damage done happening to rapidly, why he hadn't tried this? I take enbrel , the Mtx and 80 mg arcoxia daily as well as lots of pain killers but nothing as yet is making any significant difference- sorry , been a tough week and I'm probably just feeling sorry for myself 😭
Hope things are well for both you and your husband. Once again, much appreciative of the advice.
Ah, I'd not taken into account you're on Enbrel Marie. As far as I'm aware double therapy isn't used with anti-TNF's, nor biologics. I think MTX is used because it's thought it boosts the effect, though I have heard of other DMARDs used if it's not possible for MTX to be used for any reason, intolerance or such but only singly not double therapy. So I would think that's why it's not been tried. Sorry if I've confused things.
It could well be as you've a rapidly progressive RD which isn't responding that he won't keep you on Enbrel longer than necessary, they work quicker than DMARDs so there's not the same 'waiting' time whilst they become effective. Equally you know pretty soon if it's going to be effective for you, a couple of weeks in some cases I think so dependant on time period things may change med wise anyway. Plus they're more expensive so logically cost-wise they won't keep you on something that's not working for any length of time I wouldn't think.
Seems to me you've every reason to feel as you are, it must be frightening watching damage happen so quickly so I really do hope an alternative anti-TNF or even biologic, sorry I don't know the biologics pathway if you've a particularly progressive disease. Maybe someone who's been in a similar position will be along, or start another post & ask the question.
I'm not too bad thanks for asking. Still waiting for LEF to work, coming up to 11 weeks now so hoping to notice improvements soon. My h isn't too good unfortunately but has quite a few different hospital department appointments this month so hopefully someone can help. We have a funeral service, the crem & wake this morning/afternoon then view a bungalow late afternoon so on the go today.
Take care & I hope they find 'the one' that you respond positively to soon. x
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