Methotrexate Questions

tillytop

Hello all x:))

I wonder if anyone can help me with a couple of methotrexate related questions:

Has anyone tried splitting their mtx dose over a couple of days to help minimise nausea? If so, does it help any and how do you divide your dose? This was suggested to me by the consultant last time I took mtx and I thought I might give it a go.

Secondly, do any of you find that the mtx seems to "wear off" towards the end of the week? I am currently taking 12.5 mg per week which, is definitely helping, but is not enough to keep things under control and I am still relying on pred more than I would like. But I have noticed that things go downhill towards the end of the week when I am almost due for the next dose of mtx.

Any thoughts would be welcome.

Thanks!

Tilllyxxx

annie_mial

Yes, I'm on 25mg which I take in 2 lots of 12.5 (Mondays and Thursdays for me). I was also asked to try taking it 2 tabs per day Mon to Fri, but I wasn't able to take enough folic acid (even if I took 2 tabs Sat and Sun).

This was to help deal with the side effects I started to get. Annoyingly, I had been on MTX for 8 months with no problems but suddenly came out in the most horrendous mouth ulcers. As I already had thrush due to use of steroid inhalers, the combination was just too much for me and so it was suggested I split the dose.

This splitting has held out for 4 months; have begun to get the ulcers again big time. Was told to reduce to 20mg a week for a month - that's had no effect at all so far and the month is up next week. Think when I see Rheumy in the New Year it will be down to 15mg a week possibly with something else added in.

Annie

tillytop

Thanks Lynn and Annie for your replies.

Lynn I was interested to read what you said about the mtx wearing off for you too. It hadn't really ocurred to me that that might happen. Like you, I was unable, previously, to tolerate the mtx, even at really low doses but have been doing much better this time round until the most recent increase. I am increasing my dose by 2.5mgs each month until things improve, so due to increase to 15mg iin a couple of weeks.

Annie, thanks for the information about splitting your dose. I am sorry you are starting to get the ulcers again though, even with the split dose and I do hope the rheumatologist can prescribe a good addition/alternative when you go back in the new year.

Thanks both.

Love Tilly xxx

buster152

im on 20mg of mtx which i take on a tuesday night just before bed i get nausea for few days and spots on my head and chest but silly as it sounds i get worse side effects after the folic acid i take 10mg on a friday just before bed as if i take earlier they are worse

LaraSunday

Hi Tilly and all

I take 15mg on a Thursday evening, I'm in a flareup at the minute and its not working, fighting to get onto Humira. (on stupid about of different things that dont work)

I found taking the folic acid a day later rather than 2 days later helped sometimes, now i seem to only get ill for a day or two and not too bad but its not having much affect on my as anymore. Make sure you eat a good breakfast if you can (porridge is always good if you like it)

I get mouth ulcers pertty bad and my feet came out in blisters as well its very weird and sore I was lucky it was in the summer. Either try Deflam or as an organic alternative Weleda do a Medicinal Gargle which is great for the mouth ulcers and for the feet or other skin blistering you may need a steroid cream and for relief there's a lotion the chemist can provide but i cant remember its name off hand but it was great. I'll post it when i remember.

Not sure if any of this is any use but I hope you feel better soon : )

cthornley

buster152 wrote:

im on 20mg of mtx which i take on a tuesday night just before bed i get nausea for few days and spots on my head and chest but silly as it sounds i get worse side effects after the folic acid i take 10mg on a friday just before bed as if i take earlier they are worse

Buster you shouldn't be getting side effects from the folic acid (these are extremely extremely rare ) as it is to replace the folic acid that you should have in your body normally but is depleted by the MTX - and mostly if your going to have Folic Acid side effects its from injected Folate at 15mg or above.
Can I ask why you are on 10mg as it is more usual to start at 5mg and only increase it if your body is having serious trouble with the MTX - this may not be helping and it might be worth exploring a lower dose if you feel you are having a problem with it - I would talk to your dr about this as this is not normal
chrissie

tillytop

Thanks Buster, LaraSunday and Chrissie for your helpful replies and tips! And welcome to the forum Lara. Really hope you get your Humira soon and that it gives you some relief.

Love Tilly xxx

buster152

cthornley wrote:

buster152 wrote:

im on 20mg of mtx which i take on a tuesday night just before bed i get nausea for few days and spots on my head and chest but silly as it sounds i get worse side effects after the folic acid i take 10mg on a friday just before bed as if i take earlier they are worse

Buster you shouldn't be getting side effects from the folic acid (these are extremely extremely rare ) as it is to replace the folic acid that you should have in your body normally but is depleted by the MTX - and mostly if your going to have Folic Acid side effects its from injected Folate at 15mg or above.
Can I ask why you are on 10mg as it is more usual to start at 5mg and only increase it if your body is having serious trouble with the MTX - this may not be helping and it might be worth exploring a lower dose if you feel you are having a problem with it - I would talk to your dr about this as this is not normal
chrissie

hi
yes i know i shouldnt but i do and if i dont have them just after eating they are a lot worse the rheumy gave me the dose that why i take that amount

mp1952

Hi Buster

I've not heard of people on methotrexate taking 10 mgs of folic acid in one dose.. I wonder if taking 5 mgs on consecutive days (say day 3 and 4 after methotrex) might improve things for you? Perhaps query that with your rheumy next time you see him/her??

I just take 5 mgs on day 3 after my injection..

Best wishes

Marion

alarkra

Hi Tilly,

I am now on 20mg of MTX. When I started out, I split my dose from the beginning, taking 1/2 on the Monday morning, then the other 1/2 on the Tuesday morning. As I got used to it I would take it Monday morn then Monday night. I now take it all at once on the Sunday evening as I found taking them on the Monday made me really groggy and high for the start of the working week (no one really noticed, but it's not really ideal!) so I've built it up over time. I have not suffered nausia and take it after food, but I sometimes feel generally unwell for 48 hours, but I always convince myself that I am taking it because it's a much lesser evil than the full-on RA symptoms. I also take folic acid around 3 - 4 days after the 2nd 1/2 of the dose... although I must say that it's the one med I forget to take the most, which I know is bad as I must be careful not to get bigger complications as time goes on.

I suggest that you split the doses for a while (my Rheumy suggested this to me and said that it's absolutely fine to do so as long as I always take the full dose within 48 hours, but everyone is different, however, I shouldn't think that it would be a problem if you did the same, as long as you take the dose you need over this time). Probably best to take it in the evenings, after eating, so then you can sleep on it...

Please do let us know if this helps you at all. Hope you feel better soon. (((HUGS))) xx

tillytop

Thanks for your post Alarkra

I was most interested to read what you say about splitting the dose and what your consultant said about it being ok so long as you take the full dose within 48 hours. I also really like your positive attitude about mtx being better than the full-on RA symptoms.

I have had little nausea at all until this last dose increase. It’s still not been too bad but I’m not looking forward to the next mtx increase and, if I find that I have a real problem, I will try splitting the dose and see what happens.

I saw on another thread that you are currently taking three drugs and are hoping to see more improvement - really hope you do. But, if you do find yourself in a position where you are going onto anti-tnf drugs, I hope you find they help you as much as they did me. I had Infliximab (for 5 years) and Humira (for 3 years) and, although, over time, I became allergic to both and had to stop taking them I wouldn't have missed those years of RA improvement for anything.

Thanks so much for the info and the tips on the timing of taking the mtx.

Love Tilly xxx