Start of methotrexate

[Griggser]

I saw my rheumy this last week and he has put me on 10mg a week of methotrexate but building up to 20mg. I have to keep on with the predisolone at 20mg as well for the time being. Discussed this all with my Doctor this week, to get the prescription, and he has put me on a weekly blood test regime. Curiously my inflammation marker was low at 3.6 which for me was strange as I have been reducing the pred down to 20mg over the last few weeks and have felt really awful. Absolutely exhausted and headache every day. Sleep is disturbed either by hip / shoulder pain or the headaches. This was discussed with the rheumy and Dr but both feel it is not GCA. I have been signed off work for a couple of weeks as needed to come home after a few hours and have a sleep. Luckily work are very good and I have been able to get away when I need to. Seems I will have a discussion with my boss about it next week. I must say even after a couple of days of not going to work I feel better but that could just be in my mind?

One thing I am a bit concerned about is taking prednisolone, methotrexate, androlic acid (once a week) and folic acid (once a week) and wondered if taking the methotrexate on a Saturday each week and then the androlic & folic acid on the Sunday was OK? I also don't like taking paracetamol for the headaches as I worry about all these chemicals in my system. I think it's going to be hard giving up alcohol to enable me to take methotrexate as a few glasses of wine are looked forward to.

I'm also trying to change my diet and am eating a lot more fish and reducing carbs as much as I can but can't seem to get in the habit of eating enough fruit or drink enough water but at least I'm aware of it so hopefully will get there. Exercise is pretty much non existent apart from the odd stroll and my way of relaxing is cooking which is not helpful on the weight front. If only they could prescribe motivation tablets as I feel I want to exercise but just can't work up the enthusiasm. Probably due to feeling really rough the day after when we have been for a longer walk.

I believe the plan is to give the methotrexate time to kick in, 6 - 8 weeks and then come off the prednisolone. I assume that also means the androlic acid can stop?

I have to laugh I just re read my script before posting and noticed auto correct had changed folic to frolic, if only that we're true!

[PMRpro Ambassador]

Frolic acid? If there's any going I'll have some of that!

I would ask the pharmacist about taking the various drugs at what times - but I wouldn't think there is any reason why not to take them on consecutive days.

Don't worry about eating fruit - it's fructose too and some should really be classified as less good for you. As long as you eat plenty of veg you'll get all you need in the way of vitamins without sugars. As for the five a day - in the USA they say 7 and totally different portion sizes and other countries don't specify anything. The "5" and the portion size were just numbers plucked out of thin air with no research or studies that provide any backing for it at all! If you ask any of the government bods who thought it up they go round in circles: Why should I eat 5 a day? - "Because its a healthy diet" - "But WHY is this a healthy diet?" - "Because you are eating plenty of fruit and veg..." They never can quote a REASON for it. Nuts!!!! Oh yes - and they ARE good for you!

And don't worry about "exercise" - just try to walk as briskly as you can (yes, I know, I had months on crutches because of an achilles problem as well as the PMR) - but if you go for a walk find a target. Personally I like a cafe/pub and a drink in the sun but they're a bit few and far between!, Start by slowly building up the pace and/or going a bit further each time. I have graduated to doing in half an hour what took me nearly an hour at first. And then I climb the stairs at the end to the 2nd floor! It was months before I did the stairs - I was terrified of getting stuck half way up between floors! I started by doing just a few and going back down to get the lift to the top

I would never have believed I would get to the stage I have now. 2 years ago I struggled to get to the village, about 300 yards. Now I can walk for a couple of hours, more if we walk to a restaurant and have lunch for an hour or two - and then walk back! You will get there.

[iforget]

You must not take the folic acid the same day as the MTX and they should have told you that...but other than that you can choose what works for you.

I definitely did not want to waste my weekend dealing with the MTX yuks and having something to distract me (like the working week) seemed like a good idea. With Mondays generally tending to be a busy day and since I found that I get a bit of MTX fog the day after I take it, I always had my MTX injections on Monday evenings. I would have dinner, a shower and then rest and sleep through the worst of the yuks. Tuesdays were cruise days (did as much or as little as I needed/could get away with) and I took "frolic" acid on Weds when I began to feel less yuk and more yay!

I started off at 2.5mg the first week and built up to 10mg over the next few weeks with blood tests monthly at first and then every six weeks thereafter and stayed there for a while to see if it would help before increasing any further....but I was not taking it as a pred sparer so that is probably a different regime.

Hope the MTX helps... usual restrictions...no live vaccines, stay away from people with infections and don't take the MTX if you have an active infection...and number one rule ALWAYS get your bloods done and make sure someone checks them.

[5lupins]

Hi griggser, ihave taken methtrexate for five years 20mg (not sure if it has helped GCA or not ) but do not feel ill after I have taken it. I was told very very definitely by rheumy nurse and pharmacist to ALWAYS take frolic acid the day BEFORE to prevent side effects. Once when I forgot frolic acid was told to move them both on a day. Please check as it may help you feel better. I never take any other meds with either of them either and always have a decent meal. Hope this may help. On reading this I have also put frolic. Maybe I will go and frolic a little on this beautiful morning in Yorkshire !!! It has been a while ----- take care.

[Griggser]

Thanks all for replies, as usual all helpful stuff. I think I'm still being hopeful that I will get over this horrible condition but get concerned when I hear some if you have suffered so long. Rheumy, doctor and pharmacist all stated to take the folic acid the day after the methotrexate so that is what I have gone with. I did ask the doc about taking the androlic acid on the same day as the folic acid and I'm sure he said it would be ok but you guys on here seem to be more informed. So yesterday was the methotrexate and prednisolone and today folic and androlic acid with daily prednisolone. Didn't sleep well at last night as stomach was a bit rough but let's see how we get on over the next few weeks. Hopefully the rest from work will help!

[iforget]

Griggser the rough stomach could be unrelated to the MTX - could be stress related at the very idea of MTX or could be something else altogether.. but some people do find MTX brings yuks. I found the yuks to be too much and so switched to MTX injections and that got rid of the major yukkies.

Hope this turns out to be the magic bullet for you and that it does what it needs to do

[honeyadams]

My rheumy and the literature say that mtx reduces the folic acid in your body, so must be supplemented, but never on the day you take the mtx. Cannot find anything that says folic acid is for reduciing side effects of mtx.

[PMRpro Ambassador in reply to honeyadams]

MTX depletes the folic acid in the body and that is the major cause of the mouth ulcers that many people develop with MTX. The folic acid is supposed to prevent them, some people need higher doses than others, for some it doesn't seem to work and some manage without it. It doesn't make all the side effects better though.

[Griggser]

Thanks PMRpro all useful information. I have had stomach pains, particularly at night since starting on MTX.