Methotrexate and folic acid

Bones, joints and muscles
1

Here's a warning! I've been on MTX since early January and appear to have been coping well with it.

At the beginning of March, I began to notice that I was losing my sense of taste. It was a gradual sensation, together with my teeth becoming very sensitive, especially to cold drinks/rinsing with mouthwash etc. Bad headaches, but not GCA ones and having a worse than usual brain fog.

I mentioned it to my GP during a consultation about something else. He dismissed it as me probably having an underlying virus. By then, I was also feeling pretty unwell and very tired, but then I often do. I very rarely feel well, except when I'm on 35mg plus of pred.

Last week, I went for bloods at St George's and asked to speak to a nurse about the symptoms. She discussed with rheumy on duty and I was asked to come in to see rheumy the following morning. My own rheumy was not there.

My bloods showed a folic acid deficiency. I normally take 10mg the day before MTX and its now been increased to 5 x 5mg over 5 days. This was on Wednesday (today being Monday) and I began to feel better by Friday. But, I then took the MTX on Saturday and went into a big black hole. I've been almost unable to move, major headache, teeth and lack of taste again, sleeping through the Easter weekend, feeling weepy and down, which is so unusual for me. During all this time of having GCA, I've never got particularly depressed. Frustrated, yes, but not depressed. These are all symptoms of folic acid deficiency. Rather than wait until today to take 5mg of folic acid as I should have done, I started again yesterday, Sunday, but the Saturday MTX has obviously killed off what little store I had.

I'll see how it goes this week, whether the 5 days of folic acid will give me enough before Saturday's MTX. If not, I'll contact my rheumy to see whether the dose can be increased.

I'm feeling so miserable and upset and angry with the whole thing. Rant over!

But it's something to be aware of if you are starting the dreaded MTX journey.

2

Dear Susanne, I'm so,sorry to hear if your latest set back. I know you've experienced a really tuff time of it, going back to when your GP wouldn't sign you off work and your eventual retirement from work because of the dreaded GCA symtoms and complications. 

I do hope this latest setback is stabilised soon and you begin to feel better. God knows you've been through the mill! Regards, tina

3

My impression is it is very unusual for just one dose per week of folic acid to be enough - most people have to take it every day they don't take mtx. I'm sure you can - and should - take more folic acid.

I'm sending you a link in a pm which you might find interesting. Have they considered you might be one of the people who doesn't absorb pred well? Might you do better with injections I wonder?

I can empathise with the feeling of frustration - I've just been sent back up to 15mg pred after nearly 2 years at 5mg. After 12 years of PMR - I'm a trifle p-eed off...

Hope you feel better soon.

4

Eileen, not you too suffering from the slings and arrows of pmr's /gca's outrageous fortune. I know that you suffered a flare a few months back, did you have difficulties getting it back under control? Do look after yourself, you help us all when we need it, perhaps you need some time for yourself. Regards, tina

5

I'm fine at 15mg. Just not at any lower dose. I feel fine - and at least I don't have to fight doctors about the dose or what other stuff they want me to take. But it is frustrating! I was completely happy at 5mg...

6

Tina, Yes, it's been quite a journey!

Thank you for your concern and kind words. They help in that I at least feel I'm being heard by someone who knows what it's like.

S x

7

Thank you Eileen. I very much appreciate your wisdom and kind words.

I'll see how it goes this week, as I said, and if no better, I'll give the rheumy a call. I'll also mention pred injections.

I've read the article, thank you. I can obviously take much more than the 25mg folic acid if I need to. I never realised the possible side effects if it though!

8

That's the point though Susanne, since my diagnosis of pmr two and a bit years ago I've had a breeze of a recovery. That's why I do get a little upset when any of my 'patient friends' experience such a rotten time of it. I could so easily be you! But there by the grace of God. I count myself very very lucky. Kind regards, tina

9

:-)

10

I take 1 mg of folic acid every day except when I take mtx. I also notice some loss of taste and dry mouth but since I like spicy food that's okay. 

11

Eileen, this is tough.  One would hope and think PMR goes away after 2 yearsm, but it can appear again with a vengeance, and prednisone is the only rescue.  Good thing you have the knowledge, and you don't need to fight with doctors

12

Hi Susanne,

I have had PMR for over 2 years. Like most I started on 20 mg of Prednisone. During the first 4-5 months, I seemed to be getting regular flares and my rheumatologist recommended I start with a supplement of Methotrexate (MTX), and after taking MTX at the same time as prednisone, I had less flares and much less intensity of the flare that did occur. DMARDs such as methotrexate ‘dampen’ down the underlying disease process rather than simply treating symptoms.

My rheumatologist strongly required that I take a regular amount of folic acid (1 mg per day) but not on the day of the week that I take my MTX dose. She indicated that 1 mg of folic acid per day was adequate for a male – females may need slightly more.

MTX suppresses cells which are metabolically active. One of the ways it does this is to antagonize an enzyme involved in the metabolism of folic acid. The enzyme is essential for cells to go about their business, and methotrexate in effect stops them doing this. This is fine when you're hoping to control the action of cells involved in inflammation but an unwanted spin-off is that it affects other active cells such as in the immune system, the stomach, the hair and the ovaries. In fact the drug suppresses any tissue which is ‘active’, that is, has metabolically active cells in it. Now, because of its action on the enzyme involved in the metabolism of folic acid, giving relatively large doses of folic acid acts as an antidote to the drug. If you were to take the folic acid on the same day as the methotrexate it would undoubtedly reduce the effectiveness of the methotrexate. But giving the folic acid on the other days of the week avoids this reduction in effectiveness and also prevents some of the side-effects. Traditionally folic acid has been given on each of the six non-methotrexate days but there are some rheumatology departments now using folic acid only three times a week, or even only once a week. My rheumatologist still thinks that six days a week is the best.

It took almost 2 months before the MTX seemed to become active. I have been taking my ‘once-a-week’ 25mg weekly dose on Mondays and daily Folic Acid for almost 2 years and I have not had any apparent side effects other than the regular ‘fatigue’ that I think occurs with or without MTX. Alcohol significantly increases the risk for liver damage while taking methotrexate, so alcohol should be avoided while on this medication.

It is important to avoid caffeine (coffee, tea, some sodas) around the time you take methotrexate, as the methotrexate may not work as well.

My prednisone taper is actively being reduced and I’m currently at 4mg pred. I think that there is some significant benefit from using a DMARD. My rheumatologist has now recommended that I start a slow MTX reduction (to 20 mg per week) following success with my prednisone taper program.

All the best,

Dave

13

Oh Eileen, after so long. I feel frustrated for you. I hope you can have a smooth journey back to 5mg. All the best

14

Dave, thank you for taking the time to explain it in such detail. It's really helpful and I now understand much better how MTX works.

I've been unable to taper below 20mg pred and have had several flares during my GCA and have therefore had to increase to a minimum of 40mg each flare. This is the reason MTX was considered necessary. I'm now having so many pred side effects that it's important I get down to a much smaller dose.

I can see that you are taking a much smaller dose of folic acid even though your MTX dose is higher than mine. I'm currently on 15mg/week, although it may be increased at a later time.

I no longer drink alcohol. But I am a big tea drinker and will try to have a caffeine free day on my MTX day. Thanks for that piece of advice also.

I really want the MTX to work and am prepared to give it a proper go. So far, I have been tapering pred quite slowly. Rheumy wanted 5mg reduction/week until I get to 25mg and then a much slower taper after that as I will be reaching my "wall" then, but that was too quick for me, so I've been trying 2.5 every 10 days or so, apart from right now when I'm feeling completely rubbish. Currently on 27.5mg.

I'm inspired to hear how well you have managed the MTX and the taper. Thank you!

15

Mphooey, if you are noticing lack of taste, perhaps your folic acid levels are too low? It's worth having checked. I like spicy food too, but it just feels hot rather than any particular taste.

16

Susanne - I'm glad this was of some assistance.

It sounds like your rheumatologist is a bit too fast on the 'race' track.

I think you should talk with Eileen about a practical taper rate for your condition - I certainly would not exceed the 10% dose reduction rate on a maximum monthly increment basis but I'm not sure for GCA.

I am currently going VERY slowly at my 4 mg dose - certainly no quicker than 0.5 mg dose reduction over a 3 to 4 month period and a half mg increase for a monthly period if I feel any sign of a 'flare' occuring.

Hope all goes well for you.

Dave

17

I posted on here a month ago about starting Methotroxate. I was on it for a month. I took 1mg of Folic Acid every day. The day after I took my fourth dose last week I suffered stomach pain. Started in the upper stomach and moved around. After a couple days I called my rhumy and they immediately took me off of the Methotroxate. It can cause some abdominal issues. I ended up at the Gastroenterologists office as it would not get better. I was put on a proton pump inhibitor called Dexilant. After 3 days I finally have relief. The doctor diagnosed me with gastritis attributed to the Methotroxate. She had no other explanation even after all normal bloodwork from both doctors. I'm currently on 7.5mg and had PMR FOR 3 years.

18

Actually I think I had the lack of taste before all this, but I can't remember now...

19

Dave, the reason I'm on this quite fast taper is because I had a bad flare at the end of January when I was jumped up to 85mg preds due to eye pain. That was just for a couple of days, then down to 40, but the rheumy obviously thinks that you can taper fast in that situation (as they all seem to do). I did start on the dead slow taper before MTX, but I've had to fight them to get them to agree to my 2.5mg taper.

When I get to 25mg, rheumy has suggested 2.5mg every 3 weeks until I get to 10mg. - if I ever do! We'll see, I may well decide to taper slower by then. It also depends on how well the MTX is working.

Susanne

20

Pam, that sounds very painful. I haven't heard of Dexilant. Will look it up. Hope you are feeling better now.