Worried about using Methotrexate

[yos72]

Hi Can anyone help me with their experiences of Methotrexate? Being urged to take it as I cannot seem to reduce steroids below 15mg. I'm worried about the type of side effects with this medication.

[polkadotcom]

I took MTX for two years and it did help me reduce the Pred dose initially. However, while I was taking it I had a GCA flare and MTX is no help at all for GCA. Once I recovered from the flare, it became clear that it had simply stopped working for me, so I came off. As for the side effects, I may have been lucky as after the first couple of doses (when I was a bit nauseated) I had no discernible side effects, but after the flare I got horrendous mouth ulcers, which was another reason for stopping it.

Like everything else in this PMR/GCA game, this is so individual a reaction that really you won't know how it affects you until you try it.

[Gosingen]

Hi I can understand your concern about side effects. Unless you try it you won't know if you are going to have any. I did try MTX, but asked for the injections as I have a few stomach problems. For me sadly MTX didn't work, so I had to come off them. Ask your rheumy/gp for advice. From being on this forum and also knowing friends who have tried MTX it can be most helpful in reducing steroid intake.

Wish you all the best with your decision.

[tiny43]

I have been on methotrexate for over a year without any side effects. It has helped me reduce from 15mg pred to 6mg pred. I was nervous about taking it and asked our local pharmacist. He said the important thing was to have regular blood tests while on it, once a month in the early stage, then less as time goes on. I am in the south of Ireland and they give Folic acid with it to prevent side effects and it worked for me. I don't know the procedure in the UK.

[Doralouise77]

I have been ordered on it. I had three doses, then a break, and restarting this weekend. It is taken with folic acid to lessen the side effects. This is the part I find most confusing. From a support page online everyone takes a different dose of folic acid and on a different schedule ! The folic acid decreases the nausea and fatigue but if you take too much or too close to the MTX it just wipes out its benefit. I'm going to try to stick with it for a while, I have to get off the Prednisone. I have GCA and there are favourable reports of it used for this. Here is one, but not the latest. Just Google.

ncbi.nlm.nih.gov/pubmed?cmd...

Cheers

[Hayesider in reply to Doralouise77]

Hi Animi,

You need to be careful how you take folic acid. Usually, you should take it only 6 days a week, the 7th day being when you take your methotrexate. You should never take both on the same day.

Usually, along with methotrexate, you also take Omeprozole, which is described as a gastro-support drug (why ? because you are taking methotrexate) !

After a blood test blip from the usual 45.mmol, I was 1825mmol, and immediately taken off methotrexate, 'and folic acid'. Due to IBS, I stick take Omeprozole.

Worth exploring with your GP.

Hayesider

P.S. How are the stretches going ?

[Doralouise77 in reply to Hayesider]

Hi Hayesider

Yes, my rheumy has ordered 5 mg folic acid to be taken 24 hours after the MTX. A lot of people on the support page were taking it the same day, some 7 days a week,....it was totally all over the place. My specialist didn't want me taking more unless necessary because he said I wouldn't get as much benefit from the MTX.

Yes I've was on a PPI but am now on Ranitidine for my stomach.

The lab value you mentioned, what is it measuring please, I would think it's a liver test.

And as I'm so brain fogged, what stretches are you referring to? I apologize.

Cheers

[CloudGazer6 in reply to Doralouise77]

The advice about folic acid depends on the dosage. Normally if you're on 5mg folic acid it's a once a week dose the day after the methotrexate. If you've been prescribed 1mg folic acid tablets those are to be taken 6 days a week, and not on the methotrexate day.

[Doralouise77 in reply to CloudGazer6]

CloudGazer6,

Thank you, that's certainly what I had understood/was ordered/read. It's amazing the number of people who reported taking it the same day as MTX. One even said she swallowed both pills together.

I'm restarting my MTX tonight, hope all goes well.

Cheers

[CloudGazer6 in reply to Doralouise77]

I hope it goes well for you. If you have side effects speak to your doctor and/or specialist nurse. There are various adjustments that can be made such as splitting the dose or switching to injections, and your team will be the best people to advise you as they have the overall picture of your situation and medications.

[Doralouise77 in reply to CloudGazer6]

CloudGazer6,

I spoke with my rheumy a few days ago and we talked about changing to injections, what dose to restart on,,....I didn't get any nausea, just terribly fatigued but this has continued so I'm wondering if the MTX was to blame now.

Thank you for your input, very much appreciated.

Cheers

[yos72 in reply to Doralouise77]

Thanks for your help

[Hayesider]

Hi Yos72,

I was on methotrexate for my RA, but a sudden blip in my blood tests, where in stead of being in the 40-50region, I was 1825, and immediately taken off.

Ask them about using the usual second line drug 'Hydroxychloroquine', which is the Malaria drug, but also used for RA. I am on this at 200mg a day, and doesn't need 'Folic Acid' or 'Omeprozole'. My RA has been under control with this drug for 4 years now, and no problem.

Benefit: doesn't need support medication, has little if any side affects, (not noticed anything), and is much easier to take as a single tablet than multiples to reach required dose.

Good luck, Hayesider

[yos72 in reply to Hayesider]

Thanks for your help.I think I will ask about Hydroxychlorine as I've already had issues with drugs like Omeprozole.

[Hayesider]

Hi yos72,

Please let me know how you get on. This change to 2nd line medication could be useful to others, so if successful, we need to know to spread the word.

If on Methotrexate, you should start with 2 weekly blood tests for 'Dmards', your blood taking nurse will understand what that is, and yes, it is to check liver function. After 6 months, you can drop to monthly, again to check liver function.

Even though no longer on methotrexate, my RheumyCon says don't need monthly, am staying on them with GP support, rather be safe than miss a flag for something serious.

Surprised so many different interpretations on how to use folic acid. If it was me, I would play safe and try each option and see what works best for you. I personally think the hint from 'animi' about not getting much benefit is worth following! I.e. Don't take the same day as methotrexate, and like me, try taking on non-methotrexate days.

When taking methotrexate, which I took it on a Saturday, after a blood test on a Friday. With results back same day, that's how we found I needed to stop taking it. It is a dangerous drug, needs to be handled carefully, and the various casual ways that some have been told how to take is frightening.

My RheumyCon is Hon. Senior Lecturer in RA, so theoretically should know what he is talking about. He specifies Folic acid 6 days a week and not on Methotrexate day. I have followed that for six years on Methotrexate, and never had a problem.

I started taking Hydroxochloroquine to bring my RA flags and liver function under better control. Then found that as RA was stable, was/am able to control with just daily Hydroxochloroquine. No real side-effects, doesn't require support medication like Folic Acid or Omeprazole, which sounded good to me.

Together with your GP, you should be managing this, not left floating In mid air with no clues why/what for.

I am 63yrs old, work full time in Civil Service managing team of 8 miss-fits, so have had to learn a lot about all sorts of problems. I have an allotment 100ft long and 14ft wide, which I use to grow veg to a) sublime our diet with fresh food, and b) save money. With Fibro, RA, IBS and Sleep Apneoa, it takes some juggling, but I will not give in, even if like now, I crawl around on hands and knees just to do something, save our food supply, and get valuable sunshine,Vit D and fresh air.

There, sorry for such a long reply, by 20 words wouldn't have given you any useful answers, which is what you asked for.

Hayesider, caring for others in a similar state.

[yos72 in reply to Hayesider]

Thanks so much for your valuable advice.It helps so much in handling these decisions to have input from others.Message is make sure to manage my treatment, these are dangerous drugs and I agree they seem sometimes to be handled casually.However never let any of it stop us getting out and living life!

[Hayesider]

Hi yos72,

The following is from NICE's own website:

NICE = National Institute for Health and Care Excellence

Methotrexate prescribing and monitoring

cks.nice.org.uk/dmards#!sce...

NICE.org.uk/Dmards/methotrexate

Methotrexate monitoring requirements

What monitoring is required for methotrexate?

* Prescribing of methotrexate will usually be part of a shared-care protocol. Follow the recommendations of local guidelines where they differ from those given below. Whilst absolute values are useful indicators, trends are equally important, and any rapid fall or consistent downward trend in any parameter warrants extra vigilance.

* Methotrexate is usually prescribed as a once a week treatment. Folic acid is routinely co-prescribed with methotrexate in order to reduce adverse effects and toxicity (folic acid is usually taken on a 'non-methotrexate' day).

Table 1 . Primary care monitoring requirements for people on methotrexate.

Laboratory monitoring:

Frequency.

Full Blood Count (FBC)

Fortnightly until 6 weeks after last dose increase; provided it is stable, monthly thereafter until the dose and disease is stable for 1 year. Thereafter, monitoring may be reduced in frequency, based on clinical judgement, and following discussion with specialist team, to every 2-3 months

It's frightening to see how many GPs/consultants don't know about the NICE guidelines, and the subsequent damage their patient suffers.

Hayesider

[yos72]

Thanks Haysider that's useful to have. I can make sure I get all the necessary checks.