To increase Methotrexate or not advice please - NRAS

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To increase Methotrexate or not advice please

Redrooster profile image
11 Replies

Have little flares of various joint of my hands. They last 24-48 hours and since starting Mtx 15mg and hydroxychloraquine over15 months ago, are very mild and infrequent don't interfere with my driving as they used to. When saw consultant recently she suggested I increase dose of Mtx to 20mg weekly as she could see the swelling and redness. My pain scale was a possible 1.5-2. My ESR and Crp are always normal.

The thought of increasing Mtx took me aback. I've had pain of 8 in hands and shoulders so this little flare was incidental to me and knew the reason why It had occurred (work related stress).

Others on this site have seriously bad flares so mine to me was inconsequential, should I increase Mtx and risk potential side effects when at present none or go with an increase dose and completely annihilate the flares.

She was leaving decision to me.

Any rational for increasing dose or maintaining the status quo would be gratefully received.

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Redrooster
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11 Replies

I think you might not notice any increase in side effects from 20 mg of Mtx. It's always a case of 'suck it and see'.

Fingers don't seem that important when pain is minimal but loss of function in hands can be devastating. I guess it's easy to forget that the main point of DMARDs is to control the disease and prevent joint damage rather than to address pain as such.

I speak as someone who has only had one flare which lasted a long time, was pretty awful & resulted in a lot of rapid joint damage. Could be that short flares aren't so damaging, I just don't know and probably your rheumy can't be sure either, but in your position I'd probably err on the side of caution.

I was in the same situation as you describe a few years back - taking same mix of drugs at same doses also with just a couple of swollen knuckles, little pain etc. I did go for the increase in MTX as suggested because the rheumy explained I still had 30% active disease and my hands and eyes are my livelihood.

I moved up to 17.5 injectable MTX and became very sick and started having pins and needles. I ended up coming off everything when the neuropathy and nausea worsened - even after I came down to a lower dose and stopped Hydroxy. On reflection I feel I should probably have chosen to live with 30% active disease because I have mostly had much much higher disease activity scores and much pain ever since. I've just started Azathioprine now in the hope that I could get back to where I was two years ago at least. We are all different so I can only speak for myself of course and relate my experience as you requested. I'm very drug intolerant and have learned the hard way not to rock my body's boat when it's on a vaguely even keel.

PS so far I haven't sustained any damage to the joints in my hands despite having long periods off DMARDs - which isn't to say you won't of course - but it may help to know. I did get a bit of irreversible ulnar drift when I was newly on MTX and my hands and wrists were still very bad. Now my hands are least of my problems though.

All I can advise is they must think it will be a good idea. Personally I am unable to advise as I do not know your condition or how you react to the two DMARD that you are taking now. If you feel ok about it that might lead to -TNF Medications in the near future. As long as they keep an eye on you, carry on regardless

I cannot tolerate any of these medications sad to say

BOB

hatshepsut profile image
hatshepsut

This is very much up to you, but don't forget that the most important thing is to prevent joint damage. Perhaps you could ask if you could increase the dose to 17.5mg, rather than straight up to 20mg, and see if that's effective? That might have less chance of provoking side effects, and might be less worrisome for you. When my dose was increased to 20mg, I had no more problems than on 15mg. But we're all different!

Hope all goes well, whatever you do. M x

nomoreheels profile image
nomoreheels

I had a similar quandary though my Rheumy suggested an increase in MTX, adding another DMARD or another which I don't remember because I'd formed a plan & made my mind up after the first suggestion. This came about because she at last examined my feet & she agreed I had disease activity. As I have a history of abnormal LFT's going from 15mg to 20mg (which is what she wished to increase it to) it was considered prudent to increase it to 17.5mg, have fortnightly bloods for 6 weeks & then monthly until I see my Rheumy nurse to decide if it's necessary to increase it another 2.5mg to reach the 20mg she thinks is necessary.

So far so good. I did have some fluctuation in full blood count reducing & LFT increasing but both have now settled so will go on to monthly bloods from this week on until June.

As your Rheumy has left it with you to consider all you can do is weigh up the pro's & con's but in my instance increasing the dose incrementally has worked. True we're all different & react differently to drugs but maybe if your Rheumy would agree to you doing similar it's a way of proceeding without risking adverse effects. By that I mean if you were monitored more closely as I have been any problems could be addressed speedily.

helixhelix profile image
helixhelix

I've recently done a similar thing. I was on MTX, Hydroxy and Sulpha and doing well but just with odd niggly aches here and there, and puffy joints every now and then, but nothing that dramatic and stable blood results. Anyway, consultant suggested I up the MTX by 2.5mg to 20mg, and I was a bit reluctant. It took a while to get used to the drugs I am on, and I was worried that this could just be that step too far.

Well I did go for it in the end. And the thing that has surprised me is the difference it's made, as it's only now that the aches have gone away that I realise how unpleasant they were, and actually rather more that just niggles. It took about 5 or 6 weeks on the new dose until one morning I woke up and nothing hurt! And I could move more freely, and joints did what they are supposed to. I am getting a few side effects from increased dose, but I'm hoping that they will wear off as they've done in the past. If they don't then I'll think again about whether to stay on this dose. But so far, so good.

It's your choice, and do remember you can stop if you don't like it, but don't dismiss the idea without a fair bit of thought.

sallyeb profile image
sallyeb

I have the same problem. My disease is quite well controlled but it is the pain and puffiness in my hands that worries me. Obviously not as bad flares as other people on here but frustrating all the same. It was good to read how other people's rheummy's had dealt with it as mine just seems to think disease controlled. Maybe I'm not shouting enough I think next time I see him I will have to mention the problems I'm having and see what he thinks best to do.

Sally

cathie profile image
cathie

Inflammation in hands isn't good. As various people have suggested, it might be a good idea to try injectable mtx which can often be tolerated better than those yellow pills. A lot of people find it hard work but I had to come off in a while ago and then realised how much it was helping. If you can (with help from folic acid?) persevere, then do try!

Livingston profile image
Livingston

I did 15mg MTX no bother and tried on 2 separate occasions to up it to 20mg - once by going in one jump (turned out to be a VERY bad idea) and once by going in steps. It turned out that I can also take 17.5mg with no problems, but 20mg I just cannot tolerate. I suspect everyone has their own limit.

Injections do allow you to absorb a greater effective dose from the same number of mg per week and were recommended by my rheumatologist when I got stuck at 17.5mg orally. Unfortunately, I found the side effects absolutely horrendous - a crippling headache that lasted right through the week and nausea unrelieved by anti-emetics - I couldn't even manage 7.5mg per week by injection. Just goes to show we are all different!

As with most treatments, it's probably a case of suck it and see. Damage to hands is a scary prospect.

smokin profile image
smokin

IT WORKS, DON'T FIX IT! YOU CAN ALWAYS INCREASE THE DOSE AT A LATER TIME.

GOOD LUCK

Redrooster profile image
Redrooster

I left a reply last night but can't find it on here. Just thanking everyone for taking the time to respond to my query.

Some very interesting points have been raised which I hadn't thought of ( can't see the forest for the trees) and just shows how having others who have same experience can help. Amazing how this RD can affect everyone differently and how we each respond differently to medication. Once again thanks for advice.

Dee

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