Methotraxate ......

[bevlin]

Just as a matter of interest, what dosage of Methotraxate are most of you on? I take it in tablet form 2.5 mg each tablet and the toxic nature of the drug worries me so I have cut my tablets down ( haven't told Rheumy doc yet but have an appointment early December!) to two per week. I feel much better in myself as was originally on six! Obviously I must be in a better position health wise as not in any pain or discomfort so will stick to two for now. Just very interested if anyone else has lowered their dose or stick to what's recommended?

[Ali_H]

Be careful Bevlin it's a very dangerous game you play because of the 'hidden' elements of RA activity particularly with regards to joint and bone degradation!

I am currently on 10mg per week and have always been since starting it on the 8th September this year. It has been held at that because my RA is low activity and I've had to have scans re other stuff cleared before considering any changes. I am half expecting my does to go up slightly when I see my rheumy next week as my RA is not yet in 'medically induced' remission.

The toxicity is a concern but when I think of all the 'crap' I've willingly exposed my system to in the past via food additives, the odd bit of booze, cleaning chemicals, secondhand smoking etc it pales in to insignificance but in order to 'off balance' some of the toxicity I've changed my diet to a more healthy - less toxic one. My cleaning fluids are now Eco friendly and legislation took care of the second hand smoke issue for me some time ago!

Take care

Ali

[Mark_67]

That's a very risky idea of reducing your own medication. You could have a massive flare-up, at any time, which could take weeks to clear. I'm on 20mg (8 tablets) and at the moment I am in a very good place. I was on 15mg but I suffered badly from fatigue during the spring/summer.

[nomoreheels]

If you have any problems of side effects from MTX you shouldn't just make the decision yourself to reduce your dose. Were you not given a contact number for your Rheumy nurse or told to see your GP if you experienced any problems or have you just decided you don't want to take it? I would have thought taking it for so long with few side effects it has been your saviour. I took tablets when I was first prescribed MTX, 6 (15mg) like you which is a pretty standard dose. I now inject 15mg & been on it 4 years next month & you'd have to give me a very good argument why I couldn't take it.

Has your situation changed & you no longer feel any benefit from it? It's just that it seems odd you've suddenly decided it has a toxic nature when it's served you so well for a long time. You have regular blood tests that must prove that it's not doing any harm, conversely you've said before it's allowed you to work full time & live normal life. True it has very different properties used in large doses but at the doses we take it's a very good med & has put many with arthritic conditions back on the right track. I would be interested to know why the sudden swerve.

I don't think your Rheumy will take kindly to what you've done but you do need his help as they're the ones who understand what possible preventable damage you risk doing self med'ing & can help you if consider options if you prefer not to be on MTX any more.

I hope that you come to see that MTX isn't toxic to anyone who gets relief from inflammation & pain. I had 3 months without my meds, including MTX & believe me I'd never want to be without them ever again. I even had to have my wedding ring cut off as my hands had swollen so much yet taking it they show no swelling at all, my RD is considered controlled & it's wonderful.

[emiliekofi]

Hi Bevlin I have been on MTX for 11 weeks now I started on 15mg 6 tabs but had suffered extreme headaches and fatigue but it did reduce my RA pain and my inflammation but my Rhumey nurse cut the dose to 4 tabs to see if it helped with the headaches. the day after taking the 4 I had some headache and so far I have not had one headache yaay!!!! I feel like I can get on with my life and I have no RA pain either so fingers x the reduction in my dose has helped. I would talk to your rhumey about it though as you don't want to be suffering wih flares. But if it's working for you at the moment that's a good thing.

[helixhelix]

I've changed doses over the years I've had RA as the disease activity has changed - but always in discussion with my rheumy and I never play around with the drugs by myself. Most people start around 10mg and go up & down to around 25mg, so I would question whether the 5mg you have decided to take is actually a therapeutic dose anyway, and might be too low to have any effect at all?

The other thing to bear in mind is that just as it takes a long time for the drug to have effect when you start taking it, it can also be quite a while until you feel the effect of dropping down doses.

My rheumy is very understanding of the fact that taking this amount of drugs can be difficult to "swallow", so in the past has been happy to support me in trying to drop down doses. And then when it hasn't worked (which it didn't) all it took was a phone call to be prescribed an increased dose again. Like Heels I would be wary of pissing off my rheumy by not following her advice without talking to her first, as I'm so dependant on having a good relationship with her.

If you don't like the idea of the drug then talk to your rheumy, as at the end of the day it is your choice.

[bevlin]

I am in a good place RA wise, no pain or swelling for about a year now BUT different problems seem to be occurring which appear to be due to the length of time I've been on this drug. My sleeping pattern is now dreadful, I have the most awful insomnia and can only get any sleep if I dose myself up with sleeping tablets! I had the skin cancer scare earlier this year ( MTX. Related) and have felt that my eyesight is getting worse by the month! Had an eye test last month as was told that due to taking MTX I need yearly eye tests......I was chatting to the optician and asked if RA was detrimental to your eyesight and he said not particularly but MTX can cause damage and you are prone to develop cataracts if taking it! My mum has been on MTX for about ten years longer than me and has awful cataracts and has had skin cancers removed from various parts of her body. I suppose it has come to a head when I was with a friend who is battling breast cancer and saw how Ill the chemo has made her, and that's what MTX is....a chemo drug. Dosent help that my eldest daughter is a nurse clinician for a terminal cancer charity.......sometimes too much knowledge isn't a good thing. I will discuss with my consultant next visit ( I don't have an RA nurse) but I just feel better for cutting down, will obviously go along with whatever they say at my next appointment but was just curious to see what was a 'normal' dose.

[nomoreheels in reply to bevlin]

I think your Rheumy is the one who could best determine if your insomnia is due to MTX but for it to be more than 2 years & you're otherwise well controlled it seems unlikely. As our Specialists are exactly that & we need to be guided by their choices & patient-specific protocol to best control us as we all present differently. It may be your problems sleeping are caused by the tablets you take for sleep, there can be a rebound effect & become, if taken regularly, the cause of the problem you're taking them for.

I am a bit confused as I understood you to report that your skin cancer was found to be caused by sun damage & if you weren't informed we should take extra care with the sun it's made clear in the patient info leaflet. I do hope that it hasn't since been found to be as a result of taking MTX but would think you've been even more careful in the sun since as you said you're sunbathing days are well & truly over, but after a scare like that I don't think I would be subathing either!

It really depends on your Rheumy as what dose is necessary for you according to the level of activity but if it was causing problems that would have shown in your drug monitoring bloods & another reason why you shouldn't change it yourself. I'm surprised it hasn't shown an increase in your inflammatory markers as a reduction of 10mg is significant even if you don't notice any change in inflammation your markers will be increased I would think. If you're having problems then report them to your Rheumy as you don't have Rheumy nurse in future, or your Rheumy's Secretary can pass any messages on to him if he doesn't have a Nurse Specialist.

As I understand it MTX is considered the least problematic DMARD as far as the eyes are concerned & think your optician's ill advised to give such information. If he thought you needed to be referred as a result of your test then he is duty bound to do so but he's in no position to be specific. Hydroxychloroquine is of more concern & why it's necessary to have regular eye tests, though they are few in comparison to the benefits it provides, did he explain that?! Regular eye checks are no bad thing with RD as the disease itself can cause inflammation, uveitis, & of course cataracts can occur naturally with aging. My friend is on the list for an op to remove hers & she's 53!

MTX is in a class of drugs called DMARDs when used in low doses for autoimmune diseases. When used in high doses it is classed as a chemotherapy drug so as different the conditions are so should the drug be considered different. It was first developed for cancer patients then was found to be effective for inflammatory conditions in much lower doses so is labeled as a disease modifying antirheumatic drug & after many trials it was licensed for that use. It's unfortunate many focus on it's original use & had it never been originally used as a chemo drug I'm sure fewer people would question it's safety. All meds are dangerous for those who don't need them or if they're abused but used responsibly at the correct doses specific to the disease they make life a whole lot easier, don't you think? Paracetamol is a widely used painkiller yet in large doses can kill, otherwise why place a limit on the quantity you can buy in one purchase?...... & that's an over the counter product!

I think the best thing you can do is list all your concerns of MTX & present them to your Rheumy at your next appointment. That way you'll get the correct information from the best placed person. The majority of our meds are specific to rheumatology & only a specialist in those meds can give you reliable advice. Remember, he's there to help not to harm so if you wish to change your med be forthright & say so.

[Hidden]

20ml injections with 20mg Leflunomide and 20mg Prednisolone (gradually reducing dose)

[Someonesmother]

I have started in MTX a few weeks ago at 10mg and will increase next week up to 15mg. I put it off for about 2 years as I was so terrified of the side effects, I had a son with cancer and saw what happened when he had chemo. Mind you this is a minuscule dose of only one chemo compared to what he had to have. So far it is only headaches, some funny ear problems and nausea, hoping that doesn't get worse when I up the dose. I a also terrified as I have liver and heart problems but I have tried leufenamide, not for me, and have been on hydroxy for 12 months to no avail. All the drugs are toxic, they all have side effects but in all seriousness I would rather give it a try to see if it helps. I understand that it is a crap way to live shoving toxic stuff down our necks but the alternative is even more gruesome when I look at some of the pictures of people who were never able to have treatment and how their bodies ended up and their quality of life is so terrible. I so don't want to be like that. Please talk to your rheumy, maybe call and see if you can get an earlier appt or see if he can call you back and have a chat, it can't hurt.

[bevlin]

I have an appointment soon so will discuss then. I have always been okay on MTX up to a year or so ago when I developed the sleeping problems which my consultant said can be a side effect of long term use of the drug and it seems that my body is now showing signs of the damage. My eyesight is deteriorating quite fast although I'm nearly 58 so to be fair age is possibly a factor! The skin cancer scare was a big wake up call too. But , as you say, every drug has it's side effects and I am pain free so I'll persevere!

[shazmill]

I took 4×2.5 on a Monday only