Treatments

[xmariexinmanx]

I have just been diagnosed and I am really concerned about the treatments offered to me - particularly methotrexate. Please could anyone share their honest experiences? I would be very grateful, thanks.

[allanah]

Fantastic. You go ! Gold star treatment. So some people get nausea others dont. You can change if preffered to injections if needed. But lots if people take max and are controlled!! Good luck x

[xmariexinmanx in reply to allanah]

what about hair loss please?

[AgedCrone in reply to xmariexinmanx]

Some lose a bit of hair...some don’t....I think my hair thinned a bit at the beginning but it soon settled down......no permanent loss.

But as you will read on here every drug affects everybody differently you just have to try it.

[springcross in reply to xmariexinmanx]

My Rheumy gave me Folic Acid to take on the days I don't have Methotrexate (Injection), this is supposed to help with the side effects of Methotrexate.

[allanah in reply to xmariexinmanx]

Sorry I've been away for a girlie weekend!!! I list a little hair but not in clumps but within 5/6 weeks it stopped. It certainly wasnt enough to upset me. The doses of these drugs were given are not so high as say the use of some of these drugs for patients with cancer , so we get the benefits but we usually dont get too many of their severe effects. You are closely monitored by the staff so they will sort it out if any problems xxx good luck x

[AgedCrone]

Had 7 great years on Methotrexate......like most I was hesitant to start it, but I swallowed those little pills like Smarties and had no nasty side-effects!

You will only know if you try it

Good Luck...hope you are one of the lucky ones it suits.

[helixhelix]

Methotrexate is my best friend. It gave me my life back. Yes my hair thinned to start with, but then settled down and is now fine. And yes I had a bit of nausea to start with but it settled down and now I'm fine.

I've been on it approx 10 years now, and no I didn’t want to take it either and I was scared. But it’s been fine and I’m so glad I took the plunge.

[Hidden]

xmariexinmanx I started Sept/Oct and I have to say I am glad I am on it yes some teething issues but dont let it scare you as the damage to your joints and flares etc will only get worse if you dont do anything. I got nausea bad but I am still on it now moved to injections, Yes I still have fatigue but I am happier on less other meds with MTX, now I am on week 16 ish.

Keep talking to your rheumy team if and I do mean IF you get issues they will talk it out with you and help you through the rough patches. Keep a journal.

Still in flare and learning all the other stuff ie less work more rest reduce stress it takes a while to get your brain and body from fighting everything and being stubborn.

I am Work in progress but the people on here help you through the rough days and laugh on the good days too!

[Hidden]

Works for some folks and not others. The only way of knowing is to bite the bullet and try. Didn't work for me, but I'm not you.

Wishing you good things. 🤗

[Hidden]

I’ve been on methotrexate for 4 years very little problems little thinning of hair on one side soon settled down. You will be well monitored with regular blood tests. I want to participate in life not just exist so I will try any drug that will enable me to enjoy my life ... if you don’t try you will never know if it is the one for you. It may not be one drug does not fit all. It really is trial and error with this disease. Any questions people will be more than happy to help on here

Sorry you’ve had to join us..

[GranAmie]

MTX wasn't good for me, nor sulfasalazine but am now doing v well on Truxima. Learning to pace yourself and to manage the pain, stiffness etc is sooo important, too. xx

[lilyak]

Methotrexate is the gold standard treatment for mod/severe RA, and for good reason. It has gotten a very bad reputation, thanks to websites like RA WArrior and many forums.

It has proven to be far safer than first thought.

It is NOT chemotherapy in the doses used for RA.

The studies say 70% of people get benefit from Methotrexate.

Methotrexate is a "cornerstone" medication and is often paired with other DMARDs or biologics as it increases the effectiveness. IN some cases, you must take mtx concurrnetly, so it is important to try mtx, and do your best to tolerate it.

Most side effects are mild, most often some nausea. All side effects are completely reversable on stopping hte medication. Contrary to what you might read, it does NOT build iup in your system and cause problems in ten or twenty years.

Some people genuinely can't tolerate it.

Some people don't want methotrexate, thinking that biologics are more effective and safer. This is not true. Biologics have far greater side effects and risk.

As others have said, the only way to find out if it works for you is to try. At first I couldn't tolerate it, but over time I worked with it. Its a very effective medication for me.

Hair loss. I lost ALL my hair, not from methotrexate though. Methotrexate thinned my hair, and yes, its a unpleasant, it can affect your self esteem. BUT hair loss is NOTHING compared to what RA can do. The hair loss associated with mtx is not a good reason to not take the medication, compared to the damage that not taking can do. I'm sorry to say it so bluntly, but there is so much worry and concern about mtx. And hair loss is a very minor thing. I mean the hair loss, IF it happens, is generally very minor.

websites that demonise methotrexate have a lot to answer for.

Try it. You might feel an improvement in as little as four weeks, or it might take longer. You might have terrible side effects, much more likely is that you will have some mild nausea. If you expect to have side effects, you very likely will. Trust your doctor. Remember, even if it makes you feel dreadful, its out of your system in a week. And it might put your disease into remission, especially if you've been diagnosed early.

I hope you try it, and I wish you the best with it.

[Hidden in reply to lilyak]

Very good answer Lilyak. All I can add is that I found a low dose of Prednisolone helped me until the MTX started working (and how I needed it!). That's something else people worry greatly about taking, but if it makes you so much better than when not taking it, there isn't really a choice.

I'm doing really well on MTX at the moment, 11 months in. I don't take the Pred any more. Like most people I worried about both, but nobody forces you to continue if they don't suit you, so I would say to xmariexinmanx take the plunge, knowing there is an exit if needed.

[BoneyC]

I was one of the first to go on MTX for RA (dx. 1971 age 6) and been on it for 40 years with virtually no problems. Switched from oral to injectable but that was to give gut a rest. Tried Humira and Rituximab but they did nothing for me. MTX has been the best of what was on offer at the time.

[Elizabethhampson]

Methotrexate has helped me return to leading a normal life. Just come back from a month in Australia and it worked perfectly with just very slight hair loss. Go for it!

[Porcs]

Methotrexate works.If you find the right dose it removes pain

[stbernhard]

I am on MTX (injections) since 2009 and have no side effects that I are worse than the pain and damage done to my body if I didn't take it. Go for it, try it, you have nothing to loose!!!!!

Good luck, I hope it will work for you.

[andlerswooddav0]

Clearly, there is a mixed bunch of MTX responses but overall it is very positive. My only suggestion is to increase the dose VERY SLOWLY. First time around, I went at it and got up to the maximum dose quite quickly - too quickly, and I was really struggling. I was taken off it but a wise rheumo suggested a year later that I re-introduce it but do so really slowly. I started on 7.5mg (or was it 5mg?) and did three months on each dose before it was increased and I suffered nothing second time around. So if you don't find it easy it is worth asking to go back to a low dose and do it slowly. Hope it goes really well for you.

[nomoreheels]

Hiya xmariexinmanx, welcome. You've had good advice & experiences of MTX, there's little to add. I'm seropositive, diagnosed in 2008 & I've been taking MTX nearly 11 years, without it I wouldn't be doing nearly so well or have so little joint involvement.

Something I don't think has been mentioned is the folic acid you'll have also been prescribed. MTX is the one med that is prescribed for RD where we can take something to help with any side effects we may have. It's not given you'll have any, or if you do they may be tolerable, though if you do the folic acid can really help. It's a good idea to avoid drinking alcohol until you've had a few drug monitoring blood tests, just to see if it's affecting your liver at all as especially early on it can cause a rise, until your body gets used to it. Ask the advice of your Rheumy if it's a concern, he'll recommend units for you. Upping your water intake around MTX helps too. You specify hair thinning, this is something I had when I first started it, just a little more hair in my brush but it was helped by an increase in folic acid as well as the longer I stayed on it. MTX helps by working on cells to reduce the effect of rheumatoid but it can't determine the ones we need to retain & so it can reduce our folate level, which you need to keep the cells we do need to keep dividing and growing normally. This is why we supplement it. So, those 5mg little tablets can really help.

Bear in mind that most people who use forums are seeking or help, either because they're newly diagnosed like yourself or are struggling for whatever reason. Those doing well have no need to used them so you will read all sorts of things which may not even be applicable to you. That said, here we do try to have a balance between being helpful & supportive & from time having a bit of fun. So I hope you find it helps being here with us & that your concerns about MTX are unfounded. If you have any other questions though we'll do our best to help or if we can’t steer you towards where you will find answers. 😊

[Sockknitter]

If you need a drug to slow down or halt the progression of your RA, MTX is a good place to start. Give it and you the best chance of success. Take vitamin B6 six days a week and MTX on the 7th.

Your liver will run a marathon, so make sure it has enough energy by eating a carbohydrate rich meal the night before. Pasta or similar is good.

Make sure you keep well hydrated on MTX day. You will know you are getting enough water if you need to pee every hour or so.

Rest - sit down, lie down or otherwise become inactive.

Sending you a gentle hug.

[Pawz4me]

I was on methotrexate for a year, mostly on 15 mg. It didn't do much of anything for my RA, but neither did I have many side effects. Sometimes the morning after I took it my stomach would be just a little rumbly, but nothing major or life affecting at all. I lost a little more hair than normal, but again--nothing major. I think the perspective of newly diagnosed people is probably skewed because most of what one reads online are complaints and problems. People for whom a drug is working well, and/or who have no or minimal side effects, don't post that they're doing okay nearly as much as people who are having difficult side effects post.

[xmariexinmanx in reply to Pawz4me]

Thank you so much for this, and all for your responses, in particular could you please confirm if when you take MTX does the hair loss happen each time or does it settle after a few weeks of the tablets?

[Hidden in reply to xmariexinmanx]

My hair loss was just thinning on one side behind my ear. It started about 6months of starting the tablets . Took biotin vitamin I don’t know if sorted it out but my hair and nails a healthier for it. If I didn’t take methotrexate I wouldn’t be able to brush my hair

[Pawz4me in reply to xmariexinmanx]

For me it was steady. For as long as I was on methotrexate I lost just a little more hair than I did before I started taking it. It's hard to remember now, but I think I was on it for a month or two before the hair loss started, and when I stopped taking it it was a month or two before things went back to normal.

[allanah in reply to xmariexinmanx]

To be honest RA can cause very bad and severe problems so a couple if weeks with hair coming out a LITTLE bit in my case is nothing compared to joint or heart damage. It was very little and very temporary too x good luck

[Maggiemae58]

I have been on Methotrexate now for over 3 years. It took a good 6 months for it to start working. But it has changed my life. I use to have constant flare ups and was in excruciating pain. Now I have the occasional mild flare up but they are far and few between. I know there are potential risks but I have no choice. Give it a good try. I hope it works for you. 🤗