Questions about Methotrexate.

[littleladymai]

I haven't had a definite diagnosis of RA yet but a specialist I saw recently is pretty certain that thats what I have. I've been refered back to rheumatology and just waiting for the appointment to come though.

I've read a lot about Methotrexate and just wanted to know more about it. From the points of view of people who are on it, or have taken it. I'd like to find out more about it just incase it's something I have to take in the future.

I'm a nurse, so of course I can find out all about the actual drug and how it works etc etc, but I want to know what it's like to be on the drug. I know it's an immune suppressant so I'm not sure it will even be an option for me seeing as though I work with poorly people on a daily basis but I'd like to know as much about it as possible if you guys wouldn't mind sharing your experience with me.

Thanks

[Hidden]

Hi - well I know there are other nurses on this site who take MTX - and teachers too who are surrounded by sniffly, germ-laden kids so that's shouldn't be a problem for sure.

I'm currently on 15mg sub cutaneous MTX (Metoject) and have been advised this morning to move up to 17.5mg which I've tentatively agreed to.

The things that worried me most about the idea of taking it prior to my diagnosis (8 months or so) were the idea of hairloss because I love my hair and have suffered from Alopecia twice in my life already. Also the long term health risks to my liver and the thought of taking a cytotoxic drug worried me and still do if I'm honest. But I had tried Sulphasalazine and had a bad reaction to it so MTX was the main option for me.

I think it's a brilliant drug in terms of it's effectiveness and you can read my blog to find out how much more effective it is when self injected as well. Because of it I'm rarely in any real pain now and it has given me my life back to a large degree because I was finding the very extreme flares in my wrists and elsewhere a real issue where it came to driving and uncertainty too. It would come on very suddenly and I would find I couldn't drive home or walk back up the hill to my home or navigate the stairs - apart from on my bum! Or even work as an artist because my fingers were playing fractured off and on. The last time I experienced this much pain was in June so I really do feel this is a seriously helpful drug and reccommend that if you are diagnosed and offered it then you do try it out.

I didn't expect to get serious nausea from it though - and this only happened when I went up to 17.5 mg of oral along with the Hydroxichloraquine I'd been put on. That's why I take it by injection now and why I'm sucking an antiemetic just at the prospect of moving back up to 17.5! Tilda x

[petalnumber2 in reply to Hidden]

Hi Tilda, I've read this thread of conversation about methotrexate with interest and learned a few things, not least that you are an artist too, like me.

I'm sorry to hear that you have problems with your fingers which upsets your flow sometimes.

My feet, ankles and knees are my main problem and though I do have some pain in my fingers and wrists, it is minimal so I consider myself very lucky so far.

I'd love to know what you enjoy painting. I know you put a few hours into folding and preparing something for a class of 10yr olds (I think you said) recently.

I started with watercolour landscapes, but over the years I have enjoyed using all mediums and different subjects. I do exhibit, but not as much as I used to and I've produced a few Christmas cards which I sold locally. I'm presently working on producing a calendar. All good wishes, June x

[Hidden in reply to petalnumber2]

Hi June. I hope this isn't disappointing to you but I'm not a traditional artist at all and no longer use paint much now because I discovered embroidery/ stitch after decades of painting and finding my eczema was becoming unbearable. Ironically the eczema cleared off but then the RA started and that was hard going for a while as it hurt too much to stitch or draw or paint - but stitching was the worst. I work with my husband and you can see what we do together by following this link; axisweb.org/seCVPG.aspx?ART...

Take care and hang in there with the MTX! Tilda x

[petalnumber2 in reply to Hidden]

Oh I'm not disapointed at all Tilda, It's quite usual for artistic people to have all sorts of interests. I've done my fair share of embroidery, knitting and sewing over the years too, and my OH used to get fed-up because I had so many things on the go at once.

On a different note, we have eczema, asthma and hay fever in our family and my brother has ulcerative colitis which is apparently connected RA. I had urticaria/angeodema before RA reared it's ugly head and the urticaria has gone away. Just goes to show how complicated our immune systems are. You take care too and I'm going to have a look at your website now. June x

P.S have a peep at jwartist.co.uk when you have a moment.

[Hidden in reply to petalnumber2]

Thanks June - looks like you have fun! Tilda x

[Hidden]

PS and I was very lucky that the hairloss wasn't an issue for me at all!

[littleladymai]

Wow thanks Tilda for sharing your experiences with me, it really sounds as though its made a huge difference to your life!! And it's good to hear that other nurses take the drug without any problems. The hair loss worries me a lot too! Do you know what the chances are that you will loose your hair while taking MTX? X

[Hidden]

I have been told that generally MTX is well tolerated and I think you should bear in mind that those on here probably are the ones who have the side effects most too so we aren't necessarily representative. Try and find out about Sulphasalazine, Hydroxichloraquine and Leflunomide too if you're doing your research. TTx

[Hidden]

It works well for most people with minimal side effects usually mild nausea ans some tiredness are typical but not every one gets them another issue hairloss I didn't notice any but I have thick hair.,, this side effect worries people most but it can be much less common than people think x.

It is motr rheums first or 2nd choice of drug to try,. sulphasalazine being another popular choice.It can give good results as Tilda has testified.

[k3let]

Hi, I injected 20mg for 5 years, then moved to enbrel and I'm now Humira with 10mg Metho added in again 4 months ago. I normally feel a bit tired and out of sorts after my metho day and it can trigger a migraine for me, but not every week, some weeks I get a better time of it. I take Folic acid every day except injection day and keep topped up with water which helps as does my anti sickness medication. I have quite fine hair and normally quite a lot of it. I noticed slowly after being on methotrexate for 5 years that my hair had got thinner and limper/ less full. As soon as I stopped it my hair bounced back to normal in about 6 months . My hair felt different to me but if you asked anyone with the exception of my hairdresser they would not have noticed. First time round Methotrextate changed my life, best I had ever felt for years. It caused the problems as noted above hence the consultant stopping it to give me a break. Back on it again, gradually increasing my dose until Feb when they may change all my meds due to the side effects. I'm glad I have given it a go both times and I hope it will really kick in and start working for me again soon. Worth a go in my opinion, injections best for me with lots of water, folic acid and anti sickness meds on stand by! Hope that helps. Only my own experience to type about, very aware we are all different and respond in different ways. You don't really know until you try it yourself, hope if you go down that route it works well for you x

[2plus2]

I'm a nurse who took it for three months, unfortunately I had a lot of hair loss and subsequently no hair growth for the time I was on it. It was stopped because of this. I think due to my job i'm a nurse in school, I'm quite resistant to most germs, I had the flu like virus over Christmas but only the same as all my colleagues and certainly no worse then them. Like you I had lots of questions and got so much help from everyone here. With all these drugs you just have to give them a go everyone is different and react differently to them. Good luck

[Hidden]

Hi

I'm on MTX and Hydroxy, have had no side effects from either drug, no hair loss at all.

I like Tilda, feel a whole lot better than before I was diagnosed, the MTX can take a few months to start working properly, so you have to give it time.

I still have a few painful joints and do find I get very tired.

All the best and I hope whatever drugs you are put on make a big difference for you.

Mary x

[Hidden]

Should also say that on this drug we are monitored regularly for white blood cells and liver and also offered the flu and pneumonia vaccinations as priority because of compromised immune systems. You might find Mads's recent question about our over active immune systems interesting too. TTx

[helixhelix]

I think for every person who has side effects with MTX there are loads of us who don't and find it a wonder drug. The first couple of months it made me feel a bit sick and headachy, but over time I got used to it and it was fine. Slightly thinner hair, but nothing that anyone really notices (and could just be age....). The plus sides have been much much better tho', as nearly back to normal. I've had the flu and pneumococcal jabs, but not had so much as a sniffle in years despite being sneezed over endlessly. I tend to think that the MTX takes our wildly over active immune system back to normal, rather than squashing it entirely. Some say you should avoid unpasteurised food and so on, but frankly I've never bothered. The only downside is not drinking alcohol - one or two every now and then, but that's it. Believe it will be fine, and don't worry as you are well monitored. Polly

[petalnumber2]

Hi littleladymai, Well you have plenty of feedback which I have read with interest and learned a few things myself. Like K3let, I have always had good thick hair, but after being on Methotrexate for 20 months my hair has become thin and lifeless. As a result I have it cut quite short and it doesn't look bad at all.

Methotrexate has worked wonders for me too, I still have a bit of pain and stiffness, but nothing like as bad as it was to begin with. I also had a few problems with nausea and tummy upsets which occurred 48 hours after taking it, but that has largely settled down. Like most people on this site, I'm not overly comfortable about taking this kind of drug, but the alternative of continued pain and deformaty is just unthinkable to my mind.

I am taking 20mgs and my Rheumy Dr wanted me to take another drug with it, so tried hydroxychloroquine, sulphasazine and laflumanide (one after the other) but unfortunately I had bad side affects with all three. So as you will see here in the answers, we are all different with different reactions.

I wish you good luck and hope you become comfortable with whatever medication you will be taking, and a big welcome to this site. June xx

[nottsexsportfanatic]

As others have said we all have different reactiins to ra medication. I am a college lecturer soam surrounded by lots of teenagers with cold or tumy bugs etc most of the time without picking up any of them (well, no more than prior to ra). I am on injectable mtx at 25 mg a week and so long as I keep up with daily folic acid and plenty of fluids I have very few side effects and my liver is starting to accept it in that blood results r also now improving. This medication for me is a godsend and side effects worth it compared to the horrific pain b4 medication.

Good luck with ur research and I hope u feel more in control when asked for ur decision.

Tina

[shirlthegirl]

Hiya, Welcome to this wonderful site, Well i am only on my 6th dose of Methorexate tomorrow, i take the tablet form, If i think of the way i was before, i can notice a lot of difference, i am on 15mg of Methorexate, 400mg per day of hydroxychloroquine and also i take 5mg of folic acid a week, 3 days after taking Methorexate, I am also at the moment taking pain killers but not as many,

i still get a lot of knee and wrist discomfort, and am still unable to return to work, But as everyone has told you, you need to give the meds time to work, The day i take the methorexate i do feel a bit weaker and suffer with nausea and dizziness, but it does pass by Monday morning, Also over the past 3 months i have also been given 120mg of Im Depo-Medrone, and i had my last one a week ago, So as you can see i am at the early stages of these meds, So i'm just hoping that things continue the way they are, Take care and remember everyone is different Xx

[tiger]

Hi, welcome to the site. I am a nurse, living in France and since we have lived here I have worked in elderly care so as you can imagine lots of patients with chest infections who don't think about covering their mouths when coughing!! I am on injectable MTX, have had an annual flu jab and also the pneumococcal vaccination - touch wood have had the odd cold but nothing to worry about. Hope you find the site a lot of support. Take care.

Wendy xx

[Victoria-NRAS Partner Moderator NRAS]

Hi

Just to address the issue of whether or not this would be an issue, as it's an immunosuppressive, whichever drug they give you, whether it's MTX or another DMARD is likely to be an immunosuppressive. This is because your immune system is poorly controlled due to the RA, so needs to be brought under control with these drugs. The effect that this has seems to vary, with some finding that they are picking up more bugs than usual and others saying that they noticed no difference at all.

Hope that helps

Victoria

(NRAS Helpline)