Can anyone tell me what it's like being on Methotrexate and if they regret going on it in the first place? I've just been diagnosed.

[stayingpositive]

[nomoreheels]

Firstly, your're username is a good one & hope you are able to keep that way! Secondly, welcome to this great site but sorry you have RA to find yourself here. We're a supportive friendly lot & hope you get lots of help being newly diagnosed. It's difficult coming to terms with it in the early days with all the changes etc. but hopefully you'll get benefit being on here.

I've been on 15mg methotrexate weekly for just over 5 years, first tablets & then changing to injections & not regretted it as it works well with me. I changed from tablets (usually prescribed first) as I suffered with some of the normal side effects & my consultant gave me a good while to see how I coped with them & when I showed no great improvement I switched to injections. I also take 5mg folic acid a day each day except injection day which helps even more. The benefits in my view far outweigh a couple of off days after MTX day, not wanting much to each & some fatigue but nothing I can't cope with as long as I listen to my body & rest when I need to.

You will receive varied responses to your question as not everyone does well on it but it is still considered the best first stage treatment in the UK. Were you prescribed anything else to take? It can depend somewhat on your Rheumys way of attacking it or how aggressive or early your diagnosis but another DMARD or an NSAID maybe given. MTX alone isn't usually as effective in my experience.

Hope this helps & you do well on it.

[helixhelix]

It's fine! And I absolutely don't regret it as it has given me my life back. The only change is that I organise my life so I have a lie in the morning after I inject, and stay in bed an extra hour.

[stayingpositive in reply to helixhelix]

Hi helixhelix, thank you for taking the time to reply. I hope I can come to terms with this, it's such a shock and it came on so suddenly, I feel that life as I knew it has been taken away from me - did you ever feel the same?

[stayingpositive]

nomoreheels, thank you for your reply. I've yet to be formerly diagnosed but I know that I will be - my 6 month review appt is on Wednesday and I have been in constant pain for the last two weeks since I had what I think must be a 'flare'! The mornings are awful. I know that I will have to have some form of medication and I've already been told by the consultant that they treat it with Methotrexate but I've got to admit that I'm scared of taking such a drug for the rest of my life. My feelings are that it will solve one problem but create another due to the long term affect it must have on your body. At the end of the day I suppose I have no alternative as I don't want to be limited in what I can do - (so much to do, places to go etc.) I'm so glad I've found someone to 'talk' to - thank you.

[nomoreheels in reply to stayingpositive]

No probs. If you need any more help or anything after or even before your consultation just pop on here. There's always someone on who'll help.

Be assured that if your Rheumy offers to start you on MTX you will have tests to see if you're suitable for it such as blood test, chest xrays etc. & if all's ok you will be well monitored once on it, usually early days fortnightly blood tests are taken to check you're responding well & you have no adverse effects on your blood or liver. This, as in my case, changes to monthly once it's found you're stable on it. Not everyone stays on it for life, though some do. It all depends on your body, basically & how you react on it.

Hope all goes well on Wednesday & let us know how you get on.

[Hidden]

I take MTX for a different condition and recently started to have bad side effects. I felt as though I was going to pass out and it was so frightening, that I didn't dare go anywhere when I knew I was going to take it.

My Consultant [Dermatologist] told me to try taking my Folic Acid at the same time as the MTX. Great! No problems at all using that method. I am only on 10mg/week at the moment because if I take anymore, my blood goes to pot!

[Hidden]

My pet theory about why Mtx seems to get a bad press is that it's so often the first drug people with RA etc. take and therefore the first strong drug many of us have ever taken in our lives. Therefore there's understandable apprehension and sometimes, possibly, the symptoms of the disease get blamed on the drug. I think many of us are a little more blase about drugs we subsequently take. I know Mtx does not suit everyone, but I found it okay, more than okay - virtually no side effects and it made me feel considerably better - it just takes a long time to 'kick in'. Ultimately it didn't quite get my disease under control but I certainly don't regret it. Good luck stayingpositive!

[Barrister]

When I was diagnosed last year I was so scared of taking MTX that I put it off until March this year. I started very slowly and apart from some woozy ness and diarrhoea I have been ok. I had a very bad attack of stomach problems and thought it was caused by MTX and stopped it until I saw the rheumatologist. In that three weeks my joints got worse again. My rheumatologist said it was unlikely to have been MTX and I have restarted it. Now up to 10 mg and about to take 12.5 tonight. So far it's alright apart from some hairloss which could be down to recently diagnosed underactive thyroid. Also going to have bloodtests for vitamin D deficiency. So all in all, don't be scared of MTX it could well make a world of difference. Clemmie

[cris1728]

have been on Mthx for a year now and understand your apprehension I felt the same before I started but am now a lot better take 20mg orally weekly. When I started had some nausea and felt very off it the following day found that if I took it lter in the day felt better. Had some hair thinning early on but that's now resolved. Also had an upset stomach when missed a couple of days of folic acid.

Good luck and hope all goes well on Wednesday

cris

[BoneyC]

I took MTX for over 30 years, stopped for 3 years (neutropenia) & recently restarted it. It's been the best drug I've ever taken in my 43 year RD history. No regrets whatsoever. Good luck with yours!

[sparker]

Hi and welcome! I was diagnosed 5 years ago and have had a different experience than most of the other comments. I had terrible problems with Methatrixate and had to stop taking it, looking back I don't think I was fully mentally prepared for this disease and honestly believe that it is vital that you take time to come to terms with this before considering your medication options, and of course Methatrixate is just one. I say consider your options because I feel that you are in control (hard to believe at the moment) you will be able,to deal,with this! I am medication free and have been for a while now I have never felt better or been in better shape. The most important thing for me was to do what is right for me by ensuring that I was mentally and physically in the best place possible! I wish you well for the future. x

[tigerlover]

Hi stayingpositive - I am on 25mg injectable methotrexate along with 400mg hydroxychloroquine and 10mg folic acid. I was petrified before taking the first tablet of mtx - i stood there almost crying - as has been mentioned this is probably because it's the first major drug I have ever taken. Up until 3 months before I was diagnosed I took the odd paracetamol for a headache, no regular medication for anything. It is scary and don't beat yourself up for feeling anxious etc. Now I inject the mtx and take two hydro a week etc and although I don't feel 'happy' about it, I now can function fairly well and am finally 'managed'. Yes it could/will have side effects in the long term, but from what I understand if you don't have some form of medication now it is like taking the express train to joint damage. Good luck.

[JaneAllen]

Coming down with RA was a great shock. I went to three specialists to confirm the diagnosis and the medication. All were for starting on MTX. Half the problem was reading all the scary articles about MTX. Well, I was on MTX for 6 years at 12.5 with 1 MG of folic acid. I added Remicaide after 3 years. Stopped for 6 mos because I had no problems. But just restarted MTX because of a bad flair. I'm less emotional and am taking the shots in stride. My stomach is a little "sore" for a few days after the shot, 15 mg with 2 MG of folic acid. Could be just need more time to adapt or a slight adjustment of the dose. Hang in there. MTX really did help me. It takes a few months for real progress.

[Littlefruitbat]

I have been on and off Methotrexate for several years and I found it gave me quite an upset tummy so I now take it on a Sunday morning so I have time to get over this difficult side effect. As time has gone on I find that it affects me less so that I can now manage the side effects without any major disruptions.

[HevJ]

Hi. I started on it 4 weeks ago (15mg weekly as well as daily hydroxychloroquine). I was actually diagnosed end of 2013, but due to my feelings about the drugs refused to take it. I went away researching it and every other thing about RA. I have drastically changed my diet too. Then mid March I had a flare up. After night after night of pain that wouldn't let me sleep I called the rheumy nurse in tears. I had an appt within the week started on the meds. I am still not happy, as I do worry about the long term affects and how after being on it for years some people then have bad side affects.

I am still sceptical but if it means I can live a near normal life relitively pain free with functioning joints I will continue to take it....

I hope you can come to terms with it in you own way too.

Heather

[Mall]

Hi staying positive,

Methotrexate gets a lot of very bad reports due to serious side effects for the minority. However the majority of folk with RA who are on this drug do benefit considerably. I have been on 25mgs weekly for over 10 years. This drug changed my life, enabled me to continue working and continue to pursue activities I loved. My fear is if I can no longer take this drug and go back to the level of pain and disability I had previously. I do not wish to minimise that it is a seriously heavy drug on your body and that when on it you do need to have your blood regularly tested so that possible liver and kidney problems can be identified before they cause harm. Best wishes and hopefully it will work for you as well as it has worked for me. Mall

[Beautifulmovement]

Hi Stayingpositive

I was diagnosed with RA last week and have been told to take MTX. I am feeling the same as you. It's such a shock to know you may have to take tablets for the rest of your life, and quite a harsh one at that. In a way it's so comforting to find others that are in the same boat as you via this forum. You don't realise how many people RA affects until you find yourself in the same situation. Everyone on here seems so lovely and supportive too.

I have yet to start MTX, but I've already decided to consult a nutritionist so that my body is in tip-top condition to withstand anything I have to take.

Good luck on your journey, you are definitely not alone!

Sab

[Sunflowerlady]

Hi All Thanks for all the comments you've put on this thread I now know my feeling are common been on MTX since November was told last Monday need to increase to 15mg and scared again and declined but got rheumy to put in letter to GP that my dose can be increased to 15mg so I don't have to try to see rheumy again

liz

[gingeq]

Hi, I took it for a year, and it did help my RA , I had some stomach upset the day and day after ! Taking later in the day did help though! Also the folic acid . I had to stop about a couple months ago because I started having liver problems and got a virus .. So for now I'm off and waiting for that to all clear up! Then I'm guessing I'll be trying something new!! I'm worried that my pain will get bad again before I can start something new!!

I felt the same way as you did about starting it, but glad I did , it gave me my life back !

Good luck!!!

[Hidden]

I hate the drug personally I feel crap on it,sickness,headache,migrane,hair thining and generally feeling unwell.its ok the hospital saying yo should get used to the side affects but I personally don't.i hate the drug and the rest I have to take to keep going .dpending the severity of the RA good look with the name you choice lol cause it's so hard to do with this disease :)) x

[nomoreheels in reply to Hidden]

Have you not been offered the chance of injections HBJ or is this as problematic if you are? I'm generally lots better taking it this way. Or maybe your folic acid could be upped? It's enough dealing with RD without feeling so rough on meds. Unfortunately though as I have learnt the hard way the option of not taking them just isn't an option but know exactly what you mean.

[Fcrooks]

I started methotrexate in January 2014. I learned to do the injections myself and do it Wednesday evening vs the morning so I can sleep it off. When I first started I had mouth sores so my Ra doctor said to stop taking for 2 weeks and then added back at a lower dose which I have remained at the lower dose and am doing very well now. The Ra can make you tired so when that happens take a nap and don't feel quilty you need it to reset yourself. Daily exercise will help and I have just added aquafit which I would recommend as helps to keep your large muscles moving and it's FUN.

[Fcrooks]

Nomoreheels love your username. I were platforms that have a good arch and are cushioned. I love shoes and I am short so like the height and my RA doctor said platforms with good arch support are good. Prior to being diagnosed with Ra my feet were driving me crazy and I had a flare up and my arch dropped. I have since got custom orthotics for my running shoes and golf shoes and were a cushioned birkie shoe around the house. You need to look after your feet. I went through my shoes and have got rid of all my flip flops and any shoe that does not have good support.

[nomoreheels in reply to Fcrooks]

Thanks, sad to say but true & my biggest downfall is no more, shoe shopping for lovely shoes! I also have problems that really need addressing & will ask my Rheumy the best way forward when I see her on Friday. The ones I wear are platformy in respect that they have a 1cm sole & wedge for a small inclination when walking as the balls of my feet won't allow flats. So no Birkies for me any more sob. The make I wear also make mule slippers so fortunately still suitable for my needs. I have the odd pair of toe posts in the same make but are less comfy nowadays. In fact tried a pair I bought at the end of last summer for a do last Sunday but didn't even make it out of the house in them, so back in the box now grrrr!

So pleased for that you can still run, I couldn't before RD & certainly wouldn't be able to do now if I could before lol!!!

[Paul4Boats]

My RA started in January and I was diagnosed in March and started MX within the 3 month "theraputic window". Kneeling was agony at the start due to inflammation.....but recently Nurse could not detect inflammation in my knees even after a 2K walk the day before. Finally after 6 months this very week I have the confidence to kneel down on the carpet, and it just feels as normal as it did before (for a 54-year old) - quite a milestone. Had to take it easy as the thigh/hip muscles need to gain more strength. Its surprising how weak your muscles become due to lack of activity.

So for me MX is a life saver. I had a bit of nausea for a hour or two the next day; I take folic acid day before and day after. Recently no symptoms at all from the MX.

Biggest problem for me is I can only drink half a pint of beer a day, as both alcohol and MX damage the4 liver.

best wishes

Paul

[gingeq]

Quick question , what is RD?? I have RA !! Just wondering!!

[nomoreheels in reply to gingeq]

Same disease, different initials, that's all. Recently after discussing the consensus amongst some was we would prefer to call it RD (Rheumatoid Disease) instead of RA. The Arthritis tag tends to suggest something anyone can have unlike us who are specially picked (lol). No seriously, not all of us wish to be considered as arthritic which as many who don't know much of the disease assume it's just aches & pains that you have as we get older. The times I had "oh I have that, it's a pain getting older isn't it" or "my friend's next door neighbours dog has that" & since using RD I've been asked what it is & it opens up the conversation, if appropriate, to explain it's an autoimmune condition & expand if more questions are asked. It's worked really well with me & find people aren't dismissive when I'm given the opportunity to explain. I've even been thanked for explaining as "they had no idea"! It covers associated autoimmune diseases too, again also often misunderstood so works as an umbrella for all of us.

Try it, spread the word!!!

[gingeq in reply to nomoreheels]

Thanks for explaining that to me ! Now I know what everyone is talking about!! That is a great idea to call it RD ! I'll have to try useing that instead of RA!! I have been told , well a lot of people have arthritis !! But , their thinking of osteoarthritis ! I also have that, it doesn't compare to my RD!!!! I'm not saying that osteoarthritis isn't bad , just for me at this time my RD is way more crippling !

[nomoreheels in reply to gingeq]

No probs. Indeed. I also have both & although my RD is thankfully now controlled by the meds I take I find my experience of the pain of OA without appropriate meds is equally difficult to live with. In fact I saw my Rheumy yesterday & was shocked to learn the pain I have is due to OA & not RD as I had assumed. I would compare it to the pain of uncontrolled RD without the typical swelling. Hopefully increasing my etoricoxib will make a difference to that & the problems I've had relating to cervical spondylosis too.

I hope you are ok today.

[Hidden]

I feel like that was one of my first questions when I came on this site. The methotrexate pills made me sick. However, the injectable methotrexate was fine I think my body just got warmer. It's been les than a year I have been taking the injection. I have no regrets! I think that and the Enbrel has done the most good for me. I realize your post was about a month ago. So you are probably on it or another drug. Well..... That's my opinion for what it's worth.

Hope you are feeling better!