Scared to death!!

I've been sitting here staring at these 3 tiny methotrexate pills for hours trying to get my nerve up to take them.. I take diclofenac potassium 50mg 3 times a day and everything I have read said to not take methotrexate and diclofenac together.. I want so desperately to feel better but I'm afraid to stop taking the diclofenac... All the negative things I have read about methotrexate have me absolutely scared to death. Hair loss, foggy head, upset stomach, etc... Doc wants me eventually to take 8 pills a week. How am I gonna get to 8 if I can't even take 3?? I need some reassurance about NSAIDS and methotrexate also any positive feedback would be much appreciated!

39 Replies

  • Oh hun, you are preaching to the choir. I took my first dose of MTX yesterday at noon. I slept on and off all yesterday. I awoke this morning with a slight hangover and have been napping on and off all day. It is 30 hours since I took my first dose and I am feeling almost normal.

    I never got sick or had diarrhea.

    Pleace take folic acid the everyday

    I am here holding your hand along the way.

    Take care


  • Oh drink lots of water before and after you take your pills. I didn't and that is why I think I had a hangover feeling this morning.

  • I will definitely do that whenever I get my nerve up!! Thank you so much for the advice!!

  • I'm taking 1 mg of folic acid everyday. Doc didn't say anything about not taking it on MTX day... I'm just worried about taking it with my NSAID. Doc said he wanted me to take both but I haven't read good reviews on NSAIDS and MTX... I'm just worried... Probably overreacting as well.

  • I've heard so much on folic acid. I take 5 mg folic acid aday even on MTX day.

    Why not take your MTX and if you need your nsaid later then take it. Don't over think it.

  • I've been prescribed NSAIDs from diagnosis with 3 different DMARDs, MTX being my longest at 7 years (including COX-1 & COX-2). It's still forms a necessary med more for OA now than RD but I have annual cardiovascular checks as I'm currently taking etoricoxib (a COX-2 known to have possible cardio effect taken longer term). I always inject in the morning & take my NSAID with my evening meds, just something I've always done, except for when I took tablets, those I had a couple with each meal, so for 15mg 2 tablets with breakfast, lunch & dinner & my NSAID with my evening meal.

    Generally it's high doses of MTX where it's recommended NSAIDs aren't taken concurrently not at the low doses prescribed in Rheumatology. The drug monitoring blood tests will also flag up if there's any indication that liver or white blood cell count levels are abnormal for your particular normal levels.

    I was fortunate in one way because MTX was my second DMARD so I didn't have 'the fear'. I knew what it felt like to have a DMARD work so I was anxious to get to that place again, where I could move freely without being in pain or waddling like a duck. Try to focus on the positives. The sooner you start the quicker you'll have a chance of feeling more like your normal self, or at least feel less rubbish, it can take a while to build up so each day you don't take the tablets is another day lost. ;)

  • I worried myself sick since monday when I picked up my MTX. I finally swalled the pills on friday. Now that I'm feeling better I think to myself, it's no big deal :)

    I will be happy to be sleepy for 30 hours aweek if I can have 5 painfree days. I want my life back.

  • You're not kidding about wanting your life back! I'm just way over thinking this. I've had my script since Monday and had every intention on starting it tonight but I just can't do it... I've got to stay off of Web MD!!! It has me all freaked out... I think I'm gonna get up, drink 20 ounces of water, eat a big breakfast and take the stupid things..... I appreciate your feedback!!

  • Good luck and keep in touch. We will get through this!!

  • I am the same way with it i dont want to take it either. Scared to death but if you will i will.

  • I'm gonna eat a big breakfast and bite the bullet! We can do this!

  • Let's do it and hope for the best anything is better then how i feel now. Bottoms up

  • I took mine. Did you?

  • Yes i did here we on a new journey let's hope it's a better one.

  • I felt exactly the same when I started on methotrexate! Apart from mild stomach ache and a bit of nausea, nothing happened. These side effects improved over time and now it just seems to give me wind! I take Folic acid once a week the day after MXT.

    I've had a change of diagnosis to Psa and now take NSAIDs in quite high doses as well as the MXT . The doctor had told me not to originally, but the rheumy said I can. I have the usual blood test every month.

  • I have been taking MXT for ) months. Started with 6 tablets and progressed to 8 after 4 weeks.

    In response to diclifenec why don't you ask if you can have another kind of nsaid which is compatible with MXT.

    Apart from nausea which has led me to change to injections very recently I have not had any other side effect associated with MXT. You can have side effects with any drug you take therefore it's trial and error when you take them for the first time.

    You are starting on a low dose so hopefully that should help as its looks like they are increasing at a slower rate.

    Good luck hope MXT helps you and ask to change MXT to another type.

  • Also I take folic acid every day apart from the day I take MXT which I believe help with reducing side effects

  • It's nsaid to another type

  • This was my experience too and at one point I was on10 tablets. If you do get side effects the subcutaneous pens are an option. But many (most) people can take the relatively low doses for anti immune well. Don't confuse with the very high doses given for cancer treatment This was my experience too and at one point I was on10 tablets. If you do get side effects the subcutaneous pens are an option. But many (most) people can take the relatively low doses for anti immune well. Don't confuse with the very high doses given for cancer treatment

  • I think a lot of us have been where you are...staring at the yellow pills on the table and feeling scared. I think it's a pretty normal and sensible first reaction, I certainly had never been in the position before of taking something that could cause such weird side effects.

    But, six years later, I now look at MTX as my best friend. It's given me life back and I have no side effects so I am pleased to take my weekly dose as I know it's keeping me on my feet.

    For years and years I took several different NSAIDs alongside MTX, as I had no option if I wanted to function. I've not heard of any that are truly compatible with MTX, but it's a question of balancing positive and negative effects. I no longer need to use them regularly as am generally in remission. However, I am well monitored and have annual cardio vascular checks, plus take stomach protectors so the risks are minimal. Talk to your GP if you are concerned. Here in the UK diclofenac is the least used NSAID, and generally Naproxen is the first choice as has slightly lower risk profile.

  • If you are feeling that scared still after all this advice, put them in the bin and talk to a doctor or pharmaceutical type of person. No good stressing about things cos you'll make yourself ill.

  • I hope that putting them in the bin was just a figure of speech. MTX needs to be disposed of in the correct manner. All unwanted drugs need to be taken back to the chemist. Just saying not wanting it to come across in the wrong way and cause offence. xx

  • I remember being the same as you. I can still remember where I was when I had to take the dreaded pills. We were away on holiday in Norfolk, I had my pills all in a line with the MTX being the last ones to take. I took the torpedoes SLZ, took my large anti inflammatory tablet and then there was three tiny little pills left to take. I done so much research into MTX and I thought that I was ok with it, but oh dear when it came to actually taking them I was nearly in tears. I eventually took them and you know what, I had no side effects at all. Everytime I increased my dose I expected something to happen, but no, I was fine.

    When I went to get my first prescription they didn't want to give them to me because a warning came up on their computer that I shouldn't take them along with my anti inflammatory drug. I told them that the hospital knew what I was taking and they only agreed to let me have them because I was going away. I assured them that I would check with the hospital before I took them, I did and the nurse told me that it was alright to take them, her words were something along the lines that the benefit out weighed the risk.

    I hope by now you have been brave and took them. xx

  • I took MTX in the evening after my meal, then I could sleep most of the side effects away ( mainly drowsy ) I associate like most others I take folic acid every day apart from MTX day. I now take MTX by injection as pills just got flushed through my system due to bowel problems. Be brave and take the pills I am sure it will help your RA. You are on a low dose so see how you go, ther are lots of other drugs if you have too many side effects. Good luck and try to stay possitive. Xxxx

  • Dear Krelkins,

    After a few weeks taking the methotrexate, I did have diarrhea and vomiting and thinning of the hair. However, the diarrhea and vomiting were subsided after 2 days, of course I visited the doctor and had some medicine for that. The thinning of the hair was slow down after a few months. It was not serious hence I was okay with that. When I complaint to my doctor, she said that the benefits the methotrexate brought me would be very much bigger than all these little side effects hence I should continue the medication.

    I did and I am glad I did because I am now back to my normal life and I am in remission right now.

    NO folic acid on Methotrexate day please. Read below to understand better:

  • Thanks everyone!! I'll let you know how it goes. So glad to know I'm not the only one with trepidation!! I got this. 😉

  • Think we were all scared taking that first dose, x

  • Hello Dont worry - I take 20 mg injectable mtx so if you get to a higher tablet dose and it affects stomach then ask to inject, yes it can thin hair but hair does seem to regrow but may need a bit more conditioner as seems a bit drier!!! When i got to 17.5 mg the arthritis pain went down a lot, I also take Diclofenic too so doesnt seem to matter but unfortunately side effects are different for everyone thats why it takes time to get to right meds and doses for you personally you may even need a biologic added in like i did but once you have felt brave enough for mtx I dont think the biologic is such a big jump. Take care and dont worry

  • I could not take MTX because it affected my hair but it is rare, I now take Leflodamide which can do the same thing but hasn't. So my point is we are all different its trial and error and all the symptoms disappear when you stop taking it so is it really such a big problem. My RA hurt so bad I'd have eaten broken glass to get rid of the pain. Now its in remission and life is normal. I bought high heeled blue and silver shoes to celebrate !!

    In short stop thinking about side effects and take at night with plenty of water, and you might just be surprised how well the medications do work its just trial and error really.

  • I've taken MTX over 30 years and steroids and NSAID's 40 years. I'm fine, apart from RA. Hope that helps.

  • Hi it is ok , take the 3 pills they barely going to work, try to take the diclofenac

    At list 3 hours late, or use alive is a lighter NSAID , drink plenty of water that help a little to clean the kidney and the liver from the toxic effects of metrotexate

    And very important, take I am pretty sure the doctor prescribe you (folic acid )

    I had the same fear , I was prescribed

    4 pills a week I took only 3 to see if I had

    Any side effects , nothing happen

    So the second weel I took 4 and was still ok , I will not take more than 4, I don't care what the doctor want , I am on a biologic to , I take CIMZIA every 2 weeks

    Best wishes to you

  • And? Did you summon up the courage? And was it all ok?

  • I took them at 11am Sunday and felt fine. Then I took my diclofenac at 3 and an hour later didn't feel to swell.... Not sure if it's a good idea to take MTX with an NSAID but the doc told me he wanted me to continue taking it. I guess I'm gonna survive.... I'm feeling really flared up this morning. My elbows and wrist are absolutely killing me so I hope this MTX starts working soon. Thanks for checking up on me!!

  • Hi I'm new to the site but not RA unfortunately . Had it about 14 years now I have been avoiding or should I say been running scared from mtx for years and have now today da da !! just taken my first dose of 10 mg . They have sat in the kitchen cupboard for 2 months but after reading the comments on your post thought I'm not the only one and I should just bite the bullet and give it a try. Recently inflammation has started in my ankle joints for the first time and whilst I was walking or should I say hobbling my jack Russell on her walk this morning I thought the time has definitely come.

    Let's hope it works for us and we all see an improvement soon . Appreciate everybody's tips and support

  • Hi Lucy76

    This is a great site for support.

    Good luck with your MTX day. Drink lots of water too.

    All the best


  • Dear Lucy76,

    You should not delay any treatment because once the joints are damaged, they are irreversible. We should avoid the joints being damaged, then we can be back to normal in the future. I am glad you have started to try the methotrexate today after reading all these posts.

  • Hi I started taking methotrexate and folic acid 3 weeks ago and have felt fine apart from wanting to go to sleep any time I sit down. I was not warned about this is it common. Not only do I have R A but also fibrosis of the lungs . I still have lot of pain but got told methotrexate will not stop pain.

  • Sophie17

    I was told that once methotrexate "kicks in" in about 3 months, there will be less swelling and pain. Is this not true?

  • Hi. There are plenty of us who take methotrexate and it has changed our lives for the better. You will always read negative comments because the majority of people only post if they are not happy with a drug. I wish more people would post with positive reactions. I have taken mxt for 14 years and I was scared when I first took it too. I can only say that I literally got my life back with mxt but it didn't happen overnight. You will need to take it for a few weeks and gradually increase it until you are on the right dosage for you. You cannot cope with this disease without the correct drug. Methotrexate might be that drug for you, it might not but you must take it to find out. As for hair loss, it is not so much hair loss as just a thinning and in my case it didn't last long and no-one noticed. Try not to be scared and just take the plunge. If I could do it for you I would. Good luck x

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