Is my mtx party over?

Hi everyone

Writing this at 4am which let's face it is never a good sign!

I would really appreciate your input about why my wonder drug methotrexate appears to have decided to give it up and go home. For about the last 4 weeks things have been subtly getting worse. At first I thought I was imagining things and then they put my dose up, but now there is no hiding from it.

I am back to a place I thought I had left - at least for more than 3 short months!! Swollen hands pain everywhere temperatures and not coping at work.

I simply cannot not work. Part On my way! Is not an option for me and psychologically I am just not able to think of myself as someone who can't work!!

Is it normal for something like this to happen? Is there anything they can do? Is it even worth me taking the damn methotrexate? At least I could

Be drunk and in pain if I wasn't!

The only way I am surviving at the moment is naproxen which I am rally. It supposed to take due to my inflammatory bowel disease but it's the only way I am even able to get out of bed.

I have a consultant appointment on the 21st. What shall I say??

42 Replies

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  • Methotrexate made me feel like crap for 9 months and did nothing to combat Lupus...the docs kept upping my dosage, and I felt worse and worse. I stopped taking it, with blessing of my PCP and rheumatologist and decided to treat the lupus with diet. My ANA has been negative for 18 months!. I was diagnosed with lupus almost 4 years ago.

  • Contact your rheumy now if the mtx is not working darling and tell them your job is at risk because of your suffering. Mtx doesn't always work for everyone.Hugs darling.xxxxx

  • I chased that sweet spot where MTX does the job but when I reached 25mg I discovered magic. I sat on that for years and even came off all drugs to check if anything I had was a side effect. That sorted I am back on 10 pills a week again and all is well.

  • So I shouldn't give up hope then??? Because I feel like doing just that right now ( she says tearfully and sleep deprived)

    Xxx

  • Heck NO do not give up hope EVER! It will pass. The immune system is so amazing and does eventually work around your meds until you find the combination that works best for your genetic profile. As more research is done on the immune system we are going to get better and better and identifying the appropriate individualized meds that work for your condition. Hang in there and if your flare does not abate in a day or so, call your rheumy for some intervention.

  • don't wait call your rheumy now MTX brilliant when it works but can leave us with all kinds of problems. I was taken off it 12 weeks ago with heart probs and bowel probs too. Thankfully they are calming down now and I will be trying another drug in four weeks. x

  • I started with MTX, and it worked brilliantly to start with. I was so happy! Then I started getting little niggles and aches, and the odd joint swelling up and so on. So the rheumy added in hydroxy and that combination worked wonders for quite a while. Same thing happened again a few months later and rheumy added in Sulpha. And that triple combination has worked fine for me for 6 years now.

    I know you've tried sulpha and that doesn't do it for you. But the point is that combinations of drugs can work miles better that each individually. So don't give up hope as may just need to give the MTX a boost with something else for it all to be fine again.

  • Thanks helix. I am guessing that maybe they will add in something else like they did with you. More potential scary side effects to learn to forget about!! Clearly nothing's gonna cheer me up today!

    Xxx

  • My husband took it for seven years, it made no difference to the pain or the swelling, he continued to take Naproxen trying every now and then to stop the Naproxen but couldn't as he also needed to work and function. its the side effects that have also got him, he came off methotrexate a year ago as he had a tooth abscess, he then started itching, causing open sores, dermatologists saw him and couldn't work out the cause but as soon as he started the methotrexate again the itching and sores went in a week. But earlier this year his memory problems, which was also picked up last year, got worse and he was told to come off methotrexate immediately as, although rare, there is a link between methotrexate and cognitive dysfunction. Methotrexate may work for some but our experience is that it has caused misery and long lasting side effects that are far worse than the RA he initially sought help for.

  • That is exactly what happened to me. But whilst it appears to not be working it is but just not enough any more. Are you injecting and what dose you on? I am on 22.5 by injection. This was when I was assessed for a biological drug. Now on biological but still take MTX as well as they work together. Your rheumy may suggest this but you must push for it as its very expensive and not offered freely. I once asked if I should stop MTX but was told I would be worse if I did. It is still working but needs more help... Bios. I still have the odd wine on methotrexate by the way.

  • I've had the same experience. It worked for me for several years and then I started having a flare and it didn't control it and eventually, because I really didn't want to go down this route, I've ended up on Biologics....which are working well!

  • And the good news is I've been able to reduce the dose of MTX.

  • hi bon sorry to hear that u in so much pain my methotrexate also stopped working after 8 yrs i am sure they will offer u something else there are lots of new bio medications out at the moment i went on to cimzia but it didnt agree with me but heard lots of other people got on well with it at the moment i am taking tramadol which is helping me hope u get sorted soon

  • When i reached max dose and methotrexate stopped working they put me on hydroxychloroquine which is the only thing i tolerate now but unfortunately it doesnt fully control my disease.

  • GET IN TOUCH WITH THE RHEUMATOLOGY NOW!

  • Hi, sorry to hear your not doing well at the moment. It could be a flare up and if so then possible steroid injection or tablets may help. Also as I'm sure your aware the drugs just slow the disease down and we're still susceptible to flare ups.

    Agree with comment though speak to nurses first and see if they can arrange an appointment.

  • If you have lost faith in drugs then it may be time to consider the whole-food plant-based dietary approach. There is no instant or perfect solution, but I am onto the next phase after introducing the diet, which is to rebuild my body from the ravages of RA through Yoga. The diet got me living with RA without drugs. I had hoped that was all that was necessary, but despite some heady heights the pain came back. Now with yoga I feel I am at last returning me to normal life. The particular yoga I do is Bikram, which is done in a very warm room, which in itself is a very enjoyable experience.

  • What diet Ru on

  • Interested to learn more about your dietary approach. Not sure I know what would be eliminated other than gluten and nightshades.

  • I have more info on my blog at foodandarthritis.blogspot.c...

  • Hi I've been on the 3 dmards since 2014 and it wasn't controlling the disease so 2 months ago I started a Bisomar Benepali alongside mtx and it's changed my life and I can do most things now I couldn't do before

  • My son is on 7 tablets of metho ..... the best thing he did was to split them up... and to

    take 3 folic acid during the week except on the day he takes metho.... it works for him and

    since he has been attending the gym he is now free from arthritis but still has psoriaisis

    Praying you all get cured...

  • Hi mariagomez, when you say your son split the MTX up what did he exactly do? Take half in the morning and half at night or take them on 2 different days?

  • My 23 year old son takes 4 metho in the morning and 3 at night with lots of water.Then 1 folic acid on Tuesdays and Wednesday and Third day. Never had nausia or any side effects. folic acid helps prevent hair loss and sore throats .Worth a try as Rheumy in UK suggests it.Hope it Will help you. God bless.

  • Thank you very much Mariagomez!

    I had nausea to begin with but that went once I got use to the tablets + increased the folic acid. I also recently got mouth ulcers - I am on 15mg - but I managed to bring a halt to that with rinsing with salt water a few times a day the first couple of days after taking the MTX.

    I still every now and then get the MTX headache the day after my meds so I think I will try splitting my MTX as your son does.

  • Hi Bon Methotrexate made me feel worse despite struggling with it for months. Talk to your consultant or phone if you cannot wait until the 21st. It does not work for everyone so they will need to review and adjust. I am now on a biologic and hydroxocholoquine which works for me but while waiting to find the right combination a lot of joint damage was done.

    Sorry to hear you are going through this. Good Luck

  • Guys thank you all so much. Can't tell you how much these replies help in the dark moments.

    Xxx

  • Bon1 ask your rheum nurse for a steroid injection to buy you a few weeks and keep you in work. i had steroids 7 times in my first year while chasing remission. i started like you on mtx, then added hydroxy and then recently added leflumomide. no remission yet and i am probably going to lose my lef as my bp is climbing and my lfts. all the weeks of waiting for drugs to work i would have been off sick if it wasnt for steroids. and ask your gp for different pain relief. i take cocodamol and only use my meloxicam nsaid rarely now. also ask for amitriptylline for night pain, its miraculous but i can only take it if i dont have work next day. im a nurse and work 11 hour shifts and i love my job. im desperate not to be off sick and let my patients and coĺleagues down so completely understand. past few days i have dreadful shoulder elbow and wrist pain so looks like i will need steroids soon myself x

  • I also take ariva and started out with 2 tabs made blood pressure go up...So now take one with prednisone. Not good taking all that prednisone. But we all have to suck it up and just keep moving don,t we?

    Hang in. Maybe they will find a cure someday..........

  • It took a bit of time for the methotrexate to work for me. My rheumatologist altered the additional drugs, and now for the last two years I'm pain free. It's well worth trying out further treatment.

    Patience, and good luck. XX

  • GET IN TOUCH WITH THE RHEUMATOLOGY NOW. IN DIMILAR SITUATIONS THE BEST ALTERNATIVE IS GIVEN BY MY TRUST WORTHY DR. TRUST IN YOUR DR IS VERY IMPORTANT.

  • Definitely get in touch with your rheumy. I was started on mtx, hydroxy and sulfasalazine. I reacted badly to the last two and now am on mtx only which isn't working at the moment. My rheumy says everyone is different and everyone is treated differently. It is a case of trial and error until a combination works for you and after a while it may not work so they look at it again. There is no set treatment as everyone is different so hopefully they will be proactive with you and try you on alternatives. I can't take naproxen and steroids have the reverse effect on me causing the flares to worsen as I have a rare reaction to them. I was prescribed amiltryptaline which works to make your pain killer more powerful and I have felt on this I have at least been able to get some sleep. Good luck x

  • HI I was fine for awhile on methotrexate and hydroxychloroquine but then I started to flare. Was lucky I had an appointment already with the rehmatologist and when I saw him he put me forward to have a biological drug. I had to wait a few weeks while it was all passed and they put me on Cimzia injections and kept me on methotrexate and hydroxychloroquine. The injection has done the job. Hopefully they will try you on a biological and that should make you feel a lot better. Good luck with your appointment and hope you feel better soon.

  • hi calph u are the first person i have heard that is on cimzia i was put on that about 6 weeks ago but i reacted bad just didnt agree with me my doctor advised me to come off it as i was getting visual disturbances i was very disapointed as i heard very good drug but we all different and react different not on anything at the moment just tramadol for pain rhumy not very pleased with me but that frightened me how long u been on it x

  • Hi Mary I was started on it in March this year and was nervous about it. It started to help me after a couple of months and now I am so much better. Hope they can find something to help your pain and make you feel as well as I do st the moment. Maybe they can try you on another biological drug that will not have side effects. Good luck

    Regards Carol

  • Sending you HUGE hugs ox

  • Hi Bon1, I'm glad your asking the right questions before your appt. Did you mean you've been in a flare for three months or have only been in mtx 3 months?

    I have been on mtx alone mostly for 16 yrs for Psa, until a neck fusion when I had to give it a break. My rheumy had to double it to six a week then added humira because my disease progressed when I discontinued. Please if they try other potent meds get a chest xray first so you know its safe. I had to stop everything because a lung lesion was found six months after starting Humira.

    My surgeon saw how bad off my now RA, Lupus, and psoriatic arthritis, and sojourns was and said it is more important for me to get back on methotrexate. I'm starting to feel better. My rheumy is adding ortezlia for skin but the methotrexate is doing its job again. I can't handle prednisone, maybe you can and that might put you back on track.

    Please call your Dr.

    I remember how hard it was to work, my heart goes out to all who have to work in this pain.

    Prayers and Hugs,

    Julie

  • Please call your doctor now, your job is at risk and you need medical support immediately.

    Prednisone can be a safe saver, short term until they find s drug or drugs that work.

    I have been through all the DMARDS and now on Enbrel, it worked good for about a year and is now failing. I just got approval to up my dosage to see if that works. However that also increased my risks for certain cancers, my Rheumy made sure I I understand this before accepting an increased biological,and I now take an biologic injection more than once a week. I'm told 4 months before I notice any change. If this doesn't work, it will be a medication change.

    We are all so different, and no drug or combination works for everyone. Please do not give up hope.

    There is a saying that really makes sense.

    "No matter how good or bad your life is, wake up each morning and be glad you have one"

    Some days you wanna kick that saying to the curb, but please don't give up hope.

  • *life saver

  • Hi Bon

    Never give up. I am on 10mg MTX for the past 12 years but it was stopped for a month as I had pneumonia.Then when I started MTX it did not have any effect.My joints were swollen as my disease was managed for so many years they stopped referring me to a Rheumy. I was seen by a nurse fr the past 5 years. But when I had a lot of pain and swelling after my illness MTX did not work . They increased the dose to 15mg and I had a steroid injection . Now I feel a lot better but there is erosion bones on my left foot which makes things to difficult for walking.Ths a permanent damage. I also try some turmeric , cider vinegar with honey . Ask your dr to refer you to a physio, hydrotherapy now and he should review your medicines. hemay suggesr an steroid injection too It takes a long time to get an appointment with a physio. I went through Hell but am walking a little better and the inflammation is probably controlled. I will go for a blood test soon.

    So please dont give up.

    Good luck

    Joya

  • I was diagnosed July 2015. It took five months for MTX to kick in then I had to drop it. I took three months off drugs but back on MTX again as of two weeks ago. One of the realities is these drugs may work for awhile but eventually will stop being effective. Our immune system adapts and finds a way to overcome the new drug, like a virus. It will mutate, amazing . But, just look at the outcome for patients prior to drugs like MTX or Biologics. Once the damage is done it cannot be undone. It may take time but they will find something that works for you. At least that is what I keep telling myself lol

    As regards to work, I have had to close my shop and sell my financial planning business. Working is simply not an option. I am hoping to find something productive that works with my new reality. There are many home based options available. I hope you have a good support system. There are other options if MTX is not working for you.

    Hang Tuff 🏋🏻

  • I took one dose and my liver function test went crazy. They took me off immediately . Are you having regular blood tests

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