MTX problems

Hi all, haven't been on for a while but always keep up to date reading posts. I have been on Methotrexate (8tabs), for nearly a year now. The pain in my hands and feet are worse rather than better. I have developed an acne rash on my face which I presume is from the MTX. I do not feel well at all on it, totally exhausted. I also have CKD just to complicate things. Sure there are others worse out there. I go to see the Rheumatoid consultant tomorrow. I will be asking lots of things tomorrow. I need to know more and am stumped as to what to ask? Any ideas of questions which will help me? Still feel a newbie as diagnosed last year with RA. I have this reticence not to question the doc about changing me on to something that will agree with me? Sorry I am ranting a bit.

37 Replies

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  • Never apologize for ranting. I beleve we should always be compliant to our doctors durring the 1st year of this dreaded disease....but you have given mtx a year of your life and you aren't in remission yet. So now is the time to take charge of your disease. You need to tell your doctor that your symptoms have gotten worse. Take a friend with you to your next appointment. A second voice and a second set of ears are always the best.

    If your rheumy doesn't listen to you, then it's time to get another rheumy. I'm on my 3rd rheumy and now I am happy with my meds.

  • Thank you suzannedale for your advice. Another good bit of advice I got on here is to ask to be copied in on the report back to my GP. I tend to battle on my own because I don't think the disease is understood out there. People don't want to hear your woes. I have a small list I.e. What level is my inflammation now compared to last year? Safe pain relief (although I don't think there is any safe ones).

  • Yes RA makes other uncomfortable.

    My 1st rheumy would give me a look and I used to feel bad that my RA wasn't improving. I always left his office upset that the pills weren't doing their job. Maybe if I took the pills after breaky instead of during breaky. Maybe if I started the pills on a thursday, not a friday....self blame was my game...it was my fault...

    Now my attitude is "what are you going to do to put me in remission?"

    I have a good rapport with my 3rd rheumy. He is known to say "One day at a time Sue"

  • I'm on patches just now I've had various ones in the past they do help with the pain ask your Dr if they would prescribe some for you all different strengths you can use them along with other drugs.

  • If you are still in pain after nearly a year on MTX, it sounds as if you need something added.

    Definitely ask your rheumy to review your medication. Have you had a blood test recently so that rheumy can see what's happening?

    Hope all goes well tomorrow.

  • Thank you aged crone, this will be my 3rd appt and only just coming to terms with the right things to ask. I had bloods done last week and doc called me to say kidneys are irritated! I am going to go back to GP to ask more about this.

  • I'm not a doctor, I sold beer for a living, but irratated kidneys don't sound like a healthy thing.Your kidneys are irritated? Ask him what that means. There are many meds available for you. Don't risk your kidneys.

    No one needs a phone call from their doctor like that without an explaination. I'm utterly disgusted that you were left hanging like that. You deserve better.

  • Thank you suzannedale.

  • I can't believe that in a years time this is only your third visit. When I was first diagnosed with RA I was prescribed MTX also but she wanted to see me in a month with my bloodwork done the week before so she could see the inflammatory markers and to see how I was doing with the mtx. I was on that for about 9 months and then I had a perforation of my lower intestine and could have been caused by mtx. So be careful and get another rheumy. I don't think you are getting the proper care with this one. I did see my rheumy monthly and then it went to 2 months

  • I thought this was normal mickeysmom!! I think it is because i am in "early stage RA". I perhaps had not said enough at my 2nd appt to warrant an earlier appt. Thanks for your advice.

  • Hi

    I agree with the others, you need a more proactive approach from you rheumy team to get things under control quickly for you. I think the main questions should be, what is the plan now and how long should you give each drug before you try something else.

    Regarding the rash on your face, I had a horrible rash on my face and asked my GP about it. He said it was some sort of fungal thing ( yuck)..... Due he said to lowered immunity. Gave me a steroid cream and some double base. It cleared up in a couple of days.

  • Thanks beaches2 appreciate your input.

  • I can't improve on what others have written re medication but might re skin problem. I had the same problem and at 53 it was no fun at all. (I know it was the Mtx because when I came off it for 3 weeks my skin completely cleared.) My GP gave me a cream called "Duac" which I apply nightly and it's completely solved the problem. Good luck with everything. Entero.

    PS Hang in there it will get easier when you get the right drugs.

  • When I see my Rheumy and GP I will hopefully get it sorted. Thanhs entero.

  • Hi,

    I had a similar thing with my last appointment, the clinic was running an hour and late. My 4.30 ended up being 6, so I guess he was in a hurry to get home.

    He asked how I was and I said awful, all joints seem tender and sore, really tired and don't feel like myself. In fact I'd been to the doctors to see if they could give something to ease the pain. One day I can't even lift the kettle! Rang the nurse at the clinic, she was busy and never returned my calls.

    He looked at me as if I was making it up and just increased my methotrexate and said he will see in 6 months.

    Felt so helpless and upset.

  • do not stay with a doctor who you are not happy with. Some of these doctors are not very good with people and sometimes they are not very good at all. Doctorshould put you at ease and appear to be interested in you. They need to listen and I don't believe you should be going 6 months before seeing him again with the issues you are having now. He should have scheduled you in a month just to see how you were doing. Do not stay with a doctor who doesn't appear to care one way or another.

  • Are you in UK mm? I found trying to get an appointment to see an NHS rheumatologist with any regularity impossible...same with GP's. Right now if I wanted to see a named GP it could take anything up to 4 weeks.

    Another thing I find incredibly irritating is that you are just sent an appointment date & time & if - shock horror - you already have another appointment you can't change, you go to the end if the queue again! I have just waited 5 months for a scan because despite giving the Appoinments office my holiday dates I was given an appointment slap bang in the middle .......I was then told I have to go back to my GP & get another referral!

    I gave up & had it done privately...but not everyone can manage to do that.

    Dealing with RA is difficult enough without fighting the system too!

  • AgedCrone. I am so sorry that you guys have to wait so long between appts. No I am not from UK but from USA. We have our problems here but getting appts with Drs and choosing our time and day is great. But then again we are also ruled by Big Pharma and the insurance companies, We pay for health insurance to help cover costs and they decide if they want to cover or not. I was prescribed the mtx pen because the tablets were not working for me and even with insurance it would cost me $100 a week. I can't afford that even on social security so it was back to the mtx pills along with 5mg prednisone. I'm sorry if I offended you but these meds for RA are not good for you and I feel that you have bloodwork to see if your liver, stomach or any other organs are being affected negatively. To that note I hope you all can get through your days pain free.

  • I was put on an inflammatory along witn Mtx and that helped a lot. Doc said daily but I take 2x week to protect my gut. Good luck

    Alice

  • my rheumatologist specifically told me to stay away from ibuprofen even though it really eases my pain. She said Tylenol only because of chance of stomach perforation. I currently have ileostomy done because of perforation of lower intestine I believe was caused by mtx. This is a horrible disease which is misunderstood by many and to treat you have to weigh what kind of bodily damage are you sacrificing. Be careful and check out drugs that doctors prescribe. Ultimately you have the last say so as for alternatives and you make choice.

  • Oh my gosh. I am so sorry for your situation. I hope that you can find some relief that is safe. Thank you for taking the time to give me advice.

    Take care,

    Alice

  • Were you not prescribed a PPI, stomach protector, when you were first prescribed your anti inflammatory Alice? Something like omeprazole or lansoprazole? Thing is if you're needing an anti inflammatory they work better taken regularly rather than taking them as you are just the odd couple of days a week. They not only work on your inflammation but also your pain.

    I'd mention what you're needing to do to your GP next time you see him/her, it's common practice, even recommended by NICE to prescribe the two together.

  • Thank You. I do take the Omeprazole but I guess I am just scared that it will tear my insides up every day. I was starting to get reflux. I'll definitely tell my Rheumatologist. I see her every 3 months. Thx!

    Alice

  • I get why you're bothered, particularly if you have stomach issues, that's why I was concerned maybe you weren' taking one but that's why you're prescribed the omeprazole, to protect your tum. Best to ask your Rheumy if you need to take them as directed, she'll know what would better for you, but you've to be happy with that of course!

    We're each different with different tolerances of course so we've to see how our body reacts. I've been prescribed daily NSAIDs from diagnosis 9 years ago, always with omeprazole but only recently it's changed to every other day & found I'm ok'ish.

  • You are so very right in thinking carefully what meds you take and finding out everything there is to know. Mtx interacts with a number of meds. Major interaction found with Omeprazole.

    drugs.com/drug-interactions...

    There are also nontoxic alternatives to protect your stomach with. Colostrum is shown to give good protection.

  • That info relates to high dose MTX only Simba not the low doses we're prescribed. I've found several studies, all relate to concomitant use of high dose MTX & PPI's. It's always advisable to check, in this case just click on the Professional option, next to Consumer directly above Interactions between your selected drugs.

  • Thank you nomoreheels. Yes it seems that all research that has been done is on high dose mtx use but the fact that PPI use as such also without mtx brings with it many adverse effects that everyone on these meds should be aware of before making her/his decision. Often being on mtx you are also on Nsaids and other meds that bring in a new players with their effects on the combination. Yes it is always a weighing of the risks and the benefits but in order for the patient to be a part of the weighing she/he needs all the available information. There have been so many on this forum comlaining about adverse effects, often irreversible that they had never been informed about beforehand. No one in my opinion benefits from an unrealistic downplaying of the risks. And if there are nontoxic treatments like Colostrum in this case, that may help, why in the world would you not try it?

    Latest on PPIs

    webmd.com/heartburn-gerd/ne...

  • Yes, it's important to be aware but I can tell you with confidence my life would have been very different without MTX & NSAIDS, plus omeprazole. You see the NSAIDs are one of only two med groups that help ease the pain & inflammation of my OA. Unlike RD only pain relief & NSAIDs plus lifestyle (diet & exercise ) are the treatment for OA. Also I'm prescribed a COX-2 which have a lower risk of causing stomach issues, even so I wouldn't dream of not taking the omeprazole. So maybe you'll understand why it's necessary to know the needs & weigh them up against the risks. I don't have any adverse effects so that goes to show you can't generalise. As yet I've not needed any joints replaced, maybe that's good fortune or maybe the meds work, I'd prefer to think it's the latter. I'm also of the mind that if there's a medical alternative that works I'd prefer to take that, it's the devil you know really, so colostrum isn't for me.

    The link you gave has too many possibles, coulds, mights & thinks to get convincing, nothing concrete. My DEXA scans show my fracture risk is low, that's after 9 years of omeprazole not one, so again that's not a concern for me. "Cooke has applied for NIH funding to do a larger, longer-term clinical trial to more decisively test his theory. In the meantime, he says, if the benefits of the drugs outweigh the risks for someone, they should keep taking their PPI under medical supervision." I don't have Barrett's Oesophagus, the leading reason for this article but I would be sure to see my GP promptly if I did have indications to suggest I do, believe me.

  • I think this is where the point is. Our minds and bodies all work in different ways to cope. You have found something that has worked well for you and the side effects have not made your life too difficult. There are I am sure, a number of RA med users that feel like you but then there is a number that don't, including those newly diagnosed, and they need to find their own way by learning and educating themselves with hopefully the help of a medical professional and forums like this. Once again my point is that you as a patient need especially help in ways of gaining control and understanding of your individual situation. You do not need belittling of the risks and effects of meds or the effect of diets and supplements or the promoting of a certain treatment regime as the only way to go.

    All the best to you😊 Simba

  • The point is I have no side effects, not as you say that side effects have not made my life too difficult, I have zilch, nada, none. It's another reason I wouldn't entertain other options & nobody would convince me otherwise unless there were valid reasons & then I'd change to an H2. Why change change something that works? You just don't.

    I think the point here is that I am a strong believer in science & medication, you on the other hand entertain or at least are happy to include a more natural approach. I'd prefer the derivatives to be made into tablets basically! Being informed is the foundation of understanding & as long as you are informed & risk aware then you can make decisions based on what you've learnt. 😉

  • Amazing😊 I am quite sure you belong to a minority just like those who have been able to reach remission with diatary modifications and supplements😊👍🏻

  • Ha! Maybe. 🤗

  • You can also protect your liver when on mtx with turmeric. The meds taken with RA is hard on our bodies and it can really make a difference when we learn how we can support our bodies to tolerate the meds. Take care.

    bmccomplementalternmed.biom...

  • I take Brufen retard 1600 mg every day with a stomach protector and have no problems. As you say Heels they need to be taken regularly to achieve maximum benefit.

  • Thanks for your response A-Faye. I saw Rheumy today and Sulphalasine is being added to MTX. They are trying this for 3 months then maybe something else if not reduced the inflammation.

  • Firstly, thank you to everyone for your advice and thoughts. I love this site for the information provided by you all that have already been through this.

    Well i saw the Rheumy this morning. Told him how bad things were on MTX and about the CKD call from my GP surgery. He agreed that the MTX is not reducing the inflammation, in fact it has increased since i was first diagnosed last year. My DAS score has increased by 4.48.He is going to try adding Sulphalasine to the MTX for 3 months, with weekly blood tests while that it being introduced. For some reason I had gone from daily Folic Acid to weekly. He said i must take daily. If the markers are still high with the added drug then we will be talking about weekly injections at our next meeting. Don't know yet what he is thinking about but i will give it a final go. At least he is listening to me now. Also asked him to copy me in on his report to GP. Then asked him to check my bloods for alleged "irritated kidneys", which terrified me. He said my kidney levels are better than they were a year ago!!!! He thinks the GP who called me (it was another from the same practice), has perhaps not looked at previous history and seen that i already suffer from level 3 CKD. I was so reassured by this!! He said he has no worries about my kidney function. Next i need to go to my own doctor to discuss this and also to get interim help with the rash on my face, which the Rheumy agreed probably is from the MTX.

    Whew, all I can say is that i feel more informed than last evening, and i will now attack my GP surgery to read my bloods properly!!

    More positive than ever that i will get this into remission. Thank you all again.

  • YaY!

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