Is Anyone Else Taking Methotrexate For Ra

[shayre]

I am supposed to start taking methotrexate for RA. I have emailed all of the manufacturers of name brand and generic version. Rheumatrex contains gluten, but i have not yet heard back about the others. What is everyone's experience with this drug? I really am terrified to take this drug, since it can have so many side effects. I am concerned about gut issues, because I am doubting that the ingredients can be free of gluten, dairy, corn and soy. I know that this drug can come in shot form, but still...scared. I am also wondering about biologics?

[ravenwoodglass]

I can't answer as to whether it was gluten free because it was one of the many drugs they gave me before I was diagnosed. How long have you been gluten free? If it is a short time you may find the diet itself gives you a lot of relief. I got very lucky and my RA symptoms were in remission within a few months. Not all are that fortunate though. I do flare when I get glutened and for me asprin gives more relief than any of the drugs they gave me by script.

[mushroom]

Hi Shayre. I was looking around through your posts and you haven't been around much lately. What has been going on with you?

I am particularly interested as one who has been treading the RA path for seven years, long before I was (self) diagnosed as gluten intolerant. Actually, I quit eating gluten to see if it would help my RA because I knew someone with ankylosing spondylitis who refused to eat gluten because of his disease. It didn't help the RA, but it did resolve all the IBS and fibromyalgia and "headcase" symptoms

At any rate, before my psoriasis showed up I was diagnosed as seronegative RA, but later, once the psoriasis blessed me the diagnosis was changed to psoriatic arthritis.

First line of treatment was methotrexate. I was in New Zealand by then and knew nothing of gluten intolerance, so have no idea whether the medication I was taking contained gluten or not. But I was still eating a gluten diet. And the methotrexate damned near killed me. It helped with the stiff joints, but that didn't really matter because I was so sick I could barely walk from my bed to my recliner where I spent my days. I had nosebleeds, mouth ulcers, and what I have now come to realize was pulmonitis. Could barely walk across the room because I couldn't catch my breath. Took me two hours to shower and get dressed in the morning, once I had limbered up for an hour or so. Living hell. But anyway, you asked, and this is just me. I know people who have done wonderfully on methotrexate - we are all individuals, and how do you find one without gluten?? well, your pharmacist needs to be you friend. I have made a friend out of my pharmacist and he checks everything for me. I know it can be hard with prescription drug plans to go to a smaller independent pharmacy and get this personalized service,.but it you can manage it this is the way to go. They know where they get their supplies from and who to contact. Of course, sometimes the answer still isn't clearcut. as to gluten. I am also intolerant of corn and soy, and it is such a hassle and you do have my sympathies.

Once I refused to take the methotrexate any more I cycled through sulphasalazine and diclofenac until I went into kidney failure from the diclofenac, then went to Plaquenil which stirred up a storm with my psoriasis for a couple of years, tried Leflunomide for about one day and then called it quits. There is no funding here for the TNF inhibitors (biologics) unless you are at death's door when they aren't going to do you a helluva lot of good anyway. But I got my rheumy here to recommend Humira for me, and when I came back stateside got it prescribed under my medicare . So now I bring it back through customs with me every year. Humira has literally saved my life - has given me back my life. I have been on it for almost three years and have had no side effects from it so far (touching wood here). My pain is gone, my psoriasis is under control (well, actually, I had a mix-up with my drug co. last year and ended up two months short of prescriptions, so thought since I started the Humira at about the same time I went gluten free, that I would go a couple of months medication-free to see if gluten free made any difference, and the answer is NO!! sadly. Everything started coming back full force. But I am happy to say that all my joints work, that I am pain free, and my only residual from those years is sausage toes and fingers (some)).

So anyway, they normally want you to give methotrexate a trial and I have known people who swear by it. But if it isn't right for you don't persist with it as long as I did. And if you can't guarantee it is gluten free ask for the shots. I give myself my Humira shots - don't know if they let you do that with Methotrexate. Sometimes they use it along with another med. like sulphasalazine.

Write some more here and let me know how you are doing and how else I can help you.

[chasbari]

They had me on Enbrel and Methotrexate for severe RA symptoms before I was DX'ed with celiac. I went on gluten-free diet at first with lots of breads and cookies and stuff and saw no real change. Went Paleo and within forty hours went from a morning gel time of 2 or more hours to being able to hit the ground running. I have to add that I took myself off the enbrel almost immediately as something didn't feel right (not a very scientific answer, I know) and had also stopped the methotrexate as, while it had made some improvement in my hands and feet, I was starting to have pretty severe hearing loss and dysphonia as well as liver numbers that were not looking good. It is potentially liver toxic from my understanding. Back to the paleo. Once I went totally grain dairy and soy free and took all nightshades out of my diet I was able to walk first thing in the morning. This all happened within 48 hours of starting paleo. I haven't looked back since. I have told the story before but here goes. My rheumatologist refused to belief I had celiac after my biopsies and said I probably had IBS. He wanted to start me on humira and was angry with me for refusing to take that as well as something for bone density. Told me I was being foolish and that my decision not to follow his advice was likely to kill me. He also refused to believe that my RA could possibly be secondary to my celiac. I have never felt better and am getting ready to go workout in just a few minutes. Not bad for a 50 year old former cripple.

[eatmeat4good]

Mushroom and Ravenwood- My God you have been to hell and back. I so admire all the writing you do for people here. You really are intelligent, informative, humorous and inspiring. I had some years myself of being unable to function enough to get to the shower and then the recliner. I'm so glad I found this site. You guys are so important, helpful and inspiring to those of us who have lost years to this diesease. I am in awe of you both. I didn't mean to hijack the thread but I had to say it. I wouldn't have my sanity yet if it weren't for what you two went through and write about now. I would never have believed that anyone could have walked in my shoes and survived to come out the other side. You are both a tremendous inspiration. I'm still healing, but thankfully the hellish days are over. You guys are a wealth of information and it is invaluable to those of us who are still healing.

I wanna thank the other old timers that write too. Just can't remember all the names right now, but really, there is no recovery for some of us without your wisdom and effort. So I thank you all very much for what you do here.

To the OP: My daughter has Lupus and RA. She has been on methotrexate for 5 years with no ill effects. She had to discontinue the med during pregnancy, but otherwise, she tolerates it just fine. I hope you are feeling better soon.

[ravenwoodglass]

Mushroom and Ravenwood- My God you have been to hell and back. I so admire all the writing you do for people here. You really are intelligent, informative, humorous and inspiring. I had some years myself of being unable to function enough to get to the shower and then the recliner. I'm so glad I found this site. You guys are so important, helpful and inspiring to those of us who have lost years to this diesease. I am in awe of you both. I didn't mean to hijack the thread but I had to say it. I wouldn't have my sanity yet if it weren't for what you two went through and write about now. I would never have believed that anyone could have walked in my shoes and survived to come out the other side. You are both a tremendous inspiration. I'm still healing, but thankfully the hellish days are over. You guys are a wealth of information and it is invaluable to those of us who are still healing.

Thank you. I firmly believe that there is a reason for everything. If the length of time and all the suffering myself and others have gone through can help others from going down the same path then it has a value and a purpose. It also helps keep one from getting bitter over all those 'lost' years. It's great to hear the worst of the hell days are over for you and I hope you continue to improve.

[mushroom]

Thank you. I firmly believe that there is a reason for everything. If the length of time and all the suffering myself and others have gone through can help others from going down the same path then it has a value and a purpose. It also helps keep one from getting bitter over all those 'lost' years. It's great to hear the worst of the hell days are over for you and I hope you continue to improve.

What she said This is my therapy - to prevent others from trodding the path we trod and to repay the debt somehow, pass it forward, and hear all your recovery stories. Thank you for your thoughts.

To Shayre - where are you??

[shayre]

I agree to you all...thank you for your encouragement and dedication! Mushroom and Ravenglass I used to talk with you both over a year ago when I was figuring out the whole celiac thing. I missed you:) I have not been on the site in sooo long. Kids and all of the autoimmune problems have just been overwhelming. I want my life back. As I said on another post, I have 2 small children to care for, and a husband who has intimate needs. Man, I just want to be a better mother and wife! They are understanding, but it is a strain too. You guys have been through so much. I am really wanting to get through this. I have confirmed by all manufacturers...except one...that they contain 1 or more ingredients that I cannot tolerate. I am petrified to take this drug (or any)after hearing what it did to you all...OMG! Thank you for the Humira idea...I'll check their ingredients. However, if I do nothing...I fear that I will not function very well. I've done all that I know how to do with my diet. I am limited to about 5 things that I can digest. Potatoes and Rice are my only starchy carbs, and I can only handle salad with a few veggies and olive oil. Eggs, org meat and fish are it. What else do I cut out? I am already hungry all of the time. Ugh! I wish that I could figure out how to do it naturally, but I feel that I'm already too limited. What is Paleo?

[Jestgar]

I am petrified to take this drug (or any)after hearing what it did to you all...OMG!

Just for balance, I took mtx for about a year and only had mild chills the day after I took it. It helped reduce my psoriasis and psoriatic arthritis. I stopped taking it because I didn't need it any more.

[mushroom]

I agree to you all...thank you for your encouragement and dedication! Mushroom and Ravenglass I used to talk with you both over a year ago when I was figuring out the whole celiac thing. I missed you:) I have not been on the site in sooo long. Kids and all of the autoimmune problems have just been overwhelming. I want my life back. As I said on another post, I have 2 small children to care for, and a husband who has intimate needs. Man, I just want to be a better mother and wife! They are understanding, but it is a strain too. You guys have been through so much. I am really wanting to get through this. I have confirmed by all manufacturers...except one...that they contain 1 or more ingredients that I cannot tolerate. I am petrified to take this drug (or any)after hearing what it did to you all...OMG! Thank you for the Humira idea...I'll check their ingredients. However, if I do nothing...I fear that I will not function very well. I've done all that I know how to do with my diet. I am limited to about 5 things that I can digest. Potatoes and Rice are my only starchy carbs, and I can only handle salad with a few veggies and olive oil. Eggs, org meat and fish are it. What else do I cut out? I am already hungry all of the time. Ugh! I wish that I could figure out how to do it naturally, but I feel that I'm already too limited. What is Paleo?

Ah, there you are!

Have you investigated the idea of getting the Methotrexate shots? I did not intend to put you off trying that med. because I know so many others (like Jestgar) who have benefitted. The TNF inhibitors are a last resort drug usually because they are very expensive, and have a lot of potential side effects.

As for the Paleo diet, you can read about it here: Open Original Shared Link I have often wondered if I should take that plunge since I have a huge lectin problem but those in dairy do not seem to bother me (or so I think ) And I do love dairy so. If you did it you would have to give up your potatoes and substitute other root vegetables for your starchy carbs, like parsnips which I love. But it sounds like you are fairly close to Paleo already... and with arthritis all the nightshade family is good to get rid of.

/edited to say: Link is not working. I will "work" on it.

Try this one in the meantime: Open Original Shared Link

Edit 2: Okay, working now

[shayre]

Ok. Just saw my Rheum doc. She wants to put me on Plaquenol now, and a little prednisone for a month. I will have to research both to see if it has gluten or my other intolerances in them. Anyone know already? She said the back-up plan in Embril or Humira shots. Any opinions?

[mushroom]

I did quite well with Plaquenil as far as the RA was concerned; it just made my psoriasis worse. I cannot handle prednisone any more after all those treatments for poison oak. Eventually Plaquenil stopped working on the RA altogether. That is when I started on the Humira which has been a godsend. I would try the Plaquenil for now - I don't think there is a generic for it but haven't checked - because you may be one of the lucky ones for whom the diet cures their RA.

[RobinsEggBlue]

Hi~ I'm new here to this forum. I'm so glad I found it as there doesn't seem to be much information out there for people with RA and food allergies. I have RA/Reiters and Celiac (positive for 2 out of four genes). I'm 53 and female.

If you go over the alphabetical list you will see lots of medications that are ok to take. Plaquinel is OK as is leflunemide. But, entirely missing from the list is ALL of the biologics and methotrexate. I have called and spoken to either an RN or a pharmacist with both Enbrel and Humira. The Enbrel RPH told me that they could not guarantee that the enbrel was made with ingredients without wheat. It all depended on the batch and where the ingredients came from.

The Humira RN told me that yes, one of their ingredients used probably has a wheat basis depending on the supplier at the time.

This explained to me why the Humira made me feel worse! Originally the Enbrel worked at the 25 mg dose but I got freaked out reading all the possible side effects and I abruptly stopped it not knowing that doing so could throw you into a flare and that it did!

That is when I went back to Enbrel but bumped up to 50mg. Mtx was added along with Lefleunomide. I've been on Plaquinel now for about 1 yr with no problems noted.

But, ever since starting the Humira I got strange symptoms. Back to feeling glutenized plus nausea, dizziness, insomnia, early flu-like headache/fever, unable to wake up in the morning. These symptoms persist even after I changed to the Enbrel so I am thinking they are being aggravated by the other drugs with a gluten component.

I was diagnosed celiac first and then RA later so obviously the diet didn't prevent the RA symptoms for me. I'm not sure what to do now that I know all the drugs available except for plaquinel and the steroids have a gluten component in them. Where to from here?

I eat all organic/non-GMO gluten-free foods. No plastics are to be used and no microwaves. Doctors orders. I rarely eat out as notihing on their menus matches my requirements. It is the occasional meal at families homes that carries the risk even though they are mindful. I don't think they really understand just how careful I need to be.

BTW, my youngest daughter has Lupus and fibromyalgia. She was really sick there for a time and spent most of it in her bed. Still, she managed to finish college. I was so proud of her. She has now found out that she carries the same two genes for celiac that I do. Her symptoms were just different than mine. She also found out that eating gluten when you are celiac can screw up your fertility.

Thank you all for being here in this forum and talking about this issue. There doesn't seem to be much research into this, only that a gluten-free diet helps with inflammation, not about them being concurrent. I'm glad to have found you!

Mellan

[Row]

I'm a 20 year old, male, suffering from RA. I was diagnosed RA at the age of 13 following an accident in which seriously damaged my knees. I have only been on the Methotrexate for a little over one year.

Around 4 months ago I started to develop intolerance to certain foods, chocolate being a major trigger leading to ill health. A few times in the past two months I have experienced coughing small of blood and violent diarrhoea. The most serious being 3 weeks ago when I spent 9 hours on the bathroom floor having lost over 3 pints in blood through coughing then collapsing. After a hospital visit and a blood transfusion I decided to take this outburst seriously and I was sure there was a link related to food.

After mentioning my intolerance and my coughing/diarrhoea to my GP, she decided to do some tests which came back this week to me having Coeliac Disease along side a severe Lactose intolerance.

After reading your comments, I decided to check the ingredients to my Methotrexate 25mg injection. No where does it say it contains gluten, but, it does contain lactose.

I've done my research into both Lactose intolerance and Coeliac Disease, through my research I've found there is a link between the two. Also for my benefits, finding out that the Methotrexate contains Lactose, I shall be arranging an appointment with the rhmatology department pronto to change my medication.

I have other side effects from the methotrexate which would be great to have disappear also. I shall mention the suggested medication to my doctor and possibly try one of them out.

Many thanks,

Row

[mushroom]

@Mellan - Interesting about the leflunomide. I did not tolerate this at all - was sure it must have gluten but since I knew I would not be taking it did not check it out. Plaquenil was okay for several years until it stopped working, but methotrexate nearly killed me. The thought of taking leflunomide, methotrexate, Plaquenil and Enbrel all at once gives me shudders - that is a pretty potent brew! Why did you substitute Humira for Enbrel? I have used Humira for three years now with zero side effects I guess it would depend on how gluten sensitive you are and whether your particular batch contained wheat.. I do have to stop it when I have any kind of infection and I have a condition which makes cellulitis occur frequently. I have beeen off Humira now for 3 months, and miraculously have not experienced an RA flare although I have had some warning electrical signals in my toes and fingers occasionally. However, my psoriasis on my scalp has taken off like a hotrod I am evaluating how much worse it is going to get before I resume the Humira, on the off-chance that my diet (including eliminating nightshades) is actually having a positive effect on the RA. I have to fly to the US every year to get the Humira because it is not a covered drug here for someone such as me. Have you also eliminated nightshades? What kind of diet do you follow?

@Row -Welcome to the board Lactose in the methotrexate could help explain why I reacted so badly to it (since I had not already self-diagnosed myself as celiac but had determined I was lactose intolerant); one of the side effects I had with it was nosebleeds which I have never had before or since. I also experienced pulmonitis and mouth ulcers. I was only on methotrexate for about nine months and by that time was too exhausted to walk across the room. Your bleeding from the lungs could be a similar reaction to my nosebleeds and lung inflammation. Let us know what your rheumy appt. produces.

[Row]

A couple weeks after my last post I was told to stop all medication as I had another incident following the injection. Since then I have been off all my medication for safety reasons. I had my appointment yesterday about my medication, in our discussion we decided I should start clinical remission as since being medication free and on a gluten and lactose free diet I have felt amazing. I've got my own strength and immunity back for the first time in such a long time and it HAS to be down to my diet. I have an appointment on the 12th of December to see if I am still in good health, so fingers crossed all goes well.

As for the medication, if I am to have a relapse the doctor (which I'm not happy about) wants me to stay on a lower dose of methotrexate as she believes despite acquiring celiac and developing a lactose intolerance, the methotrexate helped me.

[mushroom]

Hurray for remission with the diet - long may it last for you!!!!

I do think you may have your causes and effects a bit mixed up. I believe the trauma from the accident probably triggered the celiac disease which then triggers the lactose intolerance because the part of your small intestine that gets damaged by celiac is also the part that produces the enzyme to digest it. And celiac is knkow to be a promoter of arthritic-type symptoms. And you may not have been aware of this sequence at te time.

I hope you don't have to go back on the methotrexate My arthritis flares and remits - I have just gone back on my Humira because I am flaring again Perhaps they could try you on one of the other DMARDS instead??? There is no doubt methotrexate helped my arthritis, but the side effects were it nearly killed me