methotrexate.....Side Effects after more than 6 months??

Hello All

I have been on Methotrexate now for more than 6 months. I started on 10mg weekly (5mg 2x weekly) and moved up to 15 mg (5mg 3x weekly) With 1mg daily folic acid Then increased to 2mg to help prevent the "bad" side effects. Metho had been working very well for me up until recently. It had greatly improved the results of my PFT's and I was feeling pretty good with not too many breathing complaints.

After being on the 15mg weekly for several months, I started getting really nasty mouth sores and my Rheumatologist first increased my folic acid to 2mg daily. This helped at first but then the mouth sores came back with a vengeance. Next, she told me to begin taking all of my Methotrexate on the same day once a week. All 15mg at once. So, I have been doing this for about 8 weeks now, perhaps a bit longer. The Mouth sores are a thing of the past. However, I had found first an increase in acid reflux (which I thought was odd since I had surgery (Nissen Fundoplication) 3 years ago to repair) and increasing stomach upset. I have always had IBS, but generally leaning more toward the constipation end of the scale. With this change to 15 mg all at once I would now get diarrhea after the 15 mg dose. Ok. To be expected perhaps. At least it isn't vomiting or anything, right? However as the weeks go on this now had become more stomach pain and cramping with diarrhea following the dose of the 15mg, and finally this week after my last dose on Friday, the most awful cramping and pain and diarrhea that just will not go away. It is not constant, but I cannot eat solid food! Every time I eat the stomach cramping begins again and I am back in the bathroom. Nothing stays! I have really been pushing the extra fluids in hopes of not getting dehydrated.

I was hoping perhaps that this was just a bug and it would go away in a few days. The problem is that when I do not eat food, I am not sick! (Other than feeling really run down from lack of food!!!) I still have so much to do with 3 kids so I cannot just sit and rest so I am burning up fuel and not replacing it and it is starting to take a toll! Even eating something as simple as plain toast sets my stomach rumbling and within an hour or so I am back in the bathroom feeling like my stomach is on fire. It has been 5 days or so now and I am thinking perhaps it may be a good time to call my Rheumatologist and see what her thoughts on this are, but I was wondering if anyone else who has taken methotrexate has had similar experiences after being on it for a while. I feel like I am starving! I want to eat but it has bad consequences.UGH! (not a great way to diet! LOL!)

And Paradox, if you happen to be reading this.....I had read that High MCV levels in the blood mean that your Vitamin B12 and folic acid levels are too low. My MCV's have been flagged as too high for quite some time now. Could this be the underlying problem? Not enough folic acid with the methotrexate? Is it ok to take more than the prescribed 2mg folic acid daily or does one then need to consider something like the Leucovorin in place of regular Folic acid?

Be well

Dawn

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Hi, I am no longer on metotrexate however my B12 is very low. I give myself shots once a week of B12 and my neuro says I will be on these for years.

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Oh ya Dawn low B12 can cause many serious problems including your stomach.
Good Luck.....

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Have you considered switching to the mtx injections? This would avoid the gi upset and since the mtx seems to be helping the sarc, I would think its worth a shot-pun intended! LOL!! I went directly to the shots because my IBS is so bad I just knew it would wreck havoc on my tummy and the shots are not painful, the needle is small and they really don't sting.

OTC Imodium should help slow things down a bit. Also, when my tummy gets that rilled up, I go to white rice for a day or two and it usually helps to settle it down. Baby wipes feel good on an irritated bum, softer than tp! Feel better!

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I agree about the injections. I have been on them since last march and I dont have any problems with my stomach or too many side effect either. Good luck!

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Hey Guys


Do you do your own injections or do you go to the hospital and have them done there? Perhaps this would help. I put in a call to my rheumatologist yesterday and am currently awaiting a phone call back from her. I will ask her about the injections when she calls.

Sherry and Michele, what doses were you guys on? is it the same dose for injection as it is orally?

Thanks,

Dawn

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Hi Jacquepogo

Thanks for the reply! For several months now, I have been trying to drink one 32 oz bottle of power ade daily as it is high in vit B12. Each 32 oz bottle contains 4 servings, and each serving contains 10% of the RDA of B12 so I figure thats 40% right there, but that is still not enough. MCV's are still high which means B12 and Folic acid are still too low. I do not like doing the power ade route because not only is it giving me B12 but lots of extra sugar and 240 additional calories that I do not want either! UGH! I had mentioned B12 injections to my primary care doc before and he blew me off (as usual!) I will ask my rheumatologist about these also when she calls me back. Are the B12 injections covered by insurance? I have noticed that even adding the B12 I get from the power ade I am not needing to take as many naps as I used to so I do know it definitely does something!!! Prior to that I was having to nap every day by 1:00 in the afternoon. It was awful. Now, I rarely have to do that anymore. What I didn't know was that it could also effect the stomach too. Thanks for the info!!!!

Be well!

Dawn

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Typically it is the same dose used orally and for the injections. I think I was on 18mg or there abouts, its been a couple of years now. You will get vials of the mtx and your own syringes. You draw up the proper dose into your syringe, wipe your hip or bum area with an alcohol pad and jab it in and push the plunger! I give them to myself or sometimes I would have hubby do it. It is not difficult or painful, the needle is very fine and it really doesn't burn or anything. Its no big deal. I would have some nausea shortly after but nothing serious. I did my shots on Friday nights and went to bed and slept most of it off. Sometimes I would want to sleep late the next day or need a nap but I think I need a nap most days so its hard to tell if it was the mtx or the sarc!

My biggest side effect on it was hair loss. If you are having good results but the gi upset is too much, I really think the shots are a very good option for you.

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Hello! I just began the Methotrexate injection last Friday. I take 15mg sub q every friday. I was fine on Friday but by Saturday was very fatigued and nauseated. I did have diarhhea once. By Sunday I was vomiting horribly and had horrible stomach pain. I didn't start feeling better until Tuesday. I take Folic Acid supplements 1mg 2x daily and Pred 20mg a day. I am hoping this weekend isn't like last. I feel your pain!!
Melissa

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Hi Dawn,

B12's are legal to purchase from Canada. I also had the same issue with my Dr' and finnaly took my health into my own hands and bought the B12 and needles from Canada via the internet. Its up to you.

Just a thought!

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Hello Michele and All!!!

My Rheumy Called me back and we discussed what has been going on. She said that the change to taking my metho only once a week could be the cause of my stomach issues. Her advice is as follows: First skip this upcoming weeks dose on saturday. second, she is calling me in a script for protonix as well to try to better protect my stomach, as I also take Clinoril twice a day which is a NSAID. She said when she sees me in 3 weeks we will reassess the situation and if I am not feeling much relief from the stomach issues then we will switch to the methotrexate by injection(but to let her know the week before so she can call it in so I can bring it with me so they can show me how to do it!)

She is also sending me for more bloodwork to check exact levels of B12 and Folate(as opposed to the generic MCV that just indicates that they are low). She feels that much of the numbness I have been experiencing (as mentioned in other posts) could also be from lack of B12, and if my primary had done something (like paid attention to my labs and listened to me) then perhaps I would not have had to suffer with so much numbness for so long. She told me to still see the neuro next week to find out what the clump on the T5 vertibrae is anyway but she says, (like jacquepogo above with her neuro...)B12 injections could be something that the neuro may want to do for years to come to prevent some of my numbness!!!(finally , perhaps a light at the end of a long tunnel here????)

She says that perhaps my breathing problems have increased over the past several weeks due to the diarrhea because if the metho is causing me to have the runs right after I take it then I am not really processing it through my system and there is a very good chance it is getting flushed right out and this is causing increased inflammation that the metho would normally be preventing. UGH! what a mess! Not breathing well bites because i like to talk as much as I like to write!!! LOL!!!! Can't talk when you can't breathe! (lucky for everyone's ears around my house!) Hee hee!

I am just pleased that there is an end in sight! things were starting to feel pretty grim for a bit between the numbness, the breathing then the stomach issues to top it off! At least now I have a direction to go in and hopefully a way to get back on track! I wish all docs were like my rheumatologist. She is one of the few docs who really listens and never makes me feel like I am being rushed or that she is blowing me off or not listening! It is too bad that i cannot see her for all sarc related issues!!! Or for that matter as a PCP! She makes you feel reassured that you can get past what is going on and she will help to make it better! One of the very few I have encountered!!!

Thanks so much all of you for the advice and well wishes!!! I will keep you all posted!!!

Be well

Dawn

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Hey there Tee Gee!!!

I love your new Picture!!! It's great!!!!

I would love to be able to just shelve all of my meds permanantly, nevermind with the intent of starting over to see which ones are causing what! LOL! I swear i could make a seven course meal out of the meds i take every day! Blah!!! (wonder how many calories they all add up to????)
But Alas! it is not to be....My rheumy is adding Protonix to the mix as she is pretty sure it is the Mtx messing up my stomach and causing the "trots"! LOL! She says it can happen when you switch from 3x weekly to once a week. It fixed the problem with the mouth sores but caused the stomach thing instead! ICK! If this does not work she will try the injections instead and completely bypass the stomach. She says that the Clinoril (NSAID) with the Mtx could be causing issues but she does not want to switch to a narcotic pain med and neither do I, and this one has worked for me up until recently without problems where all of the others she tried, like Relafen made me sick anyways. This one was fine until the Mtx switch.

I am hopeful though that we are on the right track now!!!

Hope all is well with you!!!

Dawn

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Hi Dawn,
I don't take Metho but just wanted to offer my support as you have always been there for me. I can understand your stomach problems but not your cause. I hope whatever it is you feel better soon. My only advice is not to wait to call the doc that didn't help me:) Good luck and let me know how you make out!

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Thanks Princess!!

Hope you are finally on the road to feeling better!!!
I will get there eventually too!!

Be well

Dawn

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hi. When you inject methotraxate you can inject it also in your stomach or thigh too. Instead of mgs as for pills its ccs for injections. Its a once a week thing usually and it is usually a good thing to take it before you go to bed.

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hi. When you inject methotraxate you can inject it also in your stomach or thigh too. Instead of mgs as for pills its ccs for injections. Its a once a week thing usually and it is usually a good thing to take it before you go to bed.

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I currently take 10 mg methotrxate once a week. I usually have diarrhea that day (Tues) and Wed. not usually too bad > I take folic acid and B12, both pills every day but tues and wed. Also, when I was on the chloroquin a nurse friend told me to take L-lysine and zinc to prevent and heal the mouth ulcers. Also, you could have your physician order "magic mouthwash" which has some anesthetic and other meds . you swish & swallow about a tablespoon several times a day. I usually just turn the bottle up and take a swig!! these should help. We use it with several of our patients. It's a favorite standby. good luck. Beth

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HI Dawn
I just started on metho. 2 weeks ago. I do take 6pills( 2.5mg) once a week. So far I've only had a little bit of stomach pain the next couple of days. I do not take anything else. I do find that i get very tried the next day as well. Good luck!

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I inject 15mg methotrexate once a week, and take 5mg folic acid 5 days a week. My digestive side effects are now a thing of the past, and I only get a mild 'hang over' for about a day. The down side of this, is having to learn how to sc inject myself.

Mark

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Hi Beth

My Rheumy told me that having diarrhea the day that I take the oral Metho can be counter productive and that is why she feels I am now having difficulty breathing again. After having the diarrhea for several weeks "the day of taking my metho", she feels that perhaps I have flushed the Metho out of my system before it could have the beneficial, anti inflamatory effects, therefore causing my breathing difficulties to flare up after several weeks of this happening.

How long have you been having the diarrhea the day of and the day after? I don't want to see the same thing happen to you!!!!

I am really thinking that the injections might be a good thing for those who are not squeamish about needles as it completely bypasses the digestive system and this way we can guarantee that we are getting the amount we are supposed to be getting and keeping it in our bodies!!!! I think even if the Protonix does help my stomach I may still ask her to prescribe the injections anyways. I just really hate the helpless feeling of having difficulty breathing!!!

Now this "magic Mouthwash" you speak of, is that like a Nystatin liquid to prevent yeast?

I take 150 mg diflucan a week to prevent yeast overgrowth as i cannot stand the taste of the swish and swallow! (makes me want to upchuck! LOL!) I have never been good with liquid meds! My mouth sores were never caused by yeast though. (unfortunately, I tend to get that in other places. UGH!) The mouth sores are apparently contributed to the Metho and are something called Stomatitis(sp?) Big mouth ulcers that were very painful to the point that I had difficulty eating or brushing my teeth! I got these when I was taking the Metho 5mg 3x weekly but since she had switched me to the 15mg only once weekly, the mouth sores stopped completely (not sure why (perhaps it is the pills actually being in the mouth and partially desolving before you can swallow them several times weekly that causes this???)

I would check with your doc if you get the diarrhea though the day of and after. apparently this is not only annoying, but not beneficial either!!!!

Be well

Dawn

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ALL folks on methotrexate should be aware of this potentially serious problem. If you have this condition(which is easily tested for, you should: 1. talk to your Doctor. 2. take larger doses of folic acid and 3. perhaps lower doses of Methotrexate. Again ask your doctor if he has checked for this condition(MTHFR gene abnormality)
Here is one of many reports: "Drs. at Loma Linda University & the Univ. of Massachusetts Medical Centers have reported a case in which a standard dose of methotrexate resulted in life-threatening side effects. The patient was found to have a COMMON genetic anomaly in an enzyme(MTHFR) that plays a key role in folate metabolism. Methotrexate is known to deplete folate levels."

MTHFR stands for Methylene-Tetra-Hydro-Folate-Reductase. MTHFR is an enzyme, which we all have in the cells of our body. It is needed to metabolize and get rid of homocysteine. High homocysteine levels are a risk factor for blood clots in the veins (DVT, PE) or arteries (heart attack, stroke, arteriosclerosis). Some people have a variant of this enzyme, which is called "thermolabile MTHFR" or C677T MTHFR. It is due to a single mutation of the MTHFR gene.

The MTHFR mutation is extremely common:
40% of the population have the normal enzyme
40% are heterozygous for the mutation (i.e. have 1 variant gene). These individuals have some normal enzyme and some of the abnormal variant enzyme.
12% to 20% are homozygous for the mutation (i.e. have 2 variant genes & none of the normal enzyme).
I have this problem and had several serious problems until a Dr. friend of mine recommended I check for it(which my doctors had not done) I now take 5000 mcg a day of folic acid and am doing well. Again talk to your doc about this, the test is simple.

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