Folic Acid beat me up - WHY?

[squirmingitch]

Yes, I have celiac, I have also recently been dx'd with rheumatoid arthritis & been prescribed methotrexate for the RA & since methotrexate depletes folate in your body then you have to take a folic acid supplement every day. I have not yet begun the methotrexate as you only take that once a week so I was waiting for the day to take that. Meanwhile, I thought I would begin the folic acid so I took one yesterday after lunch. I felt good yesterday, very good. I felt very good last night. I went to bed feeling very good. I awoke this morning, still laying in bed, feeling like I had been hit by a freight train. Everything in my body aches -- all my joints, all my muscles. My sinuses were stuffed up on awakening. My heart was pounding in my ears & beating fast. I feel only slightly better this afternoon after having taken 2 Advil after breakfast & 2 more after lunch. Parts of me are sore & achy that have not been sore & achy in literally years!

No, I was not glutened. I eat only Whole Foods -- period -- PERIOD. I have done NOTHING different for a minimum of the last week. This is the folic acid I took -- gluten free and the dosage prescribed by the doc.

https://www.swansonvitamins.com/natural-factors-folic-acid-1-mg-90-tabs

I have checked many websites about the side effects of folic acid & what I am experiencing is none of those. I have no symptoms of being allergic to folic acid. 

Does anyone have any idea what could be going on? Why this is affecting me like this? I am at a complete loss! 

 

[GFinDC]

Hi Squirmy.

I don't know the answer, but being a man that won't stop me from talking about it!    

Therefore, somewhat dubious thinking lies ahead.

First off, could it be the arthritis has flared up?  Maybe the extra folic acid kicked off an arthritis flare for some unknown and irritating reason?

Here's a short article on supplements to take with RA.

https://www.webmd.com/rheumatoid-arthritis/vitamins-ra#1

They say that Vitamin D is important to keep up on.  They mention several other nutrients too.  Although not vitamin K which I think may be helpful to take with Vitamin D.

Vitamin D

What it is: A nutrient that your bones, muscles, and immune system need. Your doctor can check your vitamin D level with a blood test.

Why you need it: Your body needs it to use the calcium you get from food or supplements. RA tends to be worse in people who are low in vitamin D, but it isn’t clear why.

Here is an article about a man on methotrexate who had a psoriasis flare after taking L. methlyfolate.

My understanding is the methotrexate treats the psoriasis by interfering with the metabolism of folic acid.  So when he took bioactive folic acid it nullified the methotexate's effect.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5192351/

...

Given that methotrexate's successful treatment of psoriasis is owing to inhibition of folate metabolism, it is logical that concurrent administration of L-methylfolate, folate's most biologically active metabolite, would significantly reduce its efficacy.

...

I don't know if this helps any.  (insert man-shrug here).

Edited January 23, 2019 by GFinDC

[squirmingitch]

Thanks gluten-free! Better a man try than no try at all so I certainly appreciate the gesture. 

Yes, I was thinking today that it could possibly be coincidental with a RA flare but boy oh boy those are some long odds for sure! It doesn't feel like the last flare though but since I'm new to RA & the signs of an oncoming flare or even how flares may differ -- in other words - a newbie -- then I can't definitively say it's not an RA flare. It seems only time will answer that question.

I'm good on my vitamin levels. My doc does check them once a year & B-12 twice a year, iron is standard every time I get any labs at all. The only vitamin I've ever come up short on is oddly enough Vitamin A. I have no doubt I'm good on the D. I drink milk 3 times a day & the carton says that gives me 75% of the needed D. Plus, I live in FL & every day after lunch, my dog & I go out on the front porch where she lays on the brick steps & gets her adored sun bath and I sit & get my Vitamin D.

Well, I will see what happens over the next few days now. Drat it all, then I will be obliged to take one of the Folic Acid supplements again to test if that is indeed causing this. 

[kareng]

A cold? Flu?  

[GFinDC]

That sounds nice Squirmy, sitting on the steps absorbing the vitamin D with your woofer.     Sure seems like a good way to get it to me.  I found a page listing RA forums that might be helpful.  Maybe some sleuthing on them will turn up a clue.

https://www.healthline.com/health/rheumatoid-arthritis-forums#1

[squirmingitch]

49 minutes ago, kareng said:

A cold? Flu?  

Nope. Thanks Karen

[squirmingitch]

18 minutes ago, GFinDC said:

That sounds nice Squirmy, sitting on the steps absorbing the vitamin D with your woofer.     Sure seems like a good way to get it to me.  I found a page listing RA forums that might be helpful.  Maybe some sleuthing on them will turn up a clue.

https://www.healthline.com/health/rheumatoid-arthritis-forums#1

I will take a look at those Gee-Eff. Thank you. I googled that before & didn't come up with much of anything. I did join 1 but it's not very active or knowledgable. Your link appears to have a lot more options. 

[icelandgirl]

Hi there,

I'm so sorry that you are feeling so poorly.  ((((Hugs))))

Have you been tested for the MTHFR gene mutation?  My understanding of it is that those who have the mutation can't process folic acid or folate correctly and that could cause all kinds of issues.

Just a thought and I could be way off.  

I hope you feel much better tomorrow!

[cyclinglady]

Oooh, I like Icelandgirl’s response.  Consider a methylated form of folic acid and increase natural food sources (e.g. leafy greens).  

When I was diagnosed with celiac disease, my folic acid and B-12 levels were very elevated.  I did not take supplements (my new doctor thought I was taking copious amounts of supplements), but I was consuming products like Silk soy milk which adds B-12.  Once off the soy milk (I got dairy back), my b-12 serum levels dropped into the normal range.   I am guessing that my body was unable to process the unmethylated  vitamins that were added to the soy milk. 

This is just a theory on my part.  

[squirmingitch]

Thank you both! No, I have never been tested for the MTHFR mutation. Interesting. I will talk to my doc about doing that. Thanks!

cycling lady, I know on the 1 forum I'm on one of the gals mentioned she has to take "the active form of folic acid which is Leucovorin Calcium". I think that's what you would be talking about?

 

I feel better today, much better especially as the day wore on. Not back to where I was on Tuesday but way better than yesterday. So it looks like I'm bound to try the folic acid again in a couple/few days & see if there's a repeat of getting beat up by it.

[Posterboy]

Squirmingitch,

As quick as your symptom's developed .... I would say the Folic Acid too via a MTHFR gene defect.

Here is a good article on the topic.

https://www.dietvsdisease.org/mthfr-mutation-symptoms-and-diet/

I hope this is helpful but it is not medical advice.

Posterboy,

[Posterboy]

Squirmingitch,

I am always doing research for myself or my friends.  ... I had come across this research on RA for a friend's wife before but GFinDC triggered my mind to remember it.

Look into Seleinium (Brazil Nuts) and Vitamin K they might help your RA.

Here is two links about these nutrients.

https://www.researchgate.net/publication/5366740_Vitamin_K_and_rheumatoid_arthritis

https://www.ncbi.nlm.nih.gov/pubmed/4001893

And here is two links on the power of Niacinamide with methotrexate to help protect your liver for your RA treatments.  It works in a complementary manner to improve your results.

https://www.ncbi.nlm.nih.gov/pubmed/12890690

https://www.sciencedirect.com/science/article/pii/S0306987798907927

You should also research about Willam Kaufman he did good work on early RA research now a long time forgotten.

I hope this is  helpful but it is not medical advice.

As always 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

[icelandgirl]

On 1/24/2019 at 4:46 PM, squirmingitch said:

Thank you both! No, I have never been tested for the MTHFR mutation. Interesting. I will talk to my doc about doing that. Thanks!

cycling lady, I know on the 1 forum I'm on one of the gals mentioned she has to take "the active form of folic acid which is Leucovorin Calcium". I think that's what you would be talking about?

 

I feel better today, much better especially as the day wore on. Not back to where I was on Tuesday but way better than yesterday. So it looks like I'm bound to try the folic acid again in a couple/few days & see if there's a repeat of getting beat up by it.

I'm so glad you are feeling better.  If you try it again, let us know.  You are braver than I am.  I've had bad reactions to medications before and am terrified of having them.

[Awol cast iron stomach]

Nothing to add sounds like the group has you covered. Just chiming in to say I hope you feel better real soon, and you find a folic acid that works for you if you determine its this particular one turns out to be a culprit.

[squirmingitch]

Thanks Posterboy, Iceland & AWOL,

I am going to try it again but this time I'm going to take a 1/2 pill. I have to do it to find out. Who knows? What I experienced could have been some weird coincidence.

I mean, not too long ago, I ate an avocado - something I have eaten regularly for the past few years - and within one hour my throat became terribly sore & felt like there was something stuck in it - a golf ball type effect. I wondered if suddenly I had become sensitive to avocado. Then I found out our throats have a joint & it is not uncommon at all for that joint to be affected with RA. Avocados aren't a problem at all - it was just a coincidence.

I'll let you guys know what happens.

[squirmingitch]

Hello everyone! I said I would post an update & so here it is. I am happy to report I apparently don't have the MTHFR mutation or at least that has nothing to do with the folic acid issue I thought I had. 

I took that 1/2 pill of the folic acid on Tuesday & was fine. Woke on Wednesday feeling fine. Feeling fine enough to at least try the methotrexate (MTX) for my RA. I am prescribed 7.5 mg once per week. These come in 2.5 mg tabs so my dose is 3 tabs, but being somewhat wary of a chemo drug that most say makes them nauseous, and since celiac seems to have made me have more reactions to things, I decided to dip my toes in the water by only taking 1 pill. If I was going to have a bad reaction, I wanted to keep it to a minimum. I was fine. That was right after breakfast. I had no negative reactions during the day. I had read that if one is prone to getting nauseous from the MTX, you can try splitting the dose throughout the day. So after dinner I decided I felt brave enough to take another pill. I am glad to report that turned out well too. You don't take folic acid on the day you take the MTX but on all other days. So on Thursday & today I took a 1 mg folic acid pill & I'm good.

I don't know what happened after that first day of folic acid when I felt like I'd been hit by a freight train. All I can think is it must have been a very short RA flare lasting just 1.5 days. I don't know. I'm still learning about how the RA feels & acts.

[cyclinglady]

I am glad you are feeling better.  It seems like you made a wise decision to ease back slowly into taking the folic acid. 

[GFinDC]

3 hours ago, squirmingitch said:

Hello everyone! I said I would post an update & so here it is. I am happy to report I apparently don't have the MTHFR mutation or at least that has nothing to do with the folic acid issue I thought I had. ...

I am very glad to hear you aren't a mutant!

And the folic acid isn't a big problem either! 

Thanks for letting us know.

[squirmingitch]

Hey GFinDC, I never said I wasn't a mutant. 

Thanks you two! 

[icelandgirl]

I'm so glad you are feeling better!!

[squirmingitch]

Thank you dear!