RA, MT X and Folic acid

[Whitegate]

After 3 years, I am getting a reaction 15 minutes after a daily 5mg Folic Acid tablet. My Rheumatologist is unbelieving so I guess I'm alone unless other RA patients have this.

[ruth_p]

What kind of reaction are you getting?

nhs.uk/medicines/folic-acid...

[Whitegate in reply to ruth_p]

Ectopic heart beats and intense feeling of un-wellness lasting 30 mins. Two pints of water seemed to help. Thanks - RMW

[RheumST]

My doctors prescribed 1 mg Folic Acid (with the MTX) and I am taking, with their blessing, 1 mg Folate, which according to research papers at NIH is more effectively used by the body. So perhaps, 5mg which is 5x my dose is too much. Perhaps others with MTX can also tells us about their Folic Acid/Folate dosage.

I have no joint pain whatsoever and I've been on this regimen for about 2 yrs now.

[nomoreheels in reply to RheumST]

Hiya RheumST. In the UK (& Europe) 5mg is the standard prescribed dose of folic acid with MTX. I take 30mg, so 6 times a week & on 17.5mg MTX though it does vary, initially I only had it once a week, then twice, it depends on need. We are rarely prescribed folate (folinic acid) in Rheumatology here like you are in the US, though it is used in high dose MTX usage as a preventative of side effects, as a rescue agent or an antidote. I think the difference is folic acid is the synthetic form, folate is more easily absorbed, as you say the body uses it more effectively, which may make the difference for you, I hope so. For such a regularly prescribed supplement I would think money is an influence to prescribe folic acid more commonly here in the UK, big differences in cost. Though doubtless if necessary it would be considered in the right circumstances.

[RheumST in reply to nomoreheels]

Folate 1mg is not carried in Walgreen's (common US pharmacy) or most local pharmacies but I was able to find it on Amazon (not my favorite vendor)

smile.amazon.com/Life-Exten...

It's 100 tablets and the US cost is $34 for 3 bottles, 300 tablets, so the price is not horrible. I don't much care for the company name (Life Extension) which is pretentious to put it mildly, however it has worked well for me. On my last checkup my doctor said we'll be looking at cutting back the MTX (after my next checkup in Oct) to see if my immune system is ready to be weaned off the MTX.

[nomoreheels]

Can you let us know a little more, how it's affecting you.?

[Whitegate in reply to nomoreheels]

Ectopic heart beats and intense feeling of un-wellness lasting 30 mins. Two pints of water seemed to help. Thanks - RMW

[nomoreheels in reply to Whitegate]

It was the quick reaction that made me wonder what your symptoms could be, that & after 3 years being fine. Most unpleasant & not helpful of your Rheumy to be seemingly dismissive. It may sound daft but try taking it with a little food, whilst you're eating breakfast if you take it in the morning as most of us do. Let us know how you get on.

[----54]

To begin, have you talked to your GP/PCP about the ectopic heartbeats? Whatever the cause, that isn’t something I personally would wait to report and have evaluated.

If the folic acid seems to elicit a reaction, have you/your healthcare providers considered whether you could be reacting to one of the inactive ingredients in the folic acid? Would your pharmacist/chemist be able to tell you if you’re using a different brand now or if the ingredients (excipients and fillers) changed if the brand is the same? Would it be worthwhile to ask them if they have heard of other patients reacting the way you seem to be?

In my experience, keeping a written record of symptoms along with when they occur and what else is happening can be helpful to patients and their providers. Photo and video documentation or anything that records or measures what is going on might be of use. Could you track of measure your ectopic heartbeats with some sort of device?

[Whitegate in reply to ----54]

Thanks, ---54. The ectopics have been common but infrequent for 40 years and are not AF

[RheumST in reply to ----54]

Your advice is EXCELLENT !!!

[----54 in reply to RheumST]

Thanks! It’s the kind of advice I’ve gotten. And docs like and benefit from records and data!

[QAGS]

what sort of a reaction?