Headache , want to try some folic acid .

[Strayleaves]

Hi all ,

I am on Methotrexate , Humira (switching to Enbrel on Monday ) , folic acid twice a week (5mg tabs). I have been getting heaps of headaches , for a while now . I have been reading and few people have suggested maybe it's the methotrexate . I try to drink a fair amount of water on my meth day , which is a Monday . At present I have a cold , dr said it was ok for me to take meth yesterday....but all day (and most of yesterday ) ......have a disgusting headache . ..... have been in bed all day today ......it's 10pm , and I'm " over it ." I know I can't rule out sinus headache , but it just feels like the others , but worse.I have read some take extra folic acid , and their headache goes within 30 min .....I'm not sure of the dosages though , because I think over there you may use 1mg tablet . I have taken panadol and brufren.

Thanks for any ideas

Karen

[Barrister]

I got crashing headaches when I was on Humira ( no MTX taken then). They gradually got less and less until after about 3-4 months I wasn't getting the, anymore. I'm now taking Enbrel and MTX but get no headaches. You could try taking your medication at night then hopefully you would sleep through any side effects. That's what I do. I take folic acid six days a week but that is to help the liver as MTX can cause folate deficiency and also helps prevent the nausea from the MTX. Clemmie

[Strayleaves in reply to Barrister]

Thanks clemmie,

Much appreciated. The headaches though seem to be for most of the day .....and into night . Karen 😒

[Barrister in reply to Strayleaves]

Yes mine were like that when I was taking Humira, lasting from the day after injection until 5-6 days later then again after the injection. I've only had nausea & feeling yuk since starting MTX, no headaches that I could attribute to MTX and Enbrel, only a site reaction for the first few injections. Clemmie

[nomoreheels]

I don't get headaches from MTX but like you have read that some find that taking folic acid eases them. I think you can only ask, I say that because your script will need to be changed from 8 tablets a month to your new dose equivalent. I take mine 6 days a week, just not the day I inject, 5mg as is the norm in the UK, I think you may be mixing us up with the US where I believe it's more normal to prescribe 1mg.

I was going to say I hope your cold eases soon, summer colds are rotten but it's not your summer is it?! I hope it eases soon anyhow.

[Strayleaves in reply to nomoreheels]

Hi and thanks nomoreheels.

Ok so it is in the USA where they use 1mg tablets .... yes I'm prescribed 5mg tabs 24hrs before meth and 48hrs after meth dose. I think that's standard here in Australia.

I ended up taking 5mg last night ......to see if it would take the headache......... still have headache this am, although maybe less intense.......but have only just got up ..

Yes it's winter here .....jumper on and sitting by heater......11deg.

😁 I'm sure nothing like your winters though !!!

Karen

[nomoreheels in reply to Strayleaves]

I hope your head eased as the day went on?

[Strayleaves in reply to nomoreheels]

Thanks ,

I'm happy to say it did settle down and only mild one now .

👍

[nomoreheels in reply to Strayleaves]

Good. 😊

[Hidden in reply to Strayleaves]

They use both 1mg & 5 mg tablets in North America. My first rheumy said 5 mg folic acid 7 days aweek. My 2nd rhuemy said 1 mg folic acid 6 days a week. my 3rd rheumy said " how much folic acid do you need to control your side effects?".....we all are different. I don't know the answer of how much folic acid to take.....but I do preach that everyone should follow the advice of thier rheumatologists in the begining of your MTX journey...then question the dose of folic acid if you are still having side effects.

[Strayleaves in reply to Hidden]

Hi suzannedale

Thanks for that input . I guess the main side effect being nausea .? I let my rheum know , not long when I went on meth . About the headaches.....he said we will just keep an eye on it .!!

Do you happen to know if swithching to injections , may help with headaches ?

Thanks

Karen

[Hidden in reply to Strayleaves]

Both injections & tablets caused me headaches until I got the right folic acid dose for me. The right dose for me is 5mg on mtx day & the day after. I know in Europe it is stated in your Health guidelines not to take folic acid on mtx day...

North America, the belief is : All studies agree that folic acid reduces methotrexate side effects, but it is uncertain how much, if any, folic acid reduces the effectiveness methotrexate.

I do believe you should follow the guidelines of your rheumatologist. If you are still having side effects of mtx, then ask your rheumy "Why is it in Canada that people who take mtx have no set rule of how much folic acid?"

[Nettac]

I do wonder sometimes if the banging headaches are due to inflammation. I'm not on the drug you take, but have started waking up with evil headaches. Sometimes throwing up.

I do suffer from migraine, but these are different. The only thing that seems to help is pouring cold water on my head...that and throwing up!

I'd be interested to see how many more folks suffer with headaches now.

[Strayleaves in reply to Nettac]

Hi Nettac

Yes that is interesting . Inflammation everywhere else in the body , why wouldn't it not affect the brain . My hubby often gets headaches ......I've always seemed to just not get them ....until know.

Karen

[Hidden]

I take 5mg of folic acid a day 7 days a week. In North America, this is not unusual. Ask your rheumy to increase your folic acid.

[Strayleaves in reply to Hidden]

Thanks suzannedale

I will ask when I see him next. I wonder why the dose differences between countries?

Karen

[Hidden in reply to Strayleaves]

I don't know why either.

[JennyA123]

Hi my Dr. Said it won't hurt taking folic acid you can ask, I'm taking 30 mg per week. Helps with the side effect, good luck.

[Strayleaves in reply to JennyA123]

Thanks JennyA123

Will look into it.

Karen

[ruth_p]

I get headaches from taking mtx which taking 5mg six days a week helped but then an increase in in mtx brought them back. I changed to injections and reduced the dose which again helped.

[Strayleaves in reply to ruth_p]

Thanks Ruth .

Yes , my headache back again this morning ... I am wondering if injections would be a better way to go ( maybe after a trial of increasing the folic acid)

Thanks for the help

X

[Debba]

Hi Karen, I'm in Australia and take 20mg weekly injection of mtx and 5mg folic acid 2 days after injection. My headaches have eased 4 weeks in to injections. I still get a little nauseous and tired got 48 hours after injection. I couldn't tolerate the oral tabs, made my vomit

[Strayleaves in reply to Debba]

Hi Debra

Thanks for your reply. What state are u in ? I'm near Newcastle , NSW Glad to hear you are doing better on the injections . Can I ask if you are on any other treatment ?

Hope you have a nice weekend .

X

Karen

[Debba in reply to Strayleaves]

Hi Karen, I'm in central QLD. I have just recently got off prednisone. I take amitryptline at night

[Strayleaves in reply to Debba]

Hi Deba

Glad to hear you aren't on the prednisone now. I'm guessing it's ra you have . Central Queensland .... wow ....do you travel to the rheumy or do they visit ?

[Witness2]

So glad to have discovered this thread. Nobody seems to understand my headaches but you guys clearly do! They started at the same time that I started Enbrel. I'm convinced that they are caused by the injection - I very rarely inject without having one at some point in the following 48 hours and my GP was convinced my symptoms were a sinus infection. I managed to see an ENT consultant when I had one and his tests showed that I didn't have an infection so it must be some sort of neuropathy - facial pain as well as up the back of my neck often. I have deep tissue massage once a month which helps enormously by loosening all the muscles tendons and fascia that put pressure on pain censors at the top of my trapezius muscle where it joins my skull. I am switching to Benepali soon and fantasise that I won't get headaches anymore...hmmm! I am going to see if folic acid can help, thanks everyone for that info. I had no idea and no HP has ever mentioned it to me.

[Strayleaves in reply to Witness2]

Hi Witness

I am just so over this one ......I really feel like I've had it for a week ! (Actually , come to think of it .....I Have had it for nearly a week ! )

I started getting mine after the methotrexate , but they have been worse the past three months , since I've been on the Humira..

Good luck with yours

Karen

👍

[Debba]

Hi Karen,

No I have vasculitis. I Skype with my consultant at my local doctors surgery with my GP. I visit him as required and it's a 7 hour drive or a 1 hr flight

[Strayleaves in reply to Debba]

Wow ,

I did think maybe you would have a drive...but that's a fair drive. .... I guess you would have to be very organised with all your medications etc....

[Nikma]

I have been on MTX for about 3 month. My RA has improved, but i have such bad side effects (like having a very bad hangover), which starts about late afternoon the day after i take my MTX dose (20 mg a week). The worst side effect are migraine and fatigue. I talked with my rheumatologist about it and he suggested injections, which i started with this monday, but OMG, what a horribly 3 day migraine i had. Anyone have the same experiences?

Thank you.