Are headaches the norm?...: Hi everyone, have not... - NRAS

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Are headaches the norm?...

wendywoo profile image
16 Replies

Hi everyone, have not written for a while, my father passed away suddenly and I have been looking after my 91 year old mum, and also my partner has had a small stroke. It all comes at once sometimes. Anyway, I decided to change the way I took my Methotrexate as I always seemed to get a bad headache the next day, or the day after, so I spaced the dose out a bit, 2 tablets in the morning, 2 in the afternoon, instead of taking them all together. Low and behold I awoke with a thumping head. So I might just take 2 tablets instead of 4 to see if I still get one. I am lucky, my pain is under control with a low dose of this drug, so I suppose if I experiment to see if I can take less and still be pain free I may avoid the headaches.

I also take Hydroxychloroquine each day as a combination, which I will continue to do. Will update on my progress next week. Also increased my water intake as it is easy to forget to keep hydrated.

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wendywoo
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16 Replies
sylvi profile image
sylvi

Wendy, i am sorry to hear that you lost your father and to add to your ordeal your partner is ill as well,it take a great woman to be able to cope with all that while having trouble with ra. So i would call you wonder woman for being able to cope with all that.

I take my hat off to you,well done.

Sylvi.xx

wendywoo profile image
wendywoo in reply to sylvi

Hi Sylvi, Thanks for your reply, as time passes things get better. My partner is ok now, just being monitored, I have threatened to change him over for a newer model .... ha ha. Have had to ferry him everywhere as he was not allowed to drive for one month, insurance purposes. Its my poor mum who is most in need, she is finding it difficult without dad, she was so busy looking after him, she is lost now, good that she has her little dog for company and I see her most days.Anyway must stop rambling on, lots of good health wishes coming your way.

Wendywoo xx

Hi Wendy - Sylvi is right you must be wonder woman - you poor thing to have had all this to cope with over such a short space of time. Re the MTX I'm really glad it's working. I'm on 15mgs now (6 tablets) and also appear to be lucky re the keeping pain at bay for the most part. I don't suffer from headaches the next day (today) but I do get hellishly tired and I get a foul taste in my mouth. I haven't tried splitting the dose up - I just take them all in one go after tea at about 6pm. I too find that I need to drink a lot of water and despite this I usually wake up with a very dry mouth over the coming nights after MTX day. Not sure what to suggest for the headaches, which you really don't need on top of everything else you are coping with. Have you thought of injecting MTX instead - that might help I think although I'm only going by what others have said really. Good luck and keep coming back whenever it all gets too much for you. TTx

wendywoo profile image
wendywoo in reply to

Hi Tilda, thank you for your comments, it all is a great help.

Take care,

Wendywoo

helixhelix profile image
helixhelix

Hi Wendy - I get headaches after MTX, and found that folic acid really helped. In fact I notice practically to the minute if I don't take folic acid the next day & day after because of the headache.

I too have had several people close to me pass away in the first few weeks of this year, so much sympathy. I've found that it really drained me of energy, and made me less resiliant to aches & pains. So look after yourself. Px

wendywoo profile image
wendywoo in reply to helixhelix

Hi, I was told to take the folic at least 3 days after taking the MTX, but when I went for my next appointment, someone else said just don,t take the folic on the same day......... so I think I will take it the next day when the headache is usually due, like yourself.

Thanks for your help.

Take Care

Wendywoo

helixhelix profile image
helixhelix in reply to wendywoo

I take my first folic acid exactly 24hours after the MTX - by which time I usually have a thumping head. And like magic the headache vanishes in about 30 minutes. We're all different, but worth a try. (I'm petrified of needles, so the idea of injecting myself is too scary).

Also, headaches were worse for first 3 months I took MTX, but have slowly got less awful. Px

nicki18 profile image
nicki18

Dear Wendy

So much sympathy and best wishes go out to you. I also get a bad headache after MTX and was just told a side affect I had to put up with so sorry I can't help with that one

Take care

Nickix

wendywoo profile image
wendywoo in reply to nicki18

Thanks Nicki, yes perhaps I will just put up with it, but at least I know I am not alone with this.

many thanks

Wendywoo

mildy profile image
mildy

hi wendy i like yourself experienced real bad headaches after taking my methotrexate so much so i actually stopped taking it much to my consultants concern it was only when we discussed the side effects did he start me on methotrexate again but this time by injection form and my headaches didnt return,my injections are given to me by my husband who thinks he is now a qualified doctor because at that time i couldnt hold the needle let alone inject myself so it might actually be worth discussing it with your consultant to try the injection it may stop your headaches

wendywoo profile image
wendywoo

Hi mildy, thanks for replying, reading your blog I did not realise that you actually had to inject yourself if your were on injections and not tablets. I thought you had to attend at the doctors or clinic for a monthly dose. Is it like a diabetic injection? Lots of you are on injections, do you all "do it yourself" so to speak. Learning all the time, as they say...

Yes Wendy, the weekly MTX injection is like the insulin injections, same type syringe, very short tiny needle. Mine come already filled syringes, just have to take the cap off, swab top of thight with alcohol square and insert needle, push plunger, Done in seconds. After a while, you can do it so quickly you hardly remember doing it. I usually take mine on Friday evening, just before bed time, so the tiredness often felt, is slept through. Good luck with that, I think you will find the dose even works better, as many people do not completely digest the pills, so don't get full benefit of the drug. Loretxx

SarahKate-NRAS profile image
SarahKate-NRAS

Hi Wendywoo

It sounds like you have had some good suggestions from everyone already. Folic acid can really help with the side effects from methotrexate, but should not be taken on the same day as the methotrexate. And often you are able to switch to the injectable form of the drug if these side effects are not tolerable. However, I would always stress how important it is to discuss with your rheumatology team if you are considering changing the dose of your methotrexate, or your folic acid.

Kind regards

Sarah Kate

NRAS Helpline

hope your headaches are better

wendywoo profile image
wendywoo in reply to

Hi Summer, yes thank you, it seems that if I take the folic acid within 24 hours of taking the mtx, the headaches have lessoned. But I am also on a daily dose of Hydroxychloroquine which I think sometimes is also responsible for the odd headache. It may also be to do with the change of life, but I really cannot pinpoint what sets them off. I think sometimes stress can start them as I also get stiffness up the back of my neck. I have found that Anadin does not shift them anymore, this used to work. Thanks for your good wishes.

I am pleased for you that the headaches have lessoned, yes taking the folic acid the day after methotrexate helps, and you are right hydroxychloroquine can cause headaches too, as can tension/ stress it is a bit of minefield!

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