Hi Hope yous are all well I got diagnosed with rheumatoid arthritis in December last year I am on hydroxychloroquine, folic acid and methotrexate injections in the past few months I have been feeling very sick atleast 2 or 3 days in the week and have a migraine lasting full days and nothing gets rid of it and am having to phone in sick to work I was just wondering if anyone else had this problem and if it was part of the RA
Thank you 😊
Does this follow the day you take methotrexate? It's quite common to experience nausea and headaches after methotrexate day, so many people opt to take it on a Friday evening so it doesn't interfere with work. Hydroxychloroquine can cause initial sickness too but that should settle down. They might need to increase your folic acid.
I don't think RA itself would cause you to be sick but migraines, possibly (?), and migraines themselves can cause nausea. I would speak to someone in your rheumatology team and let them know it's interfering with your work.
Welcome to the group no one wants to join 😊, I hope you find it useful, feel free to ask anything you like. Your sickness might be due to the mtx, it’s a very common side effect that can diminish the longer you are on it. Talk to your rheumy/nurse if it gets too unbearable, are you taking folic acid 6 days a week? I too get migraines but it’s nothing to do with my RA it’s more a stress related thing for me, maybe it is for you too as diagnosis is very stressful. I’d speak to your doctor if over the counter meds aren’t working. Let us know how you get on 🤗
Hi Thank you for your reply yeah I take folic acid 6 days a week and I am a little stressed as it is all new to me and I am not long diagnosed so it may be that I just wanted to check if it was a common RA thing as I know it is an autoimmune disease but may also be getting used to the medication
Thank you
All sounds quite familiar. I’ve been on Methotrexate for a while & I’m afraid I now have to accept a four day working week as I’m too unwell to work the day after I inject. It sounds like you’re having side effects. They can be pretty brutal. You should speak to your nurse, though, see what they say. For me, some weeks are better than others. I see it as the price I pay for now being able to walk (I was in a mess before the MTX) & although I hate having to live with such horrid side effects, on my well days, I can bounce down the street without a stick (!), on feet that don’t scream in agony. I’m so sorry you’re feeling the MTX hangovers. The migraines may be due to the stress associated with managing the RA, rather than the RA itself. I know that’s the case with me. Hopefully it will fade with time, but I can definitely say, it is a thing. It’s a juggling act with this disease. Good luck!
as others say it is most likely a side effect of the meds, as they are common side effects. Damage in the vertebrae of the neck can also cause migraines sometimes, especially if there is a lot of tension in that area. I would bring and discuss with your rheumatology team. They won’t know you’re struggling unless you tell them.
When I first started with mtx I felt very sick nurse told me to take folic acid once a day that settled it down, back to normal dosage now.
Hi, your symptoms sound very like a reaction to your medication. I can identify with that as I had all the same. As it’s early days your body may well just be getting used to the drugs but make a list of their frequency to tell the consultant when you next go. For the sickness I can heartily recommend to try wearing the travel bands for sea sickness. They are great at dulling it down and making it more bearable and you can wear them anywhere and as long as you like. I used to be on all the meds you list and used the bands all the time. I still use them for migraines and they help take the edge of those too. Well worth giving them a try. They are easily available in chemists and online. Good luck!
I was taking 2x200 of hydroxychloroquine which was making me feel nauseous so I dropped down to 1x200 taken at night and this helped . Get the foggy brain day and tiredness after methotrexate injection and take folic acid 6 days a week. Not getting bad headaches x
Hi, I started on on those 2 drugs 23 years ago, same symptoms plus my hair started thinning.
I told my GP and he wrote to Rheumatology and I also rang them to change. Came off methotrexate and went onto
Sulfasalazine & hydroxychloroquine both worked fine for a few years.
Then tried azathioprine & hydroxychloroquine, again worked well for a few years.
Then switch to new injection..Enbrel (lots of symptoms) then Humira injections great for a few years and then the new JAK inhibitor came out & I went on Olumiant (look it up).
Game changer.
The RA has to be active for the last 3.
I was diagnosed at 30, I was a mess. So much pain, couldnt carry my baby, brush my hair or open doors or mikl etc ..dragged myself to work then dropped a day to sleep.
Now I'm 52, Gym 3 times a week and Masters Swimming training 3 times a week. Obviously I've adapted things that I can do .
Sorry for the long post but my point is if you've given something 4 months and its not working try something else.
There are so many to try before you get to what I take so keep pushing & don'tdoubt how you feel. The right mix will make you feel normal.
You'll get there good luck x
Hi,
I took methotrexate for many years both orally and injecting eventually I really couldn’t tolerate the gastrointestinal disturbance. I took the methotrexate at night just before bed. Thankfully I didn’t have migraines.
I now take a drug called Filgotinib which has been fabulous with no side effects. This is a Jak inhibitor one of the newer drugs.
I know many folk who have tolerated methotrexate well, we are all just so individual we never know what our reaction is going to be.
Wishing you well on your RA journey
Hiya Moulinr. Unfortunately headaches can turn to migraine, especially if you’re prone to them. I used to have them pretty regularly prior to the menopause &, as discussed before, I have been on HCQ & remain on MTX. Due to timing I believe my migraines were hormone related rather than med, or stress, but may have be exacerbated by taking HCQ in particular with it also bringing on light sensitivity. I remember those days with no fond memories whatsoever so can really empathise. Full days lost needing to lie in a darkened room, hoping I’d fall asleep, not nice.
Please talk to your Rheumy nurse. With you being on max dose folic acid there's no room to increase them to help with side effects of your MTX, if they are to blame. Alternatively, although this isn't fully resolving the problem, you could ask if your GP will prescribe an antiemetic, at least until you can be seen in clinic. Also, appropriate/alternative migraine relief as nothing you've tried is helping.
I really hope these symptoms begin to subside over time. If necessary there are alternatives your Rheumy can offer, don’t worry.
PS I’ve just remembered that some react to a particular brand of HCQ (Quinoric), something about the excipients, but a change to Zentiva brand often helps, especially with nausea. Of course this isn't always the case but might be worth considering asking about if it's the Quinoric brand you're prescribed.
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