Folic acid
Posted , 17 users are following.
people who are on Methotrexate, how often do you take folic acid please?
0 likes, 36 replies
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Notes on Folic acid
Smaslow vanessa74034
Posted
Paula2212 vanessa74034
Posted
My mum takes folic acid twice a week. MXT Wed, Folic Acid on Thurs and Sun.
shannonlea1218 vanessa74034
Posted
My rheumatologist prescribed 1mg and I take it daily, in the morning. I don't think there are restrictions with regards to other medications, but check with your pharmacist to be sure.
shabina09215 vanessa74034
Posted
I was diagnosed with RA in 2010 and prescribed to take one 5mg Folic Acid a week. I take my methotrexate on Mondays and used to take Folic acid on Fridays.
I was from 2010 to 2017 on 2 methotrexate tablets a week (5mg) but due to several flare ups this has gradually been increased to 10 tablets (25mgs) a week. Within months of going up to 10mgs my hair started thinning so rhuematiod specialist nurse advised me to take one Folic Acid (5mg) 6 days a week and not on days I take Methotrexate as before. My hair has stopped thinning but I am not sure it is due to additional Folic Acid as I am trying other things such as herbal shampoo and supplement called biotin.
Whilst I appreciate the hard work done by health professionals, I struggle on an on going basis to understand the rational behind how my team decides on my treatment plan.
vanessa74034 shabina09215
Posted
Hi Shabina, I totally agree with you. I have been taken off my methotrexate for about 6 weeks now due to high liver function, usually it goes down quickly after 3-4 weeks but for some reason it is still going up 😰. Everyday is a struggle and I am at my lowest point as I feel nothing is being done. Sorry for the moan lol
Smaslow shabina09215
Posted
shabina09215 vanessa74034
Posted
Hi Vanessa,
I joined this forum so I had a safe space to express how I feel. We are all allowed to moan as it is healthy to do so. Managing any chronic condition is hard emotionally and physically. One of the things that helps me is meditation. It's not easy and does not always take the pain away but provides a sense of peace. Take care x
Smaslow vanessa74034
Posted
Hang in there Vanessa, as shabina09215 said it is healthy to moan now n then . You know our auto immune disease doesn’t always show . Many days I feel so much pain and yet I have to put my big girl pants on and act as thou all is well... people have said many times you don’t look sick and I have to let it roll off . Knowing I now have a forum I can go to and share w/ others that know where I am coming from really helps. Never hold back we will always listen 💕
dix08091 Smaslow
Posted
shabina09215 Smaslow
Posted
Hi Smaslow and everyone,
I feel so much better since joining this group. I am still in pain, exhausted and trying to process, juggle and manage so much but knowing that I am not alone, can express my feelings and ask questions is great. Thank you all..😁💪🏼?🤝
gurpreet54807 vanessa74034
Posted
Jayjay1959 vanessa74034
Posted
Jayjay1959 vanessa74034
Posted
Mine should have read MTX Not hat 🤣🤣🤣
Vanessa and Shabina have you tried any other treatments alongside
I am injecting 25 mg mtx weekly and simponi (biological)
monthly 5 months in all good for me
However this deciease can morph what works now for you can stop I have been on many drug trials and drug protocols over the last 17 years I have lost count. I do have a direct phone number to my specialist nurse so don't suffer in scilence
You can always volunteer for a drug trial to access New treatments.
I too have been accosted when parking in a disabled space with people telling me I don't look disabled. Dispite walking on crutches (, I just hadn't gotten them out of the back seat.)
Try reading this on the internet BUT YOU DON'T LOOK SICK the spoon theory by Christine miserandion
When people say that to me I quote this and ask them to read it its easy enough with smartphones these days
And yes moan if you need to don't bottle it up ,
I also have found swimming and tai chi useful when able as RA is not just a joint problem it effects all the connective tissues too.
People don't tend to hear anything other than Arthritis and assume it's sore joints when it is so much more and can effect internal organs.
And if it hasn't then the treatment for it will do.
Sorry for the rant
By the way the lady that stoodtalking AT me and said i didnt look disabled in the Tesco carpark backed down when I asked her if she was the blue badge police then was embarrassed when I took my crutches out of my car
shabina09215 Jayjay1959
Posted
Hi Jayjay,
I was started in 2010 on Mtx (10 mg) one day a week, and hydroxcholroquine sulphate (2 tablets a day) and folic acid once a week. After a couple of months I had I to battle for with Rheumatologist to reduced Mtx to 5mg but did it. I was relatively fine would get some pain and fatigue. In early 2017, my mother became very ill and I experienced this a very traumatic. Not sure if the stress had an effect but after this I began experiencing flare ups. I switched hospitals and rheumatologists ( never see the same one or same specialist nurse). After first flare up give a steroid injection (can't recall name) that helped and Mtx increased to 10mg and due to flare ups has recently been increased to 25mg now. This will be monitored and if no improvement then options are:
1) injecting Mtx
2) trying other DMARDs- leflunomide or sulfasalazine. Info on both of these scary in terms of side effects. No mention of any other options or biologics.
I am often left wondering if in UK it boils down to money. My partner was diagnosed with Hep C 3 years ago and told that his liver was not seriously damaged enough to warrant being prescribed a certain drug and he might need therefore to take a less effective one with awful side effects. We managed to get him on a trail and he is totally clear. It took a lot of working together time and energy to get on the trail.
I have immense respect for health professionals but know that resources are limited and staff under enormous pressure to provide effective services and treatments.
I am doing Chi Gong and mindfulness meditation. Will start Yoga next week and look into other things such as CBT , CBD oil, anti inflammatory diet etc.
Jayjay1959 shabina09215
Posted
Try asking about retuxumab it is administed via drip day 1 takes most of the day day 2 is 2 weeks later takes half a day to administer.
There have been some good results and can last 12 months or more
Injecting mtx though means you get 100% of the dose it is injected into your thigh or tummy.
When you take Mtx in tablet form you only get about 80%
So in some cases the dose can be reduced
And it by passes your digestive system as with me it used to make me sick
I have also been told from some people that turmeric can help inflammatory deseases
Stay strong
shabina09215
Posted
Thanks Jayjay, very helpful.
I have managed to get an appointment for Monday morning with rheumatology specialist nurse.
I tried some EFT this afternoon (Emotional Freedom Technique) or tapping, through a You Tube video called tapping about inflammation. I was still in pain but this lessened and I felt much better emotionally after.
Lots of things to explore and try on this journey with RA. 😊💪🏼🤞
vanessa74034 Jayjay1959
Posted
Hi Jayjay
i was diagnosed 11 years ago, my doctor kept insisting I had a virus but I was worse so eventually he asked if I wanted to see a specialist which I did who confirmed RA. I was put on 20 mg Methotrexate which worked wonders for a couple of years, then started getting regular and more severe flare ups which eventually left me unable to do anything. I couldn't get out of bed for over a week. My rheumatologist saw me as an emergency and drained my knees then gave me
a steroid injection. She also asked if I was willing to go on a trial for toximilimab (I would have
sold my soul for anything at that point). The infusion took effect within a week, I couldn't believe
how good I felt. After the trial I continued with infusion very 4 weeks but due to costs I am now
self injecting every week. I was advised to come off methotrexate during my infusions (after trial)
due to liver function being high, once it was lower I was told to only take 10mg methotrexate and
build up slowly but to be honest I was afraid to increase dose in case it affected my liver again
and as I was coping on 10mg continued. So my routine is 10mg methotrexate on Saturday, self
inject on Monday then folic acid on Tuesday. I have been on other drugs but can't remember
them, sulphasalizine was 1 of them.
7 weeks ago my liver function was high again so been off methotrexate since. I am in 1 continuing flare up since. They are looking into why and mentioned sending me for a scan on my liver. I have also been on methotrexate injections but had a reaction to that.