My RA: I take 2.5 mg , 8 pills every Saturday. By 3pm i... - NRAS

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My RA

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I take 2.5 mg , 8 pills every Saturday. By 3pm i'm feeling brain fog. I take one pill every 2 hours. From 6am - 8pm. Sundays I feel tired and sleepy. I've hard RA for almost a year. At first the pain was so severe it hurt my shoulders to touch the bed. I didn't know what was wrong. Knuckles, hands were swollen. Pain throughout my body. Very scary. Prednisone helped until I could see a Rheumatologist. Methotrexate has been a miracle drug. I know longer require help buttoning or zipping my clothes. My RA started at the top of the chart and almost overnight. RA went to my father's lungs and killed him.

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hope-always316 profile image
hope-always316

I was on 20mg of mtx for about 10 months. It helped enormously although I noticed a lot of hair loss (despite taking 5mg Folic Acid every day except mtx day).

I have reduced to 15mg (6 pills) and the hair loss has stopped and the brain fog and nausea much less. I see my consultant this week and want to reduce further if I can.

It has thankfully been effective for me although the side effects have been tough, particularly the fatigue.

I take my 6 pills all at once in the evening so that by the time the worst of the fog hits, I'm asleep. The next morning I can feel a bit 'hungover' and 'off' but not always, since I was able to reduce to 15mg.

Simba1992 profile image
Simba1992 in reply tohope-always316

Forgot to ask, was your father on RA meds? An important reality being also the fact that RA meds can cause serious problems and that it is important to to keep the ill effects of the disease and the meds appart. Very sorry about your father and hope you will find a good solution.

in reply toSimba1992

Yes. He was.

Simba1992 profile image
Simba1992

Fatigue and brain fog are reasons why people stop with mtx. I suppose it is always a question of weighing benefits and side effects:(

nomoreheels profile image
nomoreheels

Hiya Arlene_ & welcome. I'm pleased MTX is working for you. I wonder is your Rheumy aware of your symptoms & has he ever discussed trying a change to injections? It would be far easier having the one injection weekly than your current regime & maybe your symptoms would ease somewhat. It's bioavailability is better so sometimes you can drop down a dose. I had to do this about 7 years ago, go down from 20mg to 17.5mg when my liver objected & it's been successful, I've remained on it 8 years now. The only down side is because I can't increase the dose I need another DMARD too, I've tried so it's been proven, but hey ho, it keeps me out of trouble! I also take folic acid 6 days & just have less appetite & I'm a little more tired the following day. Might be worth asking about them if your Rheumy's not broached the subject. They're easy enough, just an autoinject pen.

I'm so sorry you lost your father to the disease, it must make you more aware of how important it is to be well controlled. We hear less of losing people nowadays as our Rheumy's have more options available to treat but that doesn't help your father now unfortunately. It serves as a reminder that it's not just a disease of the joints.

I hope you find it helpful being here. 😊

AgedCrone profile image
AgedCrone

Have you tried taking all 8 pills after dinner? I found that worked well...if I felt sick I was asleep,& by the time I woke up I felt normal!

Dragging out pills all day means you are probably thinking about them all day! Not a good idea...take 'em & forget about them!

in reply toAgedCrone

Really? That's not a bad idea.

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