Hi tlasher. This needs checking out. It may not be connected but it's worth checking these things out. Does the headache get better as the day goes on, maybe you could take it at night and sleep through the effects. I am glad your strength is getting better and the rash. I do hope you can sort this out. Best wishes. Autumm

Hi tlasher, You should not be having bad headaches with MTX. My rheumy switched me to Cellcept when I started having bad feelings in my head from MTX. Talk with your rheumy about the headaches. Maybe lowering to 17.5 for a while would be more tolerable?

I used to break up my MTX dosage by taking 4 pills in the morning with breakfast and four pills in the evening with dinner. Breaking up the dosage over the day helped me tolerate most of the bad feelings. I would also take Leucovorin which is a high dose folic acid 12 hours after the MTX.

I hope the headaches go away. I hope things will level out for you. Best Wishes.

Thank you Autumm and trpt1 for your responses. Autumm the headache is kind of dull achy and gets worse throughout the day. Maybe stress and fatigue related since it is better in the morning? Thankfully it is much better today then yesterday.
trpt1 I will try splitting up my next dose. If that doesn't help I will try going down to 17.5 Hopefully I can stay on the mtx as it seems to be helping. I'm so thankful for this website. Your support on here is so helpful.

Hi flasher - funny you should say this as I have been on MTX for a couple of years now and have had to increase the other day from 8 tablets to 9 tablets a week. I have also had bad headaches every day for the past week which last all day plus sicky feeling all day which usually goes away on the 2nd day after taking MTX but on this does it is still here after taking my dose on Monday.

Hi tlasher & Amberhere, Make sure you are taking the folic acid the next day after the MTX. The Methotrexate takes away your B vitamins and it is important to protect the brain from the MTX effects. Some people take a daily 1mg folic acid, and some take a high dose 5mg folic acid (Leucovorin) twelve hours after the MTX.

Lexis has a terrific hash brown receipe that really helps to feel better. I really found the potatoes helped with the blah feelings. I would take the MTX on Friday so I could use the weekend to rest up from the feelings.

DMARDs require watching blood work and how you feel to adjust dosage amounts. It is also common to eventually change DMARDs with DM/PM. You might consider reading up on Cellcept and Imuran. I take daily Cellcept and it has no bad feelings. I had to start with a low dose 500mg of Cellcept for a couple weeks then build up to a higher dose over time. When my liver enzymes elevated then My rheumy had me drop down on the dosage amount. These DMARDs require slow moving up or down to find the right dosage. Any bad feelings often means check liver scores and blood work and drop the dosage if necessary.

Never a dull moment! Best Wishes.

Thank you for your comments trpt1 - what a minefield this all is!! Will look into possibly changing DMARD, I have been fairly OK on the MTX but have the red hand problem at the moment which isn't going away (gottrons papules) this is why my Rheumy put up the dose though I can't see it actually disappearing. Best wishes Amber

i used to get headache with MTX as well. The hash browns the night you take your pills helps. Make sure you drink lots of water too. I also find Excedrine helps more than Motrin. As you get used to the dose, it should be better. I had to switch to injections to handle the increase and side effects. It helped me a ton. I now have a dull "flu like" feeling the next day but it is nothing like it was with the pills. Before you decrease, talk to your doctor and see if you can figure out how to combat the side effects. We do usually need a higher dose to really get the benefits. The standard dose for us is around 25 mg.

Hi Amberhere - Hope your head ache is getting better. I'm still dull achy but a little better. The increase in mtx has helped my rash overall but I have had no improvement to the redness on my hands. I'm very thankful that the itching on the other rash sites has stopped.

trpt1 - I currently take 1mg folic acid daily, and a b complex supplement. Were you on mtx before you switched to cellcept? My liver enzymes were elevated when I had muscle weakness but as I got stronger my liver enzymes returned to normal.

Hi tlasher, Yes, I was on MTX at the beginning of my DM, and I took MTX for three years. I found MTX to be beneficial, but I did not like the bad feelings. I switched to Cellcept after having bad feelings in my head. My rheumy gave me the choice of Imuran or Cellcept. I read up on both meds and talked to a lot of DM patients. I decided to switch to daily Cellcept. I found the Cellcept to help well with my DM.

Elevated liver enzymes happen with DM flares. Taking the correct dosage amount of medication makes elevated liver enzymes go back to normal. Our DMARDs address the liver. Taking too high a medication dosage might also elevate enzymes. The rheumy runs blood work to check liver and kidneys.

I take 6 pills of MTX weekly. I split the dose of the MTX. 3 in the morning and 3 in the afternoon.
I am taking the MTX on Friday, on Sunday, Tuesday and Thursday I am taking 5mg of folic acid

Sorry for such a late addition - I'm new to this message board – but I saw this post and wanted to reply. Some background: I have had DM since early 2014, and am on 15mg/week MTX and 1mg/day of Prednisone (plus folic acid, vitamin D, calcium, etc.). I was getting headaches from MTX to the point of not being able to work, had used up all my sick time and was into negative numbers (thank goodness for understanding managers). I tried migraine meds (sumatriptan), acetaminophen, and even hydrocodone, but they didn’t help at all. Finally, my PCP prescribed amitriptyline, which is mainly an antidepressant, but also helps with pain management and sleep problems. I take 10mg every night at bedtime and within a few days, my headaches were pretty much gone. Occasionally (every few weeks) I’ll still get them on Wed. night/Thurs. morning (I take the MTX on Wed.) but that’s nowhere near what was happening before and can usually be managed with acetaminiphen. As a bonus, the aches in my legs from the DM practically disappeared, and I started sleeping more than 5 hours per night. It did make me dizzy for the first couple of days, but I’ve had no other side effects that I can tell. Of course, treatment is different for everyone, but it does work for me, and I haven’t seen it suggested yet, so I thought I’d share my story. Good Luck!

Hi NeeCD. Thank you for the post. Very helpful. Best wishes. Autumm