Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
hey -
I've been on Methotrexate pills 15mg/1xweek for almost 6 months now. I've had good success - my hip pain/weakness/inflammation is WAY down (NO crutches in 5mo!), rashes on my hands are better, livedo reticularis on my arms are better, the "gottrons papules"/possible psoriasis on my elbows has mildly improved. The back pain and face rash/pain/swelling (possibly atypical trigerminal neuralgia; jury is still out on that one). And the back pain is still very significant. There are also still some pockets of "possible myositis" around the hip area (glutes) which correspond to some lingering pain areas around my hip/SI/upper leg. Thanks to my Hopkins doctor for taking a chance and letting me try this drug - this is the best I've felt in a while :)
When I first started on MTX, I felt like I had been beaten with a baseball bat for 1-2 days afterwards. Some fatigue - definitely needing a 2-3 hour nap Sat and Sun after taking MTX Friday night. On a scale of 1-10, I would say the pain level was around a 9 and the fatigue level was around a 7 the day after taking the pills. Perhaps a pain level of 6 on the 2nd day and only a 4 on the fatigue.
After about 6 weeks, I only feel "achy" and a little slow the day after taking the pills. "Slow" meaning both mentally and physically. I don't feel overly tired, but I tend to accidentally take naps the 2nd day after taking the pills (Sundays) - unusual for me because I generally don't nap (I have a sleeping disorder, and napping sends everything into chaos for me...).
At first, I had a lot of stomach involvement...after the 6 week point, it's turned into more like "stomach PAIN" or feeling bruised around my middle. Crazy heartburn, can't lay down for 7-8 hours after taking the pills, waves of nausea that come and go throughout the 48hr period after taking the med, and occasionally some random lower GI upset . It hasn't improved, and when we tried to go up to 20mg I started having some really intense vomiting. Vomiting that leaves me unable to walk the next day because vomiting puts a lot of pressure on my herniated disc (T7/8 with facet joint and nerve problems L and R T11 -T4).
With the pills, generally I start feeling symptoms about 30 - 60min after taking them.
My question:
- how quickly do the "icky feelings" start after taking the injection?
- for those that have used both pills and injection form, are the side effects more or less *intense* compared to the injection form?
- do the side effects last longer on the injection compared to the pill?
- Is is still advisable to have a meal around when you take the injection? Or does this not matter anymore?
I've heard that with the injection, you tend to get a more consistent dose each week and that you absorb more MTX compared to the pills, since you're skipping the stomach. I'm not sure how that translates to side effects.
I'd appreciate hearing other people's experiences on MTX pills compared to injections.
I have everything set up to take my first injection tonight or tomorrow night...just want to try and be prepared for the "post-MTX" effect ;)
Thanks,
MutantFrog
I've been on Methotrexate pills 15mg/1xweek for almost 6 months now. I've had good success - my hip pain/weakness/inflammation is WAY down (NO crutches in 5mo!), rashes on my hands are better, livedo reticularis on my arms are better, the "gottrons papules"/possible psoriasis on my elbows has mildly improved. The back pain and face rash/pain/swelling (possibly atypical trigerminal neuralgia; jury is still out on that one). And the back pain is still very significant. There are also still some pockets of "possible myositis" around the hip area (glutes) which correspond to some lingering pain areas around my hip/SI/upper leg. Thanks to my Hopkins doctor for taking a chance and letting me try this drug - this is the best I've felt in a while :)
When I first started on MTX, I felt like I had been beaten with a baseball bat for 1-2 days afterwards. Some fatigue - definitely needing a 2-3 hour nap Sat and Sun after taking MTX Friday night. On a scale of 1-10, I would say the pain level was around a 9 and the fatigue level was around a 7 the day after taking the pills. Perhaps a pain level of 6 on the 2nd day and only a 4 on the fatigue.
After about 6 weeks, I only feel "achy" and a little slow the day after taking the pills. "Slow" meaning both mentally and physically. I don't feel overly tired, but I tend to accidentally take naps the 2nd day after taking the pills (Sundays) - unusual for me because I generally don't nap (I have a sleeping disorder, and napping sends everything into chaos for me...).
At first, I had a lot of stomach involvement...after the 6 week point, it's turned into more like "stomach PAIN" or feeling bruised around my middle. Crazy heartburn, can't lay down for 7-8 hours after taking the pills, waves of nausea that come and go throughout the 48hr period after taking the med, and occasionally some random lower GI upset . It hasn't improved, and when we tried to go up to 20mg I started having some really intense vomiting. Vomiting that leaves me unable to walk the next day because vomiting puts a lot of pressure on my herniated disc (T7/8 with facet joint and nerve problems L and R T11 -T4).
With the pills, generally I start feeling symptoms about 30 - 60min after taking them.
My question:
- how quickly do the "icky feelings" start after taking the injection?
- for those that have used both pills and injection form, are the side effects more or less *intense* compared to the injection form?
- do the side effects last longer on the injection compared to the pill?
- Is is still advisable to have a meal around when you take the injection? Or does this not matter anymore?
I've heard that with the injection, you tend to get a more consistent dose each week and that you absorb more MTX compared to the pills, since you're skipping the stomach. I'm not sure how that translates to side effects.
I'd appreciate hearing other people's experiences on MTX pills compared to injections.
I have everything set up to take my first injection tonight or tomorrow night...just want to try and be prepared for the "post-MTX" effect ;)
Thanks,
MutantFrog
Regarding sleep, when I first started on the pills, I would need that 2-3 hour nap Sat AND Sun, but that was on top of a solid 8-10 hours sleep Fri night and Sat night.
That's pretty unusual for me - I tend to be able to function on 5.5-6 hours of sleep (no naps).
After the first 6 weeks, I still found I needed more like 8-9 hours Fri night and Sat night (and sometimes even Sun night) but my awake time is much less foggy and I don't feel like I HAVE to nap. I've had a few adventurous weekends where I hardly got any sleep after a MTX dose...it was very, very hard - but I made it. During the first 6 weeks or so on the 15mg pills that would not have been physically possible.
- I still have a dull day the day after my injection. I don't plan much that day and am surprised if I am able to do much. I don't find I need a nap anymore but I love naps so I often take one anyway.
- side effects were significantly less for me on the injection. Only 1 day for the most part. I usually feed better by dinner time. The injection is more absorbed by the body and it bypasses the attack on your stomach.
- side effect are shorter for me. The pills were 3-5 day where the injection is 1 day.
- I found not having an empty stomach before my injection is good. I used to eat a big plate of hash browns before the injection. It helps having something absorb the medications. I no longer feel I need the hash browns. But I do make sure to have a good hearty meal and maybe a little snack before I do my injection and go to bed. I try to be asleep within 30 minutes of the shot and find I sleep off most the affects.
Moving to the injection was a life saver for me. Let me know if I can help further. I've been on MTX since 2009. I've been doing the shot for several years.
I do think the hash brown method that Lexis uses does help to feel better too.
I hope you will quickly feel better. Keep us posted. Best Wishes.
I've done the injections once now.
GI side effects in some ways were better, in some ways - worse. The nausea the day after was a little more intense, and it lingered. However, I didn't throw up or have any similar issues. So I can deal with just feeling a little "touchy" for a day or two. It reminded me of a hangover, actually. Definitely no appetite the next day.
Fatigue was noticeable 2-3 days after the injection. That is more than when I take the pills. HOWEVER, I think that's because I'm absorbing more of the medication via injection vs the pills. In order to stomach the pills, I found the best thing to do was have something starchy beforehand, sip ginger ale and maybe a saltine or two with the first group of pills, a small amount of ice cream maybe 2-3 hours later, then take the remainder of the pills ~1.5-2 hours after that. I know less medication is absorbed that way, but it was the only way I could keep my stomach in check when taking the pills.
I did see something odd after I took the injection, though. When I took the pills the first few times, my hands got bright red, hot, and a little swollen. It wasn't really painful, just weird, and it always went away within an hour or so. After the injection, I napped about 2 hours and woke up with my hands like that - but my hands were also very weak. I almost couldn't hold a pencil, open a door, etc. THAT freaked me out a bit. But I was so tired - I got some water down and then crashed for a few more hours. When I woke up it was gone. I have absolutely no idea what caused it/why it happened. I don't know if anyone else has experienced anything similar after taking MTX.
I'm curious to see what will happen for round 2. It's so nice not to have to spend half a day babying my stomach to get the pills down! I really liked that I could do the injection, read a little bit before crashing for the night and then just wake up and go the next day. I feel like I got 1/2 - 2/3 of a day back :)