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 was initially diagnosed with DM a few years ago. I bounced around between a lot of doctors and took Plaquenil (+ crazy UV avoidance) to manage skin symptoms. At the same time, I had some joint issue crop up and there's been a big question about whether they were related to the DM, another AI disease, or just mechanical. To further muddy the waters, I have some kind of atypical nerve issue on my left cheek that everyone says must be "lupus/DM related" yet responds only to Lyrica. I have seen literally 12 different specialists trying to figure out what to do about the situation. In the meantime, I do various steroid injections/nerve ablation procedures/PT visits in conjunction with narcotics and Lyrica to manage day to day function.
Finally, I saw someone at Johns Hopkins and we decided to try Methotrexate. I had my first round of it last Friday. Now, I had several episodes of low fever that week (pretty typical for me - "fever of unknown origin" off and on for last 4 years) and my rash was a little crazy. By low fever I mean 99 - 100.5. Never fevered for more than ~3 hours, but this is happening when I am already on narcotics w/tylenol, Celebrex 100mg 2x day and 4 steroid shots within the last 2 months (2 for hip, 2 thoracic epidurals).
When I took the Methotrexate on Friday, I took it as 3 pills around 7:30pm and 3 pills around 11:00pm. I nibbled a few saltines in between, and had some gingerale. By about 11:30pm I got SEVERELY chilled. I noticed my temp hit 102.8, and my fingers/toes/face got extremely white. Like a raynaulds episode or something - it felt like they were literally emanating icy air. Very unusual for me (I do sometimes get raynauld episodes, but it will be like 1 finger or 1 toe, and an hour later it's normal).
By the next morning, my fever had returned to the 'normal' range, my coloring was more normal and I just felt really achy (I'm assuming from being chilled). I had a lot of fatigue Sat afternoon - evening but by Sunday I woke up feeling just fine. I experienced some fatigue later on Sunday, but it wasn't as intense as Saturday and I could compensate with caffeine (kind of like waves of fatigue rolling over me at random times).
I contacted the doctor, and we decided to go ahead and keep trying the Methotrexate.
My question -- has anyone else had a weird reaction like this?? I'm not familiar with this med at all, and I do have a history of weird/sensitive reactions to new things. Just wondering if those with more experience on this drug have observed anything similar. If so, does it go away? Will the fatigue become more manageable over time? (I did have some stomach *pain* but no real nausea or other GI events)
Thanks -
MF
I was initially diagnosed with DM a few years ago. I bounced around between a lot of doctors and took Plaquenil (+ crazy UV avoidance) to manage skin symptoms. At the same time, I had some joint issue crop up and there's been a big question about whether they were related to the DM, another AI disease, or just mechanical. To further muddy the waters, I have some kind of atypical nerve issue on my left cheek that everyone says must be "lupus/DM related" yet responds only to Lyrica. I have seen literally 12 different specialists trying to figure out what to do about the situation. In the meantime, I do various steroid injections/nerve ablation procedures/PT visits in conjunction with narcotics and Lyrica to manage day to day function.
Finally, I saw someone at Johns Hopkins and we decided to try Methotrexate. I had my first round of it last Friday. Now, I had several episodes of low fever that week (pretty typical for me - "fever of unknown origin" off and on for last 4 years) and my rash was a little crazy. By low fever I mean 99 - 100.5. Never fevered for more than ~3 hours, but this is happening when I am already on narcotics w/tylenol, Celebrex 100mg 2x day and 4 steroid shots within the last 2 months (2 for hip, 2 thoracic epidurals).
When I took the Methotrexate on Friday, I took it as 3 pills around 7:30pm and 3 pills around 11:00pm. I nibbled a few saltines in between, and had some gingerale. By about 11:30pm I got SEVERELY chilled. I noticed my temp hit 102.8, and my fingers/toes/face got extremely white. Like a raynaulds episode or something - it felt like they were literally emanating icy air. Very unusual for me (I do sometimes get raynauld episodes, but it will be like 1 finger or 1 toe, and an hour later it's normal).
By the next morning, my fever had returned to the 'normal' range, my coloring was more normal and I just felt really achy (I'm assuming from being chilled). I had a lot of fatigue Sat afternoon - evening but by Sunday I woke up feeling just fine. I experienced some fatigue later on Sunday, but it wasn't as intense as Saturday and I could compensate with caffeine (kind of like waves of fatigue rolling over me at random times).
I contacted the doctor, and we decided to go ahead and keep trying the Methotrexate.
My question -- has anyone else had a weird reaction like this?? I'm not familiar with this med at all, and I do have a history of weird/sensitive reactions to new things. Just wondering if those with more experience on this drug have observed anything similar. If so, does it go away? Will the fatigue become more manageable over time? (I did have some stomach *pain* but no real nausea or other GI events)
Thanks -
MF
I am not a doctor. I can tell you that I have similar symptoms to yours. When my blood pressure and blood sugar takes a dive low or spikes high, then I have the symptoms that you describe above. I have DM with glomerulonephritis which is chronic kidney disease. I am also watching to keep my weight & diet good to avoid type 2 diabetes. I am not sure if type 2 diabetes is just something that all of us should expect or if it happens to some of us? When you get very tired then definitely check blood pressure & sugars. I drink Gatoraid which has electrolytes, sodium, and sugar. The Gatoraid does a nice job of supporting my kidneys during low BP and low sugars. Naturally, you will want to discuss with your doctor which drink or foods would be most appropriate for you. Fatigue could be a result of dehydration or anemia. If it is a kidney issue, then you WILL notice that no amount of caffeine fixes that level of sleepiness.
I take Cellcept. If you are concerned with Lupus Nephritis or possible pre-diabetes, then I would ask a lot of questions about MTX.
Nerve issues can be part of DM. DM does effect the muscles in the spine too. I am getting a check on my cervical spine & lumbar spine this week for nerve issues too. I see a good neurologist.
Well, I hope you get to the bottom of all your symptoms. I hope this helps. Best Wishes. Keep us posted.
Definitely knew about the eye issue from Plaquenil. I get my yearly eye exam as well as a visual field test every year. I actually stopped taking the Plaquenil about 8 weeks ago, since I had hit the 5 year mark on that med and I'm aware that the risk of blindness goes way up after that point.
I too have blood sugar problems - I have PCOS/pituitary issues. I haven't actually become diabetic, but I do take metformin. I hadn't even considered that the MTX might mess with my blood sugar or insulin. Thank you so much for bringing up that point! LOL I actually bought a thing of Poweraid last week in preparation for today's dose, thinking that it might help with the fever/chills/white extremities - or at least speed up the recovery on Saturday. I hadn't considered the blood sugar/insulin aspect, but the Poweraid should help with that, too!
Thank you also for talking about the kidney issue. I do take Lyrica (a LOT of Lyrica) and it's filtered through the kidneys - thus why it tends to cause puffy hands/feet/water retention. My kidneys have always seemed OK, but I have 2 family members who have kidney disease so I understand the risk. Thank you for letting me know about the impact of caffeine on fatigue - I will keep my kidneys in mind of if I can't manage the fatigue going forward.
Does the Cellcept help with joint involvement? I was told it was only helpful for the skin, but I don't know much about the drug.
I also didn't know about DM and nerve involvement. I mean....I'm aware of how it impacts muscles, but I didn't think it could cause like an inflamed nerve such as trigeminal neuralgia. I know that you're not a doctor, but still - it's encouraging to think that there might really be a chance that these things are related (and thus treatable with MTX or other DMARD) as opposed to having just such a long freakin' list of things wrong with me.
Definitely your info helped. Thanks again trpt1!
-- MF
I'm aware of low grade fevers being a manifestation of AI...I guess I just wasn't expecting to see an AI fever spike on MTX, even 1 dose. Maybe that is just a silly expectation, I don't know. I am still learning about MTX.
Thanks so much for that link - I read through the patient feedback. I didn't see the reaction I described (fever spike and/or raynaulds-like attack) but I can see there's a wide range of reactions to this drug. I will make sure to keep good records (exactly what I eat, when I take it, temp, etc) and see what happens in the next few doses. Who knows - maybe what I experienced in fact wasn't related to the MTX.
And thanks for sharing about your experience with Actonel. Knowing that at least other drugs can cause this kind of thing is reassuring. The only time I'd seen white digits like this was when my friend (who has primary Raynauld's) has a bad attack. While I get a toe or a finger doing that...maybe 5x a year?...I'd never seen my body do that to such an extreme degree. It scared me a little bit. Especially on top of taking a new med for the first time - a med with lots of "this is dangerous, it kills people" type of language all over the info pamphlet. :(
I really appreciate the feedback --
MF
I did do a little bit of reading on Raynaulds, specifically vasoconstricting meds that can bring on a raynaulds attack. I didn't see MTX listed, but I saw several sources include "certain chemo meds" on their lists of vasoconstricting meds.
Even after the...attack (?)...on Friday night went away, I got it again in my toes on Sunday evening, Monday afternoon and Tuesday morning this week. That's like a world record for me. Both in frequency and the amount of affected tissue. It's something I'll keep an eye on going forward, and try to keep good records (notes, photo record, etc).
If anyone knows for a fact - or a source where it is listed - the MTX can have a vasoconstricting effect, please let me know. I'd be interested in reading it.
Thanks,
MF
https://healthunlocked.com/raynauds-uk/posts/932129/raynauds-with-other-auto-immune-issues
http://www.everydayhealth.com/rheumatoid-arthritis/the-facts-on-methotrexate-for-ra-treatment-4385.aspx (Be sure to read the third paragraph under "Dealing with methotrexate side effects.")
http://www.webmd.com/drugs/2/drug-3441/methotrexate-anti-rheumatic-oral/details/list-sideeffects (Look at the list of "infrequent" side effects.)
http://www.consumermedsafety.org/tools-and-resources/medication-safety-tools-and-resources/high-alert-medications/methotrexate-rheumatrex-trexal (Read #10)
http://www.ucsfhealth.org/education/methotrexate/ (Be sure to read the list under "Call your doctor if you experience any of the follow", along with the paragraph underneath.