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.
The past couple of weeks I have noticed more pain in my knees. So bad it keeps me awake at night. This is new. I have had pain in my upper thighs but not my knees. I have also noticed that I occasionally get really blue looking fingertips. Sometimes its after being outside (even if its just for a short period of time) but other times it doesnt seem to be triggered by anything in particular. We went to my kids school tonight for a school program and once inside and seated, I told my husband to look at my fingertips and nails. He immediately noticed they were blue.
We were trying to ween off the Prednisone (again) but I had to call my doctor on Wednesday because I was just feeling awful. More pain, more fatigued etc. She said it didnt sound like I was ready so we talked about what doses seemed to work for me recently. I told her 10 was good. 5 was ok. She told me to try 5 mg everyday again for a week and call back and let her know how I was. I know she is trying to keep me on the lowest effective dose possible and I understand why but I just want to feel better. I do feel somewhat better on the 5 mg everyday and maybe I just need to give it a few more days but this knee pain isnt really getting better yet. I also still do 15 mg of injectable methotrexate each week. Even though my hair continues to fall out. My rheumy did give me the option of switching to Imuran but that doesnt sound like such a great choice either. She also gave me the option to stop the MTX since my recent CK's have been ok but judging from how I feel, I dont think thats a good idea.
I'm just so confused. As usual. Every choice or decision comes with a catch 22. Ugh...
We were trying to ween off the Prednisone (again) but I had to call my doctor on Wednesday because I was just feeling awful. More pain, more fatigued etc. She said it didnt sound like I was ready so we talked about what doses seemed to work for me recently. I told her 10 was good. 5 was ok. She told me to try 5 mg everyday again for a week and call back and let her know how I was. I know she is trying to keep me on the lowest effective dose possible and I understand why but I just want to feel better. I do feel somewhat better on the 5 mg everyday and maybe I just need to give it a few more days but this knee pain isnt really getting better yet. I also still do 15 mg of injectable methotrexate each week. Even though my hair continues to fall out. My rheumy did give me the option of switching to Imuran but that doesnt sound like such a great choice either. She also gave me the option to stop the MTX since my recent CK's have been ok but judging from how I feel, I dont think thats a good idea.
I'm just so confused. As usual. Every choice or decision comes with a catch 22. Ugh...
Only you know how your body feels and how you are performing. How does your bloodwork look? What is your CK? My Neuro makes me hold at a certainly Prednisone level or 3 months of normal CKs before I am allowed to taper...adn then it only happens if I am feeling okay and staying active.
Hang in there and tell your doctor if you aren't comfortable with the direction provided.
It helps me to remember it is a risk versus benefit decision with each choice. The benefit of being able to do things for me outweighs the risks. I am incapacitated off the meds, so it is not a choice i get to make, as i get better then i get to make choices of which i decrease first, or how long i say on them, but i try to not worry too much about the risks when i choose to take it or not.
I am sorry you are having pain. I do get Knee pain when my DM is acting up. mine feels like it is under the knee caps. Driving is impossible with it, so again, to live my life i need the meds. Good luck, Shawna
Hugs
-;)
I also take four wheatgrass ice cubes a day, and they way that helps with skin and hair.
I tapered my prednisone too, and things started spiraling out of control. Now we've settled on 8 mg a day for a while. That's the only way I can be productive. At least it feels like I have my life back when I'm on the meds.
I do take 1 mg of Folic Acid a day and also a Leucovorin 8 hrs after my methotrexate injection. Doesnt seem to be helping with the hair loss. My dermatologist doesnt even think my hair loss is from the MTX. He thinks its from the DM itself. I find it coincidental that my hair loss started 3 weeks after I started the MTX though. He said that was too soon for hair loss with MTX. Who knows...
I agree that it is definitely a risk vs. benefit issue with these meds. And I know 10 mg of Prednisone isnt an especially high dose either. I would prefer to stay on the MTX over the Imuran (if I can) just because I know I tolerate it well but then again, it would be nice to not have all my hair fall out. But is the MTX causing my hair to fall out or is it something else? What came first? The chicken or the egg? :)