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.

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brendacaytonwhite 04/07/2013

I am as a little child today. I start my IVIG treatment tomorrow and wish that I could sleep until 8am when it starts. The Opana ER that I have been taking for the last few months no longer works at "all". How does a class 2 narcotic stop working, or is my pain so severe that no medication can break through it? I was taking it every 12 hours, but within 10 hours needed another and now my pain specialist wants me to take a 10 mg opana tablet intermittently. I was informed by the manufacturer that it has been on back order for over a year and then today was told by the only pharmacy in my county that they didn't even have the opana er in stock and are planning to stop carrying it soon, because of drug addicts and unethical doctors. What will that do for me and others in my area who seriously need this medication. I am praying that the IVIG will allow me to no longer need the opana and maybe not need a pain medication at all. So if I can fall asleep until time to start the infusion, I am game,

nanny1611 04/07/2013

Brenda, I will pray with you that the IVIg will help you and that you won't need the pain meds anymore. Best wishes, my friend.

sewsewsonia 04/07/2013

brenda, thank you for your kind words, i wish you well and hope that the ivig works for you. my thoughts and prayers are with you. sonia

deleted_user 04/07/2013

Praying the IVIG will help you and alleviate the pain for you. Let us know how it goes. -:)

autumm 04/08/2013

Thinking of you. And wishing you well. Autumm

deleted_user 04/08/2013

Sending you all the best Brenda. IVIG has been my liquid gold, and is making me so much stronger... I was really nervous the first treatment but did well with lots of hydration and a slow infusion rate. I will wish the same for you. I do it once a month and it takes a few days afterwards to recover and feel great!!! Hope you have a good response. First treatment was the hardest. With aches and pains thru the night but then by the second one i did much better.
all the best, Shawna

brendacaytonwhite 04/10/2013

Thank you all for your prayers. I feel them. Shawna another lady in my infusion group also called it liquid gold and for the price it is. So far I haven't had a headache which the others said they had. I have been drinking a lot of liquids, especially water and taking the meds that the doctor ordered for me. Today was the third day and it was the longest, The nurse set me up with a very slow drip. I am fine with it as my time is my own and I am staying at a hotel nearby. The hotel shuttle takes me and picks me up, I have been eating a very large breakfast each morning and then a small snack mid day. I have noticed my hands and fingers aren't as numb and aren't tingling as much. My knees are very painful, moreso than recently, but it may be because I sat for almost 8 hours today. I got up twice I think for the restroom. I am learning so much from the others who are getting the IVIG treatment and the one guy who has PM has been getting IVIGs for a few years and he said that they do work. I will keep you all informed each day. God is so good. 100% insurance coverage, approval for indefinite treatments for a year. This is a Blessing and I thank you Lord for your grace. Amen.

nanny1611 04/10/2013

So glad to read your positive comments regarding your treatment, Brenda. Praise the Lord! I trust that each treatment will bring you closer to good health. I am continuing to pray for you.

lexisgirl 04/10/2013

Okay y'all are making me feel jealous and like I am missing out. I seem to be maintaining on the Methotrexate but I struggle every day with some movements and stairs are still my undoing.

Keep us updated Brenda. I know the fear of not being able to get Methotrexate. I finally found a small pharmacy that can get it without any issue. I had to call probably 15 pharmacies and finally one recommended this little one. So hopefully the IVIg will help with the pain but if not, check other pharmacies for what you need.

As far as it not working, I've heard narcotics do that. You develop a "dependency" on it and you need more and more for it to work. That could be why the doctor is asking you to cut back. I would ask him what you should take instead. Also, narcotics will constipate you seriously. I'm sure that is why you are having problems (carried over from the other thread).

Good luck with your next infusion.

deleted_user 04/11/2013

Brenda, so glad the first treatment is nearly over. The extra fluids build up in the body for a few days and that may be why your knees are hurting, not just the sitting. I suggest walking each treatment a time or two as far as you can comfortably go. Clots are another side effect and so keeping your blood moving is a good thing. Keep drinking and it will work itself out in a day or two after treatment. I am on treatment 7 and just had a dull headache at night the past 3 nights but nothing bad. Just bothersome. Tylenol was enough.
May it work well for you and you get back to a reasonable activity level. Sending you strength and patience,
shawna

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