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 12/04/2011

I think that I over analyze this illness. At times I am sure that I understand my treatment plan and then I start to think that maybe I am not so sure. First of all if my Prednisone is decreased or even eliminated, what is going to keep my PM in remission or are they even related to each other and will I still be able to walk?

Or is the PM improving and the Prednisone not even related? My neurologist lowered my Prednisone by 5mgs per day for 3 weeks and now 3 weeks later I am suppose to lower it by another 5 mgs per day. He must be kidding. With the pain that I am experiencing, I am not lowering my dosage until they get to the bottom of my pain. I have to be able to work each day and do the few other things that I have going on in my life and pain gets in the way.

My daughter "ordered" me to rest today. I was telling her that I had some things that I needed to do, even though I had already decided not to go to church because I didn't want to get dressed and she told me point blank that there wasn't anything that I had to do today and that I try to do too much and I had to smile and agree with her. I am use to taking care of everything myself and most things can truly wait. PM is requiring me to retrain my mind.

Now if I can just figure out this mystery regarding Prednisone vs PM. I guess it is because I am not taking a medication for the PM. The Cellcept is for my immune system, so what heals PM?

nanny1611 12/04/2011

Brenda,
I'm not a doctor, but here's what my neuro explained to me. He said that with PM, the muscles get so inflammed that they can't receive messages from the brains and nerves (thus we gradually are paralyzed). While the muscles are no longer responding, they begin to atrophy. He told me that the prednisone is a very strong anti-inflammatory. The purpose is to reduce inflammation so the muscles are once again capable of receiving signals to move. As the inflammation subsides, we conceivably should be able to reduce the dosage. Prednisone also suppresses the immune system. Hope this helps.

BTW, I am off all prednisone since May and holding my own. I'll never be what I was before PM, but I'm not as bad as I was when diagnosed. Also, my one doctor recommended a supplement called Lauricidin for my chronic problem with Epstein Barr Virus. She felt that the EBV could have triggered the PM. The best part of this supplement was that it greatly reduced my muscle and joint pain--a very welcomed side benefit. Best wishes to you.

brendacaytonwhite 12/04/2011

Nanny1611, this helps a lot. I just couldn't get my mind around how this was going to work. I am going to look into Lauricidin and discuss it with my doctor.

nanny1611 12/04/2011

You can read about Lauricidin at Lauricidin.com. You can purchase it from that site or from Amazon.com. If you choose to try it, my doctor told me to start taking it slowly in order to avoid the Herxheimer effect (where you get worse before you get better). The Lauricidin comes in small pellet-like size (look like tiny flying saucers), and it lasts a long time. She told me to start by taking 3 pellets with each meal (4 times per day). Then she said that I should increase it by 1 pellet per meal, once or twice a week, until I got up to 1-and-a-half scoops (the scoop is included and is about a teaspoon). I had never heard about this supplement until my doctor recommended it. When her "vampire" nurse saw the brochure in my hand, she told me that she knew 3 women from her church who had excellent results from Lauricidin. The website says that you reach optimal results at about 3-6 months of usage. I started feeling results after 3 weeks, and continued to see improvement for about 6 months. If I forget to take it, my body lets me know. I really like this doctor, as she thinks outside the box and isn't afraid to try something different. She knows that I like natural remedies if possible, and she's willing to work with me. Yet she's not afraid to write me a prescription (and tell me to take it) if natural remedies aren't appropriate.

lexisgirl 12/04/2011

As I tapered Prednisone, I was told to expect more pain. My Neurologist said most people don't get off it completely...especially without a back up medication. I take Methotrexate as well. I know I want off Prednisone so bad but I also know that is at the risk my health and being able to do what I want to do. Only you can decide what that balance is. I've finally come to terms with the fact I will always be on Prednisone. My dose is now low enough that the side effects are minimal. I still can't get the weight off but I guess I'll just have to come to terms with that.

I would talk to your doctor about your concerns. I'm sure he has a plan.

lexisgirl 12/04/2011

Oh and I don't think you can heal PM. I think you want to reduce the inflammation and then use the back up drugs to keep our nerves calm and doing the right thing so we don't get imflammation again. That manages the disease but I don't know that we heal//cure ever.

deleted_user 12/05/2011

Well I am happy your daughter is taking care of you! What a blessing!

This is a rare disease and there really isn't a treatment protocol for everyone as each one is unique. If your pred is reduced they introduce another drug to take over for the pred - I am on cellcept. It is a constant gauging of blood work and how you feel to get the right balance.

With the pain you are experiencing - you may be tapering the pred too fast. What I did was have my blood work checked while tapering to see if it was a flare or if it was steroid withdrawal,

I don't think we get healed - it varies some go into remission with meds or without meds.

I hope you see your doctor soon - take care
Love hugs and prayers-:)

brendacaytonwhite 12/06/2011

Just left the lab and another round of blood work. I had the same tech that drew my blood back in August and she remembered my rolling, small veins and got me on the first try. She even noted their paperwork with which needles to use when I come back just in case she isn't there. Now that is a caring professional. Yesterday I had a echocardiogram and the younglady there was so upbeat and polite. As a person who talks with many people over the phone each day and very seldom gets out these two people were such a joy to encounter. I always try to have a smile and uplifting word for everyone that I encounter, especially now. My local grocery store, Publix has the kindness people working for them and they are always willing to assist no matter what and I have overheard others say that they will only shop there because of the type of employees that they have. I know that this is going to be a good day. This evening I will be having the MRIs of my brain and back. Hopefully I will have answers soon. Have a great day everyone.

deleted_user 12/08/2011

Brenda, i am having a week like yours too. Way too many tests in a week, but then i get a few weeks off. Today it is endoscopy, tomorrow Echocardiogram. I hope my health care professionals are as great as yours were. What a blessing.

I hope they get to the bottom of this pain cycle for you and help to find a plan of relief. So good to hear from you more often, i worry and to see a post, helps.

Good luck, SHawna

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