Myositis

[Janet]

I have Scleroderma.  I have treated it for 14 years.  The first 7 years were the worst.  After having it for 3 years, I developed myositis.  The treatment was prednisone for 8 months with two courses of IV antibiotics.  I have not been bothered with this until last year while I was recovering from a cold.  The muscle pain lasted about 3 days as I became fully recovered from my cold.  Then last week the same thing happened.  I have been off antibiotic therapy for about 4 years.  I wondered if anyone knew whether the recent muscle inflammation was an indication that I needed to go back on antibiotics?  Does anyone have experience with myositis? 

[carries]

Hi! My cousin has Mytosis and she has found success with IVIG.

[Maz]

[user=2210]Janet[/user] wrote:

 Does anyone have experience with myositis? 

Hi Janet,

Glad you joined us here and so sorry to hear you're back in pain. Are you saying you were on AP for scleroderma and came off it when you reached remission 4 years ago?

I think you're wise to consider possibly going back on AP, if you are concerned about the possibility of relapse of your scleroderma…not worth taking any risks with that. There are a number of people here using AP for their dermatomyositis or polymyositis…two different forms of myositis with the former including skin involvement. Have you been tested for either of these conditions? I think muscle biopsy is a common test to confirm, but the folk with either of these conditions can probably tell you more. Hopefully a few of these folk will chime in to offer some insight for you.

I don't think it's uncommon for rheumatic diseases to relapse during periods of stress, infection, surgery, etc.

Do you have an AP doc or would you like a listing to be sent to you? Let us know and one of the volunteers would be happy to send to you.

Peace, Maz

 

[TischSEB]

Hi Janet,

Welcome to this board. It is amazing group of supportive and knowledgeable people.

I have no experience with the scleroderma, but it sounds like if the antibiotics bought you some relief during previous myositis flares, it would make sense to try them again. Just curious, were you seeing an AP doctor at the time you were given antibiotics for this? What was the explanation for this at the time?

Tisch

[Janet]

Please let me know what IVEG is.  Do I need a rhumatologist to prescribe it?  I am grateful for your suggestion.

Thanks. 

 

[Janet]

Hi Maz!

I was never told I was in remission.  I did ask my rhumatologist if I could be considered in remission, and he was not ready for me to be in that catagory.  I do not remember what his reasoning was.  I have a prescribing rhumatologist in Virginia that did the AP protocol.  I also see a rhumatologist in Pittsburgh.  He does not believe in the AP protocol but agrees to monitor me.  Both doctors communicate by letter on my progress.

I never had a muscle biopsy for myositis.  I am living thru some great stress.  I also thought it could be the reason for the symptoms.  My doctor in Virginia is very slow to answer phone inquiries and he recently added a $25 per year management fee.  I have not paid it yet.  I am sitting on the fence about the fee.

Thanks for your reply.

Janet

 

[Janet]

Hi Tish,

I was seeing two rhumatiologists at the time I first had myositis.  My treating physician put me on IV clyntomycin for 5 days and after 3 months it was repeated.  Between the IV's, I took 250 mg twice daily Vibramycin, everday.  The doctor in Pittsburgh put me on prednisone.  The explaination was that scleroderma can affect muscles.  He also wanted to include methotrexate.  After reading the pamphlet he gave me on the drug, I found the side affects could be worse that having scleroderma or myositis.  I refused this medicine.  It took about 8 months for the inflammation to go away.  I have not been bothered with it since, that is, until last year.  Currently, when I had pain after the onset of a cold, I was the one to label it myositis since I felt like I remembered how I felt years ago.

I hope to speak to the retired doctor in Iowa for his thoughts on what to do next.

Janet

 

[Maz]

[user=2210]Janet[/user] wrote:

I was never told I was in remission.  I did ask my rhumatologist if I could be considered in remission, and he was not ready for me to be in that catagory.  I do not remember what his reasoning was.  I have a prescribing rhumatologist in Virginia that did the AP protocol.  I also see a rhumatologist in Pittsburgh.  He does not believe in the AP protocol but agrees to monitor me.  Both doctors communicate by letter on my progress.

I never had a muscle biopsy for myositis.  I am living thru some great stress.  I also thought it could be the reason for the symptoms.  My doctor in Virginia is very slow to answer phone inquiries and he recently added a $25 per year management fee.  I have not paid it yet.  I am sitting on the fence about the fee.

Hi Janet,

Your plan to speak with Dr S in Iowa sounds like a good one! 🙂

Sorry, when you asked if you should go back on antibiotics in your first post, I assumed you must have reached remission and had come off them for that reason.

Heavy stress can definitely create the perfect storm for the potential for relapse and you know your body best…if what you're experiencing smacks of what you experienced before, then you're very wise not to ignore it and get back on the wagon asap. If AP worked for you before, it should work again.

We have a physician list of AP docs in PA, if you need that…just let us know. Each doc is going to have their own MO, but it really helps to have a doc who is supportive of your treatment choice so you don't have to swim against the tide when you're sick.

Hope your chat with Dr S is helpful, Janet.

Peace, Maz

[Janet]

Hi Maz,

When I spoke to Cheryl, she gave me the name of Dr. G  that does AP protocol.  I am a patient of his.  I have an appointment in June.  Of course I will address the myositis with him.  I now am curious as to who the other doctors in PA do the protocol.  I would like to know who the other doctors are.  I will keep the information for future reference.  I will also contact my rhumatologist in Virginia since he did do the protocol from the beginning of my onset of the disease.  I hope he returns my call.  I am doing very well physically and I do not want to lose what I have. 

Thank you for your reply.

Janet 🙂

 

 

[Maz]

[user=2210]Janet[/user] wrote:

I now am curious as to who the other doctors in PA do the protocol.  I would like to know who the other doctors are.  I will keep the information for future reference.

 

Hi Janet,

I will send you a private message (called a PM around here, for short). Just go to top right of this page and click where it will say, “You have 1 new message.”

Peace, Maz

[Janet]

Maz,

Thank you for the list.  I printed it and will keep it as a reference.

Janet

 

 

[Maz]

Janet, my pleasure…hope it helps. 🙂

Peace, Maz

[Author]

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