POLYMYOSITIS

• By momcaregiver
• Reply 2044650
• March 16, 2011 at 9:09 am
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Steroids will put that weight right back on and get your patience level reved up for some added moodyness. My husband has polymyositis. He seems to think that the steriods in the beginning worked pretty quickly. He is now on IVIG treatments. They are not working as good as they do for most pateints, most go into a remission I guess you would call it. These are very expensive, usually have to fight insurance to get them. He went through MDA and they helped him to get them covered. He does not have swallowing problems as of yet.

My son has had the peg in the early days of an anoxic brain injury, its really no big deal, but once in has to stay for like eight weeks before it can be removed.

There are several others on this sight that have it also. They can mabey shed some more infomation to help you through this. Ruth

• By smallfrydj
• Reply 2044759
• March 16, 2011 at 9:48 am
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I also have Polymyositis however it was acquired by an antibiotic (Jan 10, 2011). They have me steriods and it made my condition worse I stopped it after two days. I lost 10 lbs (I didn't have 10 lbs to lose). They have me some other drug (don't remember what it was) and I had an allergic reaction. I stopped all drugs and just let the hospital give me plain IV's for dehydration. It's been months since it first started but what I can tell you the biggest changes have been about 5000 mg of fish oil, 3000 mg of coconut oil, Glucosamine Chondroitin 1200 mg, MSM 3000 mg, vitamin d 10k UI, vitamin e 800 UI, vitamin c 3000 mg, and oregano oil 400 mg. I swear by this combination. It will not cure polymyositis but it sure helps me with my body movement.

I am also applying castor oil over my joints before bedtime and sleeping in flannels. Castor oil is another little miracle.

From what I've read about steriods is that it lowers your immunity which isn't a good thing when your body needs all the TLC it can get. When I heard about that...I was pissed at my doctor. They know shit. They only know how to treat symptoms...not the total package.

I pray your boyfriend starts to improve!

• By Mygianga
• Reply 2046748
• March 17, 2011 at 1:19 am
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Thank you for your comments... although I still have a million questions... He is getting the peg tube tomorrow sometime, Been on the steroids for a week, lost another 10 pounds since admitted, he was admitted at 156 and is now down to 146... how long does it take before the weight starts coming back on? we are still waiting for insurance to be approved... Now that he hasn't worked in a month he finally got his temp. disability... but does medical come with that? Is this a disease that he will have to be on disability for the rest of his life? AND WOW that is a lot of vitamins!!! I will have to make a note of all that! I know when he comes home I will be asking a lot more but right now I spend 8 to 13 hours in his room just hanging out, trying to have him walk around the ward and always a few spins around outside in the wheelchair just for fresh air! lol when we have permission! wow permission at our age... He is the most patient man I have ever met but I can already see the snappiness coming out in him... which is kinda good... he is way to easy on people who need a slap in the face... maybe now they'll get one! lol Thank you again for your comments and if you have any time frames on how fast or slow this recovery process is it would help me know what I have to prepare for within myself and for him!
Thanx again!
Laura

• By laurenabbey
• Reply 2047203 · In reply to 2044759 by smallfrydj
• March 17, 2011 at 9:43 am
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Hi Small Fry person, I love your post. I'm going to go get coconut oil today. I've been a secret user of castor oil for a long time. I'm so glad you are feeling more mobile. It sounds like you did get a dx. Also, going to keep trying to eat raw, which I hear is the solution in addition to all the supplements. Yeahhhhhhh!!!!! Gerri aka laurenabbey

• By smallfrydj
• Reply 2047950
• March 17, 2011 at 2:58 pm
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Laura, I wish I could give you a time frame on when he'll start feeling better. But to help his recovery...nutrition is absolutely the most important element. I used to roll my eyes at the folks who ate nothing but organic/fruits/vegetables...but the simple truth is he needs all the nutrition (minus chemicals) that he can get. Modern medicine forgets the very basics. My doctor concurs with laurenabbey's suggestion of eating raw...I actually started the other day. LOL

Do the doctors have ideas on what triggered his polymyositis?

• By Seraphim
• Reply 2048198 · In reply to 2046748 by Mygianga
• March 17, 2011 at 4:53 pm
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For what it is worth this is my story......get ready to get REALLY medically literate you are going to have to advocate like hell for your man!!.......I have been on and off steroids and they will end up making you worse. Only do them if you plan to become terminal. I am NOT kidding!! Explore alternative medicine with ALL your might!!! At least make it an adjunct. We almost went bankrupt over my ordeal. Unfortunately, you are experiencing the 'tip of the iceberg' and I really feel for your situation. If I can come back from what has happened to me? Your boyfriend can reclaim his life too. In the herbal, nutritional and homeopathic realm, there are medicinal equivalents to every western drug your boyfriend is on. DO NOT BE MIS-LED!! I posted this on another forum so glean what is useful and throw out the rest. Your ability to discern what is useful and what is not is of great importance:)
I have been to hell and back over the last 6 years due to 2 complex regional pain syndromes, degenerative disc disease (severe case), 3 autoimmune diseases (endocrinopathies that cause excruciating damage to my micro-circulation), a mitochondrial disorder, Ehlers-Danlos and 3 heart defects. I know this post will go outside the scope of this particular focus but I felt the need to tell my story anyway. It is my hope that my experience will help folks understand the truly complex and 'crazy-making' nature of the atmosphere, a multitude of people who are sick and/or in pain, are dealing with in our medical institutions.
I had a 'Bladder Sling' installed in 2007 due to multiple prolapse issues that became increasingly difficult to deal with. I was finally diagnosed with Ehlers-Danlos, a connective tissue disease with many variants. The diagnosis was a nightmare in itself. It is unbelievable to me what one has to go through just to get a basic understanding of one's pathology/pathologies. The 'sling' mechanically and auto-immunologically failed. The mechanical failure caused a progressive unrelenting pain 4 months post-op until it was finally removed 18 months later. The 'sling' collapsed to the right and wrapped around my right ovary creating a small inter-mittant bleed.
The 'sling' is considered a permanent surgery. Don't get me started on un-informed consent. My son is a lawyer, thank God. There are hundreds of class-action lawsuits currently underway. The lawsuits have recently become personal injury cases. When I filed my case, there was no precedent for what happened to me, so, I am joining the personal injury band wagon. It became increasingly clear I would have to pay for all the expert testimony, which would cost thousands of dollars.
The FDA issued a warning in 2008 about the 'petroleum mesh' they use in these 'slings' (Bard-Avaulte-spell?). The rat studies, that revealed a problem with the 'mesh' used on vaginal tissue, were suppressed. This material has been used on herniations, primarily for male muscle tissue, for years. The 'mesh' erodes through the vaginal wall and then recedes until you eventually go septic. You aren't usually medically literate enough to know your WBC (white blood count) isn't being watched by your Doctor. Even if it is, the wagons will circle. You will be lied to, especially if your surgeon is high-profile. Part of my intent with this post, is to create awareness about this particular intervention. Women need to understand you could face 'castration' if you have a 'sling' installed. Do the necessary research before you make a decision.
The first red-flag was when I became leukopenic early in 2009. My WBC had been showing a pattern for a while but, like I said, unless you are EXTREMELY medically literate, you won't understand what is actually happening and your Doctor won't tell you. My neutrophils would spike, showing a pattern of my body trying to fight. My lymphocytes were already depleted from dealing with years of lymphocytic infiltration due to autoimmune pathologies. I didn't have much to fight with. I had 5 surgeries over a 5 year period and each surgery was due to archaic and incompetent surgical practices still being used for prolapse.
The lies and betrayals were abominable. My story is hard to believe. However, it is a reflection of the truth about the heinous medical environment far too many people are having to contend with. The people I see in rheumatologist's offices are predominantly women over 50, who's husband's have left them and are on the verge of destitution.
I literally ran for my life the entire year of 2009. I had to go outside western medicine and get a Naturopath to document what was happening. She also had to help me find a surgeon outside the radar of Oregon Health Sciences University. I have worked with alternative medicine for years and wish I never had to set foot in western medicine. I know western medicine is great at crisis and I was in crisis. Technology has become pretty awesome. But, western medicine sucks at prevention and palliative care. Prior to 2009, I was on 2-4 5/750 hydrocodone per day. It was pretty much an as needed situation. And yes, even though I was an established patient with a Rheumatologist, the idea of a 'flare' was not fully appreciated. I had to keep very tight documentation of how my pain existed in a continuum, and constantly deal with having to refine the complex nature of my enigmatic case. It has taken six years to complete a comprehensive differential, let alone get adequate pain management without dealing unrelenting judgement about my character.
No matter how deletrious your case gets? You still have to advocate for yourself VERY hard. I can't say enough about becoming medically literate for the sake of yourself and those you care about. The 'pain medication' situation is really awful to deal with no matter where you are in the continuum of illness. Every single one of us NEEDS to understand the nature of pain. It comes in many forms. The advances we have made in understanding pain are encouraging. Pain clinics are particularly enlightened but you will have to have a primary physician who is willing to administer the actual pain medication. Nobody wants to deal with the liability anymore. Before the 'sling' was removed in December of 2009, I was on a 50 mcg. fentynl patch, (17) 15 mg. oxycodone and 10-15 mg. of xanax a day.
I developed post-traumatic-stress from the cumulative effect of what happened over 5-6 years. I almost died from the 'sling'. if I hadn't known how to optimize my health through diet, alternative medicine, exercising (no matter how bad it got) I would not have been able to come back as well as I have. I dropped to 110 lbs, which was terrifying. I am 5'61/2" tall and normally 135 lbs. I am back up to 125 lbs. and down to (8) 15 mg. oxycodone and 3 mg. of xanax. I have to keep my weight here for a lot of reasons now. I did this myself with a little help from a psychiatric nurse practitioner. I wasn't ever addicted but you do develop tolerance, which creates dependence. There is no way around this. I don't know where my new baseline is yet. But I hope it is lower than where I am. HALLELUJAH!!!!!!!
I am currently writing a book that emphasizes what has become of the institution of medicine both politically, environmentally, from the standpoint of pain and medical literacy. Medical literacy is the people's only recourse. What education was to the common person in the 20th century, medical literacy will be in the 21st century. Otherwise, you are at the mercy of Doctor's. Doctors run the gamut of being extremely integral and compassionate to being homicidal maniacs. I have found that most of the Doctors fall somewhere in the middle. They are to one degree or another incompetent, lack curiosity and are apathetic.
I finally erected a criteria for hiring a Doctor to work for me. If they don't perform, I fire them. Believe me, this has been very hard to accomplish and I am just now feeling like I can trust Doctors again. The first thing I tell them is I will not tolerate 'intellectual classism'. 'Intellectual classism' is every bit as destructive as racism, sexism, classism (in general) and adultism. It allows educated people to oppress those less educated. Oppression is rampant in all societies. We have a LONG way to go but I am hopeful despite everything. You have two choices, transcend or become bitter and effectual...we are all work's in progress:)....I wish the very best to you all, Seraphim

• By Seraphim
• Reply 2048215
• March 17, 2011 at 4:59 pm
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I can't applaud the post about nutrition enough!!!!!!!!!!!!!! Healing oneself is a lost art.....the knowledge and wisdom has systematically been stripped from us in the same way women were systematically stripped of their land, medicinal wisdom and mid-wifery before-during and after the crusades....

• By Mygianga
• Reply 2049221
• March 18, 2011 at 2:30 am
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Well he is coming home tomorrow with the peg tube that was inserted today... So for now I will be dumping cans in his tube for now... 2400 calories a day... I will update more when I have the specifics of what it is and his progress...
Seraphim:: I will have to read your post tomorrow when he is her and I'm not so tired But I can't thank you enough for taking the time to write your story... I promise I will read it as soon as I get him home tomorrow... They gave him the NG Tube size 14 then it cot clogged and replaced it with an 18 (I'm thinking they did that so he would be so uncomfortable that he would want the PEG tube so they could get him out of there... It worked... So we'll see how it goes... Thanks again and I'll be getting back to this tomorrow!

• By laurenabbey
• Reply 2049620
• March 18, 2011 at 9:38 am
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Mygianga, There is great supplementation info at Life Extention Foundation. LEF.org. Click on health concerns and then find your issue. Some like Polymyositis are not specifically covered, but they have a general auto immune page. I wouldn't necessarily go with their brand of supplements just go to good vitamin isle or store. Also, google search anti infammatory diets. :)

• By Mygianga
• Reply 2057147
• March 21, 2011 at 7:12 pm
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Well we got home on Friday afternoon... By Saturday afternoon we we're in the ER because there was more bleeding than I was comfortable with dripping down from his PEG area. They just bandaged it up and took some blood to check his blood count and sent us home after 5 hours... Well within 30 minutes after shift change and I saw his Doctor in the ER and he came and checked him out... then we were released...
He is getting 16oz of Jevity 1.2 Four times a day and he seems to be gaining weight... BUT... he is still hungry (which is good because he hasn't had an appetite in a couple of months) Are there other things I can stick in there (PEG Tub) without a lot of sugars in it because we don't want to develop diabetes as he is healing... I have just been giving him water between feedings and that seems to help, I let him suck on a piece of licorice while he eats so he at least has a taste in his mouth while I'm filling his tummy... No swallowing allowed until he passes his barium swallow and all is safe... But so far so good except for the little bit of bleeding but that stopped while we were in the ER... I haven't changed the bandages because I am a huge baby when it comes to blood so I'm gonna wait for the home nurse to come and she can do it...
Thank you all for your advice so far and I hope y'all are feeling good!

• By momcaregiver
• Reply 2057201 · In reply to 2057147 by Mygianga
• March 21, 2011 at 7:32 pm
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Sounds like that prednisone is working already. All I can say is my husband never ate much in one sitting, but on that stuff could actually get his money worth out of a buffet:) Once he passes his swallowing test he might still have to eat through different stages of food before he can eat everything. Glad to here hes at home though. Has he went to apply for disability yet, cause it can take awhile to receive it. Then it takes two years to receive medicare benifits if he doesn`t improve enough to go back to work. Ruth

• By Mygianga
• Reply 2059041
• March 22, 2011 at 2:23 pm
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We got the short disability already kicked in! (thank god) I think the hospital was actually working on an insurance plan for him to help pay for his 3 1/2 week stay... But they still give us everything he needs at the hospital as long as I go and pick it up. They say if the meds work the way their supposed to he should be up and running in 6 months!! :) So far so good!! I'll keep his progress posted for all that are interested or have any comments or concerns!
Thanx, Laura

• By eventuallyyours
• Reply 2066701
• March 25, 2011 at 4:07 pm
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Hi Laura,

I was told I had Dermatomyositis back in July 2010. You can see my profile for details. I was prescribed Pred and Imuran. I had loads of side effects too. It was a long road with many tests etc.

My counts have dropped from 4000 to 375 and I just went to Yoga for the first time in 9 months! There is lots of possibility and hope! Both of you have to stay on the positive side of his health.

I had a great coach/mentor and I would be happy to share my experience with you and your boyfriend.

Wishing you and yours health and wellness!
Mina

• By brandialex28
• Reply 2087008
• April 3, 2011 at 1:13 pm
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I lost 23 lbs of muscle (atrophy) when I was first diagnosed with Polymyositis as well. Even on the VERY high doses of Prednisone I still felt very weak for a few months and continued to lose weight. I'd say I started to gain back the weight after about 5-6 moths..however in the form of "fat" from the steroids rather than the muscle I lost. Not that I am fat by any means, my body moreso just morphed....
It takes time, that I know and is scary. I like your husband did not feel suddenly better on Prednisone, I felt very weak. After 3 months of just Prednisone they added Methotrexate and IVIG, and only then did I start to feel a difference. Prednisone works differently for everyone, but it is always the "first step" ..I know how frustrating it can be :)

• By laurenabbey
• Reply 2130875
• April 21, 2011 at 9:35 am
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My latest nutritional coup is a supplement called Curamin. ( google it) I took a little bit more than what they recommended on the bottle and have been able to taper my prednisone from 3 to 2. Thought I'd be at 3 forever. Also taking multi minerals and vitamin d (anyone on pred has to get supplemental calcium and d as pred eats yours bones so to speak) Bcomplex, fish oil, n acetyl cysteine, co enzyme q10, vit c, msm, vit e, and vit k.

• By zenk
• Reply 2132801
• April 22, 2011 at 3:21 am
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Hi inspiring friends with polymiositis,
I was diagnosed with poly in 92. Took steroids for about 3 months to get my muscle enzymes down. My Rheumatologist tracked the disease by the muscle enzyme level. I have been on methotrexate for poly which helped me lower my steroids. 15 mg. Im per wk. I administer the shot myself in my thigh. It doesn't hurt and ewith the shot i avoid any stomach upset as with the pills. Hope everyone is feeling alittle better today. Zenk

• By BoonBoon
• Reply 2135104
• April 23, 2011 at 2:54 am
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Hi! I am new to this group. I am too diagnosed with Polymyositis. It was back in November 2010 and I was put on high dose of Pred and Azarthioprine. However, my doc changed Azar to Cellcept. I was doing very well at the begining. My cpk came down from 7000 to 291 a month ago with only 1000mg and 12.5mg Pred. When my doc reduced Cellcept to 500mg and Pred 10mg, 3 weeks ago, my cpk slowly climbed up again. As today, it is 491 and my doc has just increased my cellcept to 1000mg and Pred to 15mg.

Inspite of the increase of dosage, I feel fatigue and body aching especially the arms, fingers joints stiff and aching. 2 days ago Ultrasound scan showed that i am having oesteoarthritis on my two thumbs. Other fingers slightly swell due to the disease.

I feel frust and have been feeling depressed as i am totally lost as to what has happened.