dermatomyositis life expectancy

hi my name is roger and I also was diagnosed with the disease in 2011 and also was found to have cancer which came with the disease, I was in and out of the hospital until in April 2010 they finally were able to find out and since 2014 I have been in remission with the help of my wife and family sticking by my side and the lord above . thanks for letting me share my story with you all

How can i contact you?

How can i contact you

Hi Kimberly, my sister has been diagnosed with Dermatomyositis. This year January. She has been to several doctors in the beginning and has found one that really wants to help. In the mean time of trying several drugs she's not getting better. They are going to start her on the Rituxan soon. I sent her your letter here and she would love to talk to you. Is there any chance she can email you or be able to have a private conversation with you? We just all feel so helpless. Thank you, I hope you get this, I've never done this before.
Teri

SORRY JUST RESPONDING BACK, IM TAKING RITUXAN MADE BY GENETECH, MY INFUSIONS ARE EVERY 6 MONTHS SO FAR UNLESS I FLARE FASTER, BUT SO FAR IT HAS MADE ME MOBILE AND I CAN WORK, IM SELF EMPLOYED BIOMEDICAL ENGINEER SO I HAVE TO REPAIR CALIBRATE MEDICAL EQUIPMENT. ITS KINDA IRONIC. LOL BUT WITH THE INFUSIONS WHICH I DO TWO ROUND EVERY SIX MONTHS EACH ROUND IS TWO WEEKS APART AND I TAKE STILL 10MG PREDNISONE DAILY WHICH I WISH I COULD GET OFF OF BECAUSE OF WEIGHT GAIN DUE TO FLUID RETENTION. BUT BETTER TO BE A LITTLE HEAVIER AS MY DOCTOR SAYS THEN NOT BE ABLE TO WALK. I ALSO TAKE FOLIC ACID EVERY DAY TO COUNTER SIDE EFFECTS ABOUT 2MG AND 10MG OF BIOTIN FOR HAIR NAILS AND SKIN, RITUXAN CHEMO IS ONE CHEMO THAT HELPS WITH SKIN AND HAIR. MY INFUSION NURSE TOLD ME TO TAKE MORE FOLIC SO I AM TAKING THE 2MG DAILY, I BELIEVE BETWEEN THE DERMATOMYOSITIS AND STEROIDS IT CONTRIBUTES MOST TO HAIR LOSS. . MY HAIR COMES AND GOES! BUT IT COMES IN THICK AND CURLY VS STRAIGHT WHICH MY HAIR NORMALLY WAS. ANYWAY I HAVE BENEFITED TREMENDOUSLY FROM RITUXAN. I CAN GET OFF A TOILET SEAT, I CAN PUT MY CLOTES ON ZIP AND BUTTON, OPEN A WATER BOTTLE AND ACTUALLY HOLD IT WITHOUT IT FEELING LIKE IM WEIGHT LIFTING! I ALSO HAD DYSPHAGIA AND COULD NOT SWALLOW FOOD WITHOUT ASPIRATING IT. I HAVE COME A LONG WAY SINCE IT FIRST HIT OVERNIGHT. IT WAS PRETTY SCARY FIRST TOTALLY PHYSICAL AND THEN TOTALLY DOWN LIKE I HAD LEGS ARMS ETC... THAT WEIGHED HUNDREDS OF POUNDS AND MY QUALITY OF LIFE WAS AWFUL BUT I KEPT POSITIVE AND YES WENT OUT AN BOUGHT ALL KINDS OF WIGS LOL MY DAUGHTER HELPLED ME AND MY MOTHER AND SISTER WITHOUT THEM I DONT KNOW HOW I COULD OF MADE IT FAR, ITS BEEN OVER 3 YEARS NOW.AND IM STILL WORKING AND DOING AS MUCH AS I CAN. I WALK MY GREYHOUND ITS GOOD FOR BOTH OF US AND KEEPING MOBILITY IS KEY IN THIS. I DO MY INFUSIONS AT SUTTER GOULD MODESTO IN CALIFORNIA.

TERI I HOPE YOUR DAUGHTER IS DOING WELL IM SORRY I HAVENT BEEN IN CONTACT. IS SHE A JUVENILE, BECAUSE THEY CAN BOUNCE BACK AND GO INTO COMPLETE REMISSION THE MAJORITY. GOD BLESS

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teri im sorry i meant your sister not daughter. i go to whats called a KIT meeting support group that has many speakers on the disease including inclusive body myositis, its called KIT Keep in touch. we have many people with DM PM AND IBM. I CAN GIVE YOU INFO ON IT, WE HAVE OUR MEETINGS IN NORTHERN CA AT EDEN MEDIAL CENTER IN CASTRO VALLEY CA, THERE IS ANNUAL CONFERENCES ALSO ALL OVER THE COUNTRY TOO. THEY HAVE FOUND A MARKER FOR MYOSITITS I CAN SHOOT YOU OVER THE DOCTOR AND INFO THE MEDICINE IS IN ITS 2ND PHASE AND MAY BE A CURE. YAY GOD BLESS

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LUCY, GOOD LUCK MY THOUGHTS AND PRAYERS ARE WITH YOU, I DID NOT GO WITH IVIG I KNEW ADDING ANTIBODIES FROM HEALTHY DONORS WAS GOING TO CREATE MY BAD ANTIBODIES TO TURN THE GOOD ONES INTO BAD ONES. PLUS I HAVE DERMATOMYOSITIS, POLYMYOSITIS OF COURSE AND SCLERODERMA SCLEROSIS ALONG WITH OSTEO NECROSIS AND LAST BUT NOT LEAST NOW OSTEO PEROSIS WHICH I BLAME ON STEROIDS PREDNISONE WHICH IVE BEEN ON FOR OVER 3 YEARS . THERE IS LITTLE SIDE EFFECTS FROM RITUXAN, THE NICE THING ABOUT IT IS IT DOESNT CAUSE HAIR LOSS AND CURES THE SKIN ALSO. STEROIDS AND WHEN I WAS FIRST PUT ON METHOTRAXATE WAS MAKING ME LOOSE HAIR, BUT WHEN I GOT THE DISEASE MY HAIR WAS THINNING ON TOP PRETTY BAD. I COULDNT EVEN PULL OFF A DONALD TRUMP! LOL WIGS HERE I CAME. ACTUALLY I WAS GETTING A LOT OF COMPLIMENTS ON MY WIGS THEY LOOKED REAL. TIME HAS CHANGED. I START UP ANOTHER TWO ROUNDS OF RITUXAN IN JANUARY AT SUTTER GOULD MODESTO, CA. MY DOCTOR IS DR. MAHMOOD SHE IS FANTASTIC AND WORKS HAND IN HAND WITH UCSF RARE CONNECTIVE TISSUE DISEASE TEAM BECAUSE NOBODY NEW WHAT I HAD FIRST IT WAS LUPUS THEN FINALLY BIOPSY OF MUSCLE SENT TO UCSF AND LO AND BEHOLD I GOT THE TRIPLE WHAMMY, KEEP POSITIVE, KEEP LAUGHING AND TRY TO KEEP MOBILE, IT DOES WONDERS. I KNOW THIS IS LONG BUT IT SEEMS LIKE ITS GETTING MORE PREVALENT ESPECIALLY IN WOMEN IN THEIR FORTIES. I WAS DIAGNOSED AT 47 IM NOW 50 AND TURNING 51 IN JANUARY. RITUXAN HAS BEEN FOR ME THE BEST THING, I STUDIED IT READ ABOUT IT EVERYTHING VS IVIG. ASKED MY RA DOC AND SAID IF YOU HAD WHAT I HAVE WHAT WOULD YOU DO, SHE DIDNT HESITATE, SHE SAID RITUXAN. I WAS IN TOTAL AGREEMENT. THANK YOU GENETECH IN SF FOR MAKING SUCH GREAT DRUGS. I SUGGEST IF YOUR DOCTOR SAYS DO IT, GO FOR RITUXAN, I MEAN REALLY WHAT DO YOU HAVE TO LOOSE, YOU WILL GAIN. IM ALL FOR IT. GOD BLESS LET ME KNOW HOW YOUR DOING.

KIMBERLY

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I KNOW ITS A VERY DIFFICULT DISEASE FIRST YOUR MOVING AROUND NEXT YOU FEEL PARALYZED AT LEAST FOR ME IT WAS PRETTY MUCH DEBILITATING . BUT RITUXAX WORKS FOR ME AND I VERY MOBILE NOW, EVERY SIX MONTHS TWO ROUNDS OF RITUXAN AND OF COURSE 10MG PREDNISON EVERY DAY

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Hi, my godchild was diagnosed with dermatomyositis on July this year, she had been misdiagnosed with, and treated for allergies before. now she is at a hospital. As yesterday she was told she needs a tube on her thought so she can breathe. She has deteriorated, physically and emotionally. She is 23 years old only and is really sad to see her like that. She can't get off her bed or even answer her phone or swallow. Did your daughter go thru the same experiences? how was she treated and where?

I saw your message. I have DM PM and scleroderma sclerosis. I had a bad rash that didn't itch. Thought it was detergent or something else so I switched stuff. Then one night I itched finally and it was horrible that morning I woke up and couldn't move a muscle I was taken to the hospital thought lupus but took a muscle biopsy sent it to ucsf and wham I got the triple whammy. Disphagia set in my esophageal muscles couldn't swallow the smallest things a speech therapist tough me to swallow w head tilted down to relax the muscles also drink thicker drinks and food pills go down easy. Water too thin and you aspirate. As for the breathing DM can cause intestinal lung disease. I'm on prednisone for last three years and I get rituxan infusions every six months two rounds two weeks apart because it's a high dose of chemo 1000 mg they premeditated w solumedrol steroid and benadryl infused before they start the rituxan to counter any side effects. I have been very mobile since and also rituxan is used for non Hodgkins lymphoma and lymphatic cancers and lung cancer but found it works w connective tissue diseases and autoimmune . It's a hard disease first your physical and then you can barely if at all get out of bed or a chair and forget the toilet I've been stuck on regular toilet seats til someone came to help me. I put raised seats on my toilets big help because you need leg extension. You feel like your body legs arms weigh a ton and have no muscle just so very weak. I know this is long but I tried many drugs before rituxan. My body was drug resistant to methotrexate and others etc. I hope your daughter can bounce back. I'm sure you've asked doctors what drugs can help. But has any tried rituxan. I was pretty much paralyzed. My prayers w your daughter and you. God bless. Feel free to message me

Kimberly

Hello. Can u contact me? I have derma, and have had about 5 years. I was symptom free for about a year or more. I'm back in total activation, and my doc is thinking of ritoxin, but this in itself seems dangerous. I would love to speak with you.
Sincerely
Jennifer

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I just did my first dosing of rituxan last weekend. At this point it's kinda my last ditch hope as everything else has failed.

Hi Teri,

its Kimberly, i was just wondering how your sister is doing? i just had 2 rounds of rituxan again. Im doing well on it. I know you said your sister was going to start rituxan soon and wondered if she has a positive reaction. GOD BLESS YOUR SISTER AND YOU AND YOUR FAMILY. My prayers are with her. Kimberly

I was diagnosed in January. I have been on Cellcept since Jan 27. Next week they will start me on an IVIG treatment, which I had understood is an effetive treatment. Now I'm worried and wish the would have tried Retuxin.What is the clay?