Posted 11 February 2007 - 08:58 AM
I cannot tell you her age, but I will say we are the same age.
I am 53.
Carrol was diagnosed with dermatomyositis 4 years ago.
She is not an Internet geek like I am, so I get to ask the questions.
I have printed several threads for her and am trying to get her involved, at least electronically.
It is winter here and she is suffering from a bout of depression.
There have been many of those, but I have to admit, she has been and is one of the strongest willed people I have ever met.
Though this is primarily a Sclero forum, it seems there are a "lot" of similarities.
I understand there are no experts in the Forum world, but I wonder sometimes if there are any experts in this field period. It seems the medical association struggles with it. You keep hearing "cause unknown" and "no known cure". And it seems the people that knows the most, are the unfortunate ones that are suffering with the disease(s).
Anyway, when Carrol was first diagnosed, a rheumotologist found it. He began the treatment as you are so familiar with. Large doses of prednisone, methotrexate, etc. After a year, they got her down to 5 mg of prednisone. She was feeling great. We went to the beach for a week. When we got back, she started down hill, fast. By the time she got back into the doctor, she had had a relapse.
This bout has been a lot tougher, longer, and she still is not back to where she was just prior to our vacation.
I blamed her relapse on the vacation trip, but the doctor did not agree. He said it was because he reduced the quantity of prednisone to low. He said she would never see that low again. That was a year and a half ago, and physically she is not back to where she was. But he just reduced the prednisone to 7.5 mg. As you all probably know, she has a hard time adjusting to the reduction.
There is a lot I could share, but will not for now. Maybe Carrol will get involved.
I do have a couple of questions.
1) It seems, at least from this forum, that many of you that have DM, have "other" either primary or outlying diseases. Is this common? When Carrol was diagnosed with DM, I don't know that anything else came up or was identified. Can this change after time?
2) She has not had any big issues with her skin, except just prior to when she was diagnosed. Once the medication was started, it seemed her skin cleared up first. She has to watch the sun and cerain lighting, but that is managable.
This question is in reference to her muscles. I read an article on exercise from The Myositis Association where it said "Doctors don't know whether muscle can actually grow back after it has been damaged by myositis". If this is true, that may explain part of why she is not back to where she was before, and may never be. Any thoughts on this?
Again, I want to apologize. I feel kind of like I am intruding here as I am not the one suffering from the disease. But I do know, from being a recovering alcoholic, that though only one in a family may have a disease, the whole family shares, feels and suffers from the symptoms.
Thx agin, Denver
Posted 11 February 2007 - 09:52 AM
Welcome to the forums! It is good to have you join us and you will find that there are other spouses here as well. Your wife is lucky to have your support and I think it is great that you are trying to get information for her and get her involved in the forums.
It sounds like you have read a lot about DM, but in case you haven't seen it here is a link to information on DM from our Sclero A to Z site.
You asked about whether it was likely your wife might develop other diseases in conjunction with her DM. It is impossible to predict what these diseases will do in any given individual. Nonetheless, I think I remember reading some information which suggests that autoimmune diseases often occur in conjunction with one another and if a person has one, they are more likely to have another.
I hope you find this information helpful.
Posted 11 February 2007 - 10:12 AM
Welcome to the forums! Please don't feel like you are intruding here. There are many people here with scleroderma as well as mixed connective tissue disease, lupus, and many other illness that may be in conjustion with sclero or on it's own. This is a great place to meet others who can truly understand what someone else is going through. Have you seen our main websiete at www.sclero.org? There are tons of pages of great information. This one might be very helpful to you are your wife : dermatomyositis
Your wife is very lucky to have a husband getting on line to find out the information whisch may have otherwise been unknown. I truly hope she is feeling better soon. Tell her we are all here to support her and help in any way we can.
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
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International Scleroderma Network (ISN)
Posted 11 February 2007 - 02:17 PM
I have Mixed Connective Tissue Disease (Scleroderma and Dermatomyositis). The muscle pain and fatigue are some of the most common symptoms that I experience. I have them after very little effort or exertion, and whenever my CPK level is high. I have experienced the muscle weakness and lost you described as well.
My doctor tried different medicines, but it was the combination of prednisone and methotrexate that helped with my symptoms and brought my CPK level down. I was later changed to ARAVA because I did not tolerate the methotrexate well. ARAVA and methotrexate are both immunosuppressants.
I don't know whether muscle can actually grow back after it has been damaged by myositis. My impression from the way I feel is that my body is involved in an ongoing battle, so it may not be able to repair itself yet. I have been up and down on the level of prednisone to as low as 4mgs, but I had to go back to 10 mgs.
Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.
Posted 12 February 2007 - 07:00 AM
Looks like you have received great information so far. I just wanted to welcome you and your wife to Sclero Forums. You will find so much comfort and information here.
I think it's wonderful how involved you are with your wife's care - it must be a big comfort to her.
Posted 12 February 2007 - 06:09 PM
When my first symptoms started I did a bunch of reading on DM. If you don't already know the sun is not good for this autoimmune disease.
Check out IVIG therapy it has helped others on this site with autoimmune myositis (dm, pm, sclero, etc)
Also check out Rituximab it's a genetically engineered drug used for many many autoimmune diseases. It's not as toxic as many other drugs, and easier on the body than steroids. Look for Dr. Looney SP??? He's a leading researcher on autoimmune uses for Rituxan
Stem cell transplants also have helped people with DM... and they are much safer than most people know. Many great links on this site.
Some people on this site have experienced great improvement in muscle strength after flares of myositis. So I think that suggests patients can recover muscle function?? What do I know though.
People here know empathy big time. So we're happy to help and glad you found the site.
Michael in Florida
Posted 03 March 2007 - 01:59 AM
I just happened to go look at old posts looking for something and saw this. I have DM and right now I am in a flare from it. I just got myself a shower chair to help me take more control of things. I also just got a stool for the kitchen for dishes and cooking. I take 20 mg of prednisone a day but I have started to taper it down to 15 as I have put on a good amount of weight and due to heart trouble from this and sclero I do not think my weight is a good thing. Anyway back to this, I know that last time I was in prednisone I was able to walk great but once I tapered off my walking went down hill. I had a hard time just walking around my home. Right now as I said I am taking prednisone again and I am in pain in my upper legs and very weak around my torso.
I got my DM diagnosis this past spring. I should have known something was wrong due to the skin color changes I was having but I put it off to old sun burns etc. My skin on my face changed, my chest was leather like and I had the rash on my shoulders and back, along with itching that forced me to sleep with a back scratcher in my bed. I went to a Dermatologist who did a skin biopsy and sent me on to a rhummy. Just one look at me and they knew what I had. They put me on the prednisone then but just 10 mg a day. ( I also have scleroderma and other things)
What is your wife taking for this? I am looking into the Methotrexate myself. Is she walking ok and how are her arms? I had to cut my hair short becaus I didn't have the muscles to do my hair everyday. Now its a wash and go! I learned that I need to make things simple so I can save engery for things I really need. ( I am in midddle of adopting a 2 year old) so you see how I need my engery lol.
I wish you both the best. I know how hard it is to get a diagnosis of something that is rear. when I go to the hospital even the nurses have no idea what I am talking about when I say I have DM. Most dont even know sclero...
If Life hands you lemons, make lemonade.
Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.
Posted 04 March 2007 - 12:16 PM
Welcome to a place I wouldn't be without!
You and Carrol (though I don't "really know" her age ) are just a "bit" younger than I.
Though I must claim ignorance about DM right now... I intend to check it out before too long. However, I do know that when on MTX, one must be so careful, as the sun and it are not the best of friends (I was on methotrexate for 13 years, treating Psoriasis) I also found out that Scleroderma and the sun don't mix either.
Despite Carrol feeling as she did, upon the return from your vacation, I hope the time away lifted her spirits, as I'm sure that was your primary goal?
Denver, I'm glad Carrol has you... Your caring and concern has brought you here and hopefully, she will join you here, at some point .
In the meantime, my best to you both!