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BeckerMD Forums |
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Subject :Steroids and Cardiac Problem Prevention..
2008-08-08 13:17:32
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| kgoodfellow |
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Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver |
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Hey Folks
This might be another point to consider when thinking about steroids. This paper shows that there is a dramatic difference between DMD kids that were given steroids as a preventive measure against heart function decline. It shows a dramatic benefit. This is particularly interesting, since many BMD folks also have heart issues...I wonder if steroid treatment would help prevent the onset like the DMD kids.? |
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K. Goodfellow |
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Subject :Good article Kevin..
2008-08-19 11:40:59
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| bstephenson |
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Joined: 2007-02-20 17:57:39
Posts: 11
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Kevin,
I read the posted article with great interest. As a BMD patient who has not tried steroids, I am now wondering if this is something to try. I am on ACE inhibitors and Beta blockers to prevent this, so why not steroids too.
I would like to know how things are going with your regimen of steroids.
Thanks for the post. |
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Subject :steriods and bmd..
2008-08-23 22:42:05
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| alisonabrahams |
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Joined: 2008-05-18 04:42:51
Posts: 12
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[b]Hi. I read the article on steriods. My husband has beckers and is now dealing with heart failure. We asked about steriods 2 years ago and were told it wasnt an option. There are trials in this country on dmd sufferers so we knew about them. My husband has had valve repair and an ICD bivent fitted this year. Unfortunately he hasn,t improved a great deal, getting weaker and also more dependant on his powerchair. He is 45 and was working up until last december when he had heart failure. WE would like to hear off anyone dealing with heart problems, as my husband is currently very depressed with how agressive the beckers has become in the past year. he is on water tabs, bloodpressure, ace inhib, betablockers and warefin, as you can see , he,s had a rough 9mths. we are due at the md clinic next month and hoping for some answers. hope you can reply to us.[/b] |
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jeremy age 45 limited mob heart and breathing problems diagnosis age 28 |
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Subject :..
2008-08-24 01:03:10
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| MATT2003 |
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| Ninja |
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Joined: 2007-03-28 00:42:19
Posts: 81
Location: Chicago,IL |
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Is there anyone on Steriods yet?
Alison how long ago did your husband start having heart issues and when did he start on the medications?
I have issues with the left ventricle which is working at 32% from what I'm told.
I don't have much to offer you in information only that I hope that they let your husband atleast try the steriods. So you can fill us in. |
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Any questions feel free to contact me. |
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Subject :steriods..
2008-08-24 03:22:51
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| alisonabrahams |
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Joined: 2008-05-18 04:42:51
Posts: 12
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[b]Hi Matt, Jeremy had a heart murmur for some years. 2 yrs ago his heart stretched slightly so was being monitored every 6mths,. Was put on bp tablets 3yrs ago and water tabs low dose last year. He also has left side failure, his heart function was 30% now less than that. He had a mitral valve repair in Feb 08 and the ICD fitted May 08, which is controlling the heart rate. He,s been on a cocktail of drugs since the heart failure last December. They wont give him steriods, in our area which is Wales UK, the trials are for DMD. our friends son has DMD and has found them helpful. Do you get very tired and weak. My Husband finds everything exhausting, he is very limited to what he can do now. The biggest change has been having to use a wheelchair, he was mobile up until December 07, very slow but getting there, now its only around the house. how do you pass the time, he would like know, how other sufferers cope. [/b] |
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jeremy age 45 limited mob heart and breathing problems diagnosis age 28 |
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Subject :..
2008-08-24 09:10:48
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| MATT2003 |
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| Ninja |
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Joined: 2007-03-28 00:42:19
Posts: 81
Location: Chicago,IL |
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Alison,
I'm still mobile and keep active. I do get tired towards the end of my day. I still work and pretty much fight the on and off pains I get in my legs. Right now my doctor has me on a cocktail but unknown for the future. I only know on what my relatives have. I don't know what he does. I think he surfs the net and things. I feel for you guys this is the botherosme thing for me is the future. For most BMD guys they are pretty active and then once they get up to there 40's and above its the unknown. Here in the states I read allot about testing steriods,stem cell and other things and then there always seems to be something that stops it. Either the company the goverment or you don't here anything anymore. MDA to me isn't organized enough to keep people updated. I see allot of people who are willing to do trials and be the guinea pig for labs but some times when you read something the government says no way. I did read this week a boys parents sued for him to try a certain drug. I say it in yahoo news after I put in Muscular Dystrophy. Tthough I think he had DMD.,...
Tell Jeremy I'm here for him across the pound..... |
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Any questions feel free to contact me. |
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Subject :steriods..
2008-08-24 23:05:37
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| alisonabrahams |
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Joined: 2008-05-18 04:42:51
Posts: 12
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[b]Thanks for replying Matt, glad your still working, Jeremy found it much easier to deal with the pain when he was working. he felt it justfied it , in some way. I,m hoping he will pick up and feel more positive, althought its very difficult as life has changed so dramatically in the past year. We had a email today from a sufferer who is in his 60.s so that gave him a lift. You didn,t say how old you are, and I take it you have a relative with beckers as well. Jer is one of 5 children and only he has md, luckily they were all clear. Jer wasn,t diagnosed until he was 28 so it was a big shock and obviously the acceleration this past year has been hard to accept. All we and you can do is keep fighting and hoping. I think it would be great if there was more awareness in this country, as we constantly battle with medical issues, as noone understands the limitations. Jer looks fit as he has broad shoulders and his chest is big, he looks like a rugby player from the top, its only when he walks or gets up from a chair you see the problem, are you the same he,s asking. I do the talking for him as he isnt good on the keyboard and finds it hard to talk about it, hear from you soon alison and jer[/b] |
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jeremy age 45 limited mob heart and breathing problems diagnosis age 28 |
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Subject :..
2008-08-25 00:07:45
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| MATT2003 |
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| Ninja |
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Joined: 2007-03-28 00:42:19
Posts: 81
Location: Chicago,IL |
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Hello guys... I'm 34 , married, I'm a small build 5'6' 145 lbs.. I was diagnosed at around 12-13. I have gone up an down in weight over the years topped off at 167 lbs and started to loose the mass over years. I have problems with stairs and need to push off with my hand off my knee to get up or use the arm off a chair. I can feel the body stiffening up and slowing down. Though I still push. My younger brother has it and is actually a bigger build. I have 2 sets of cousins one set is in there 50's and 60's and they are doing good. THey are in wheel chairs and I know that one has heart issuess and has a ICD and is on meds.
The other brother I don't know I know he still drives with the help of some type of brackets for the gas and brake they have a 3rd brother that is perfectly healthy. Then the other set of brothers I haven't met but I hear they are the same a s me. The only other set were 2 borthers I think back in the earl 1930's-1940's or something like that I heard they lived into there 80's. I don't know much more about them.
I think the most powerful tool we all have is the computer and to get the word out more and more and not to be afraid to ask for help. Nor to ask questions and send emails to politicians, Researchers and medical personal. We need to do this and keep each other updated. We all live in different parts of the country and all have a story. But at the end of the day we will all need help, freinds, support, medical needs and finacial needs to live a good quality life. I just don't think enough people understand as they see you in one light healthy and walking and the next in a wheel chair. It goes back to that saying judging books by covers.....
So many go through this with family, wives and others on there own. |
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Any questions feel free to contact me. |
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