Glojer
01-21-2007, 10:08 PM
My husbands story is like many who suffer from dermatomyosits, it took a long time for a diagnosis. He was finally diagnosed with an ER visit. My question though has anyone ever lost the ability to swallow with this disease? My husband had to have a gastric tube put in to be able to get enough nutrition. Not only did his leg and arm muscles get very weak but his neck muscles weakend and he couldn't hold his head up very well and finally his throat muscles were so weak he choked on all his food and finally couldn't swallow without aspiration. His rash has been gone for about 6 or 7 months but he still battles the weak muscles and other complications associated with this. He is on a host of medications, he is now moving down to 5mgs of prednisone a day but at one time was on as much as 60mgs. He also gets a 30mg methotrexate injection once a week. Any input anyone has on the throat and swallow problems would be appreciated. This is such an awful disease, I am sure my husband being on chemo did not help when he was finally diagnosed. His immune system was destroyed by the chemo and the myositis really took hold but he is cancer free now for a year but still battling the muscle weakness.
Thanks Glojer
Thanks Glojer
Sponsor
tmjtrans
01-22-2007, 03:08 PM
I am sorry for the problems your husband is going through, and I agree this is an awful disease. I was diagnosed with DM in August and did have difficulty swallowing, although not to the degree of aspiration. In my situation, and we are all different with this disease, as I decreased the Prednisone (was on 80 mg daily for several months) the swallowing returned. I am now on 5 mg of Prednisone daily and 25 mg of Methotrexate injectable weekly. Thankfully, I no longer have the horrible muscle weakness that I had before. Hopefully as your husband decreases his Prednisone that will help him too!
Glojer
01-22-2007, 06:44 PM
Thanks for the reply tmjtrans. He was hospitalized last fall with what they said was aspiration pnuemonia because they couldn't find another cause. His lungs though filled with multiple blood clots and he also had clots in his leg. It is hard to know if it is the side effects from the chemo (which ended a year ago) or from the DM and the medications used to get it under control or from other medications used to control other health issues that continue to pop up. It is encouraging though to hear your throat problems did improve as you moved down on the prednisone. Thank You!
Glojer
Glojer
Dharlee
01-23-2007, 02:54 PM
I visit another board as well as this one. The folks there have talked about this problem a lot on that board and I am going to quote one man in particular:
"I believe that weakness comes on gradually for most but more rapidly for others. It is also related to your general strength or weakness. Those with dysphasia often have more problems at the end of the day when they are tired. Swallowing is such a complex action of voluntary and involuntary muscles that it seems amazing that we can swallow at all.
Swallowing generally improves as your disease comes under control and your strength returns but some patients require speech therapy to recover as I did. A gastro tube was necessary in my case because I could not swallow anything (not saliva or even water) for several months. "
I never heard of speach therapy helping but evidently it can and does. I hope this helps.
Hugs,
~Dharlee
"I believe that weakness comes on gradually for most but more rapidly for others. It is also related to your general strength or weakness. Those with dysphasia often have more problems at the end of the day when they are tired. Swallowing is such a complex action of voluntary and involuntary muscles that it seems amazing that we can swallow at all.
Swallowing generally improves as your disease comes under control and your strength returns but some patients require speech therapy to recover as I did. A gastro tube was necessary in my case because I could not swallow anything (not saliva or even water) for several months. "
I never heard of speach therapy helping but evidently it can and does. I hope this helps.
Hugs,
~Dharlee
Dharlee
01-23-2007, 02:56 PM
I copied the URL to that board here:
http://www.myositissupportgroup.org/PM/index.html
It really helps to talk to others who know what you are going through. This is a disease that affects everyone, not just the victim.
http://www.myositissupportgroup.org/PM/index.html
It really helps to talk to others who know what you are going through. This is a disease that affects everyone, not just the victim.
Glojer
01-24-2007, 01:25 PM
Thanks Dharlee, my husband has had speech therapy for months. He had it last summer after the g-tube was put in and he really improved to the point of being able to eat things like bacon cheeseburgers. Then for some reason he started apirating again and after the 45 days in the hospital his throat was completely gone again. So he is back doing speech therapy and I have ask that he can continue with it for an extended amount of time to be sure he doesn't relapse again. Thanks again!
Glojer
Glojer
Dharlee
01-25-2007, 01:35 AM
I hope he gets better. I think that the swallowing problem would absolutley be the worst of all. I hope you visit the link I posted. I think it might help to shed some light for you both. This disease affects everyone in the family. And in my humble opinion, the more you know your enemy, the better equiped you are to fight it.
Hugs,
~Dharlee
Hugs,
~Dharlee
Glojer
01-27-2007, 12:28 PM
Thanks Dharlee I found the other site very helpful. I just had a few minutes but I will remember it and check it when I have more time.
gira
02-06-2007, 06:31 PM
I emphathize with your husband and you. I have been diagnosed w/myositis (DM) for 10 years now & have been in & out of remission. The initial symtoms included extreme swallowing issues like your husband as well which caused me to lose a lot of weight because I couldn't eat. At that time I was on 80 mg of prednisone as well as imuran. I found that as my condition improved, I was able to get control of my motor skills and swallowing improved as well. I now am still inflamed at 8000 cpk & improving & am on 30 mg of prednisone & 300 mg of imuran per day. I am still having tbl swallowing only on the right side of my throat & found that some foods (breads,crackers,potatoes w/skins,spicy foods) annoy my throat more so I try to eat softer foods/blander foods. Maybe this may help your husband as well.
Glojer
02-08-2007, 12:31 PM
Thank you gira your advice comes from lots of experience. Yes he has lost a lot of weight but with his gastric tube he can still get plenty of nutrition. He has had 3 modified barium swallow tests, the first one showed the food collecting in his throat the second one showed the food and liquid going into his lungs (aspirating) and this last one showed improvement to where the food is going in the esophagus so he can eat what is called mechanically soft foods but he still has to add simply thick to his drinks to make them necter thick. No thin liquid to drink.
You have been struggling with this for a long time and your success at getting better gives me hope. Thanks you for the encouragement.
Glojer
You have been struggling with this for a long time and your success at getting better gives me hope. Thanks you for the encouragement.
Glojer
Mary1955
08-21-2007, 07:15 PM
:angel: My husbands story is like many who suffer from dermatomyosits, it took a long time for a diagnosis. He was finally diagnosed with an ER visit. My question though has anyone ever lost the ability to swallow with this disease? My husband had to have a gastric tube put in to be able to get enough nutrition. Not only did his leg and arm muscles get very weak but his neck muscles weakend and he couldn't hold his head up very well and finally his throat muscles were so weak he choked on all his food and finally couldn't swallow without aspiration. His rash has been gone for about 6 or 7 months but he still battles the weak muscles and other complications associated with this. He is on a host of medications, he is now moving down to 5mgs of prednisone a day but at one time was on as much as 60mgs. He also gets a 30mg methotrexate injection once a week. Any input anyone has on the throat and swallow problems would be appreciated. This is such an awful disease, I am sure my husband being on chemo did not help when he was finally diagnosed. His immune system was destroyed by the chemo and the myositis really took hold but he is cancer free now for a year but still battling the muscle weakness.
Thanks Glojer
Thanks Glojer
Mary1955
08-21-2007, 07:23 PM
This is the first time I enter since I was just told one week ago that I have DM I'm so worry as I read this horror stories about this that I feel I'm running out of air. Is there any hope for us or are we all not going to be able to swallow, this scares me to death. Is there any type of quality of life with DM please answer me this is too new to me. Please say something.
peacefrog
08-26-2007, 12:42 AM
I don't know alot about this disease, but a family friend has this also. He was about 16 when he was finally diagnosed, and went thru hell and back a couple times. I just wanted to say he is now in college and playing on the rugby team. He has made a miraculous recovery, and tho he continues to need treatment he is living a normal young life. I saw how devastating it is to him as well as his family and I understand the strength you all have to have to get thru. You have my prayers and utmost respect. God bless you!
ashley0211
03-19-2008, 06:11 PM
i was diagnosed with DM when i was about ten years old... I got so weak i had to sit out in gym class and couldnt even manage to get myself up off the floor... I took steriods, fosamax, calcium pills, and all kinds of other stuff... Im 22 years old now and i have a ten month old little girl.. i dont remeber what test"s they ran or anything... so now im trying to gather all my medical records to find out if its possible that my child might get this one day... Ive been in remission since i was around thirteen.. no meds and no problems... but i remember they told me it could come back one day? Does anyone know anybody that got taken off their meds and then had a relapse? im so scared that one day ill have to re live this... HELP
Glojer
03-21-2008, 01:13 AM
ashley, are you still on any medication? The only thing I can tell you is what the docs have told us. That DM is a chronic disease, which means it can flare up again. You have a young strong body now and with taking care of it maybe you will never flare again. I have never heard of it being heriditary. It is an autoimmune disease and perhaps your children will have a more likely possibility to carry the autoimmune gene. My grandmother had an autoimmune disease called scleraderma and when tested my blood shows the possibility of several autoimmune disorders but I don't have them. I hope this helps.
Glojer
Glojer
ashley0211
03-22-2008, 12:12 PM
Im not on any meds now... I still take my multivitamin but nothing else since i was like 13 0r 14... The reason im wondering is that here lately my back wont stop hurting my legs are sore... and it just scares me sometimes... Im working on getting my medical records i know when i was diagnosed they told me it was very rare i was under a case study and all... i was so surprised to find this site with all these people that have the same problem... Thanks so much for your help..:angel: