Question about Dermatomyositis and swallow problems - Myositis Message Board

Glojer · 01-21-2007, 07:08 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

tmjtrans · 01-22-2007, 12:08 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, 03:44 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

Dharlee · 01-23-2007, 11:54 AM

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

Dharlee · 01-23-2007, 11:56 AM

I copied the URL to that board here:
[url]http://www.myositissupportgroup.org/PM/index.html[/url]

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.