Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Diastolic Dysfunction


  • Please log in to reply
10 replies to this topic

#1 Patty

Patty

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 306 posts
  • Location:N.W. Connecticut

Posted 22 February 2007 - 02:21 AM

I have limited scleroderma and dermatomyositis. I was told after my heart cath that I have diastolic dysfunction. My question is, does it matter what caused the diastolic dysfunction in how its trested? I am on steriods and they are making me huge and I know that is not good for my heart. My BP is higher then it used to be and I know thats not good at all. I would love to find out more about meds for this besides the steriods. I would neeed a med that would not make me sick as I am in the middle of an adoption. Any info on this would be great!

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#2 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 22 February 2007 - 04:44 AM

Patty,
The primary information that I found was that the best treatment for diastolic dysfunction was to treat the underlying cause. Hypertension (high blood pressure) being one of the primary causes. So since you do have high BP are you taking anything for it? DD can also cause and be further effected by atrial fibrillations, so that needs to be treated as well. I am currently taking a drug to reduce my Afibs and it's the one drug that I have no noticeable side effects, plus it does the trick. I didn't find anything that mentioned steroids as a treatment for DD.

I'm sending you a link with information in a private message.

If I find anything else I'll send it to you. Hope this helps.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 Patty

Patty

    Senior Silver Member

  • Topic Starter
  • Members
  • PipPipPipPipPip
  • 306 posts
  • Location:N.W. Connecticut

Posted 22 February 2007 - 06:12 AM

Janey,
Thanks so much for the fast reply! I confused myself rereading my post. I think my question should have been, is there meds for the dermatomyositis that won't hurt my diastolic dysfunction. I know that you had mentioned to me in another post that you do the IVIG treatments. I dont think that would work fo me because I dont have anyone to watch the baby while I get the treatment. I know there are pills out there for DM/PM, just not sure what ones are best for all my things that I have going on.

How are you feeling? I know that you had a hard time not too long ago. I hope that you arre feeling better and are back to yourself.

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#4 KELLYB.

KELLYB.

    Bronze Member

  • Members
  • PipPip
  • 28 posts

Posted 22 February 2007 - 08:42 AM

Hello to everybody out there. Hope you all are coping as well as you can through this cold season. I was reading this message and wondering a little about DM/PM. I was diagnosis with Lim. SSc & CREST about 3 years. ago, but been having quite a few new things going on lately. I don't see my Dr. til the end of March - but want to go in and NOT be blind sided by him telling me I have yet one more disease. :( So I guess my question for anyone out there is what tests are done to determine if you have DM/PM. I read that a muscle biopsy is done, if so, is that a painful procedure? What were you feeling before being diagnosis with DM/PM? I am thinking to myself that I have one or the other. After living with this disease for a few years, you get to know what feelings are normal and what's not. I am trying to take advantage of all this wonderful info available here, and would appreciate any input on this. Thank you all.

kellyann

#5 Patty

Patty

    Senior Silver Member

  • Topic Starter
  • Members
  • PipPipPipPipPip
  • 306 posts
  • Location:N.W. Connecticut

Posted 22 February 2007 - 09:36 AM

hi Kellyann.

For me I was told I had DM but the doctors just looking at me. I had a skin biopsy done and it was not painfuil at all. I got 2 stiches and no trouble at all except for a new scar. The doctors knew it was DM because of the rash I had. It was on my upper chest, back, shoulders, hands. I also was very itchy on my back. I was sleeping with a back scratcher in my bed at nght it was so bad. I also have skin color changes on my face. That was really the first sign but I didn't know it then. I thought it was from a sunburn I had gotten years ago.

I have the upper leg weakness now, stairs are hard fo me to climb but I have to as I have bedrooms on the upper floor of my house < sigh>. Also its hard ot stand and do dishes so tomorrow I am buying a bar stool for my kitchen to help me resta nd still do things that need to get done.

What sxs do you have that you think you could have DM/PM? I sure hope that you dont have it.

Please let us know what you find out.

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#6 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 22 February 2007 - 09:55 AM

Kellyann,
I have PM which is DM without the rash that Patty has. I also have sclero with minimal skin involvement (only my fingers). For me. the initial symptom of PM was muscle weakness. PM affects the muscles between the knees and the neck so I lost my ability to go up stairs, had a hard time holding my arms up to wash my hair and it became difficult to raise my head up from the pillow in the morning. It also affected my chest muscles which made it difficult to breath, especially laying down. The initial diagnosis other than these symptoms were a bloodtest (CPK or CK) and a muscle biopsy which was taken from my right thigh. A local was used so I didn't feel a thing.
Here is the ISN page on PM/DM

Once I was put on methotrexate the PM symptoms improved and I regained some, but not near all of my muscle strength. Due to a recent health event, I'm back to square one, but seeing improvements everyday.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#7 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 22 February 2007 - 10:09 AM

Patty,
How much steroid are you on? My rheumatologist is very hesitate to put me on steroids because of the possibly of renal failure with scleroderma. You should have seen his face when I told him how much steroids they had me on in the hospital (100 mg/day!) Then the discharge doctor wanted to keep me there and I said NO! So the rheumatologist put me on a fast reduction and I'm already down to 10/day.

When I was diagnosed with sclero/PM I was put on a increasing dose of methotrexate and 5 mg/day prednisone. That combination really stopped them both in their tracks and slowed both diseases down. I'm not sure how MTX works for DM. Of course a couple of years later, I plateaued and the MTX wasn't doing good anymore and new symptoms arose. Once I got the lung problems, I came off the MTX and now we're trying to find an immunosuppresant that I can handle. I didn't handle either Imuran nor Cytoxin very well. Here is our page on DM Treatments.

I'm doing better. Thank you for asking. Yesterday my PT and I walked about 1/4 miles (with my oxygen), but it was 1/4 mile so I was very pleased. We did have to stop and smell the roses a few times, but it was a beautiful day! Everyday I get the strength back to do something else so that's nice. I did just got back from getting my pacemaker checked and apparently this septic shock event has started my AFibs back . I had one that lasted 18 hours yesterday! So I see the cardiologist on Tuesday. If it's not one thing it's another. UGH! Oh Well - this too can be addressed. I'm sure he'll just up my meds since I'm not a maximum dosage.

Hope you find another treatment for your DM. I don't like the steroids either.

Big Hugs,
Janey

#8 Heidi

Heidi

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 573 posts

Posted 22 February 2007 - 10:58 AM

Hi Janey,

It is good to hear that you are getting better and stronger everyday! I am sure it brought quite a smile to you to be able to walk a 1/4 mile. That is great news! I am sorry to hear about the A-Fibs starting back up. I hope the cardiologist can get those back under controls with no ill side-effects from upping your meds.

Warm wishes,
Heidi

#9 KELLYB.

KELLYB.

    Bronze Member

  • Members
  • PipPip
  • 28 posts

Posted 22 February 2007 - 08:14 PM

Janey & Patty, thank you for responding :) I am wondering if by "rash" you mean the Telangiectasia (sp?)Ive had symptoms of Lim SSc as far back as 9 years, and NEVER have I felt so muscle weak. By that, I mean, I have felt so weak that I couldn't get out of bed... but now I feel like holding my dinner plate is way heavy, doing my hair (which is rare these days), is just way too exhausting for my arms. I also have an upstairs, which is where my only shower is, as well as my kids rooms. Sorry to say, that most days, I kill two birds with one stone and shower when I HAVE to go upstairs to put them to bed :( Some days I can't go up at all... it's hard to have to try to explain to my 4, 6, and 8 year olds that mommys "sick" today and I would like them to be big boys and tuck themselves in. I think that is one of the hardest things for me to deal with, is the disappointment I think they feel sometimes. My oldest is starting to realize a little more now about diseases and sickness, it is just so hard to feel like they deserve so much more and there's not a thing you can do about it. When I was first diagnosis, I went through the most depressing stage of my life, as I'm sure a few of us has. After I realized it's too depressing to be depressed, I realized that I had to be as strong as I could... not for myself, but for them. OK, yeah...this is probably the ONE thing I get emotional about, my boys. Out of ALL the horrible things this disease has put us through, my worst fear is not being there for them. I hate to think to myself that 10 years from now, they will be worrying about me and my health, rather than the important things like high school dances, and which one of my handsome boys will have the cutest date :D I have also thought on the other hand, this will teach them a thing or two. They will realize along the way,maybe, that life is not to be taken for granted. That there are so many things to be grateful for, even though it seems they had the short end of the stick at times. All I know, is I can try my best to make them happy, right? If I do that, that's all I can do. Blah, blah, blah...there you have it. Kids, you gotta love em right? I know I do. If I was smarter than this computer I would post some pictures of these beautiful boys...I will figure it out one day.

ANYWAYS, what was the topic..............DM/PM, yeah, major muscle weakness, not like ever before. Especially upper arms and upper legs. I also have become pretty sensitive to the slightest bumping into something, or when my kids poke me, or when someone grabs my arm or shoulder. Are there any other suggestions as to what it might be if not DM/PM? Thanks ahead for any responses. Also a big thank you for just being there to listen, or read. Just knowing there are so many of you out there who understand makes me feel better :D

kellyann

#10 Patty

Patty

    Senior Silver Member

  • Topic Starter
  • Members
  • PipPipPipPipPip
  • 306 posts
  • Location:N.W. Connecticut

Posted 23 February 2007 - 03:42 AM

Hey Kellyann,

You sure sound like me!! I won't shower unless my bf is home because I am just to weak to stand alone for long and I do not want to take another tumble as I am still on pain meds from the last one! I have a 2 year old I am about to adopt so I understand how you feel about the childrena nd you not able to do things for them sme days. I hope to get control of this so the baby has a normal life. thats the point in me adopting her in the first place. (shes my grand daughter.)

You do sound like PM/DM but I am not medical so I would strongly suggest that you talk to your dr about this and make him to the blood test that Janey spoke about. Maybe even the biopsy. I didn't have a muscle biopsy. I guess the rash told them enough along with my sxs. Janey gave you great things too look at and if you need more info I have some sites about it book marked and you can prizate msg me for them.

Good luck and please keep us posted on this.

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#11 Patty

Patty

    Senior Silver Member

  • Topic Starter
  • Members
  • PipPipPipPipPip
  • 306 posts
  • Location:N.W. Connecticut

Posted 23 February 2007 - 04:03 AM

Janey,

I am on 20 MG a day ( 10 2x a day). I know that some people have much higher amounts they take but my body is not doing well on this and to me its a toxin I do not want in my body any longer. I have no idea how you handled the 100 mg a day!! You really amaze me Miss Janey!

Thanks for the link to the dm med site. I am thinking of asking for Methotrexate. I am calling my insirance today to see if its covered and if so I am demanding it and a taper from the prednisone. I can't stay on it any longer. I really look like stay puff! lol

I also worry about the renal failure because my BP keeps going higher then it should be. some time I take it and its normal then I take it and its 148/ 95 or what ever. I was told I should never have a bp higher then 140/90. anything over that I was told to call my general practitioner. I have called and gotten no replies about it being high.
Oh well....


WONDERFUL that you walked 1/4 mile!! Thats the best news I have heard in a long time! Keep up the good work!

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.