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Update on my Myositis on the heart.

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Posted 3/3/2007 8:03 AM (GMT 0)
Well, I hope all is not doing too bad,

This is a rare disease so I thought I would post a little info to let anyone outhere who has it or gets it...some of my expierience with it.

I went to my cardiologist appt. today and she said that I still have the myositis on the heart.  She said it is a waiting game now..to see if there is any damage to the heart muscle. I am still having symptoms. She said it's like a cut that heals, some heal and leave a scar, and some don't. She said it could take a few more months before I actually find out the outcome. I have been having heart palps everyday now since the beginning of getting this. They get up to 154 a minute. In the meantime she wants me to wear a heart monitor for a week to see if the arythmias(Spelling) are normal or not. She can't put me on any meds for it right now, because my blood pressure is too low. But if there is abnormal arythmias (spelling...brain fog) then she will have to put me on something. Another bummer is my cholesterol levels have been so high. She put me on a med to lower the cholesterol back in December that caused me to have myositis in the other muscles. Every muscle in my whole body was affected. So out the door with that. Then I did my own research and found out that the steroids can cause a rise in your cholesterol levels and in a very short time. I have been on them for a year now. But I have to be on them until I get through this nasty flare. Rhuemy wants to put me on Methrotrexate along with the enbrel I am already taking...I hope he hurrys up because I want off the steroids.I really think that they are affraid to treat me, and they don't know what to do. I am tired of them sending me these letters telling me to WATCH YOUR CHOLESTEROL DIET. I have been, that's what made me research. If anyone has any questions I will be glad to answer. I won't pretend  that I know everything thing about it, just MY expirience with it.

Anyway thanks for listening to my rant.

And Blessings to you all,

Lori

Posted 3/8/2007 10:34 PM (GMT 0)
Very educational and scary.    Are you saying that a choelestrol med caused this?   I have to take something because I build choelestrol w/o eating much except Boost.  A fact I can't change since it's like an auto function for me.   I haven't looked back to refresh my brain on your orginal post.    I am aware of some of the RA meds and have friends that had problems with them while I was on Arthritis section a couple of years ago.   I am so sorry your having do deal with this.  I guess I am wondering why the doctors treating the RA, who knew what reactions might occur, didn't educate the other doctors.  I am understanding this correctly I hope.  I know I take too much in meds from heart/stroke situation, but I haven't taken the RA meds or steriods.  A couple of months ago my m.d. gave me a steriod shot because of a sinus thing and I didn't realized what the nurse was doing and I am still displeased about one shot. Grrr!   I see my heart doctor next week for a checkup and hope to get off some meds, but not likely.   I am sure the doctors aren't sure what to do...it's a "wait and see" process in complex cases like yours.  Still processing the doctors and meds situation.  Good luck with this.  The information will help someone.   All the best, Annie   
Posted 3/9/2007 7:59 AM (GMT 0)
Hello AnnieInOz,
I don't mean to scare you but this is what happened to me. I was already having pleurisy and a month after that I was diagnosed with pericarditis and vasculitis, (dates are in my signature), then my cardiologist put me on a cholesterol lowering drug, 12/27/06. I had been battling my cholesterol levels being too high which I never had before the steroids. She said that the sac around the heart was so inflammed that the inflammation moved onto my heart itself (causing the myositis on the heart, diagnosed on 1/15/07). Then during this whole month of January I was unable to walk. I was so weak..I was even too weak to eat, drink, swallow and talk. And the pain was pretty bad. I called my Rheumy but he was no help. I knew something was wrong, so I thought to weed out my meds to see if it was caused from one of those. So I started with the last one given to me,(the cholesterol lowering drug), I didn't take it one night I felt a little better, the next night I took it, bam I was sick. So in the morning I called my cardiologist and told her. She said to stop it immediately and go to the er. Well they ran bloodwork and sure enough it was the med., it gave me myositis in the muscles of my whole body. I was in shock. She said that the RA caused the myositis on the heart. Then two weeks later it's in my whole body...hmmmn?? For some reason I'm not buying it! So now my cholesterols are out the roof. I can't take anything to lower it..I'm having palpatations, which I never had, can't take anything for that, so I am still waiting for the haulter monitor.. I did research and found alot of people have been through the same thing. So for some, they may be lucky, unfortunately I was not. I still have problems with the muscles..they did hurt before but not like they do now. I am really frustrated with this and very upset, and if this med did do this damage to me and especially to my heart, then I want people to know..and to be very careful. The very first symptoms ..get to the ER. I was only on it for 1 mo and 1/2. How long have you been on your cholesterol med? Just listen to your body. Thank you for your response. I hope all goes well with you.
Lori
Posted 3/16/2007 1:20 AM (GMT 0)
hey swan.. I just saw my heart doctor and we didn't change any meds.   Since my heart attack/stroke was two years ago, I didn't push anything.  I was having a fibro fog day to be honest and didn't sleep the night before.   I have been using drugs like Lipotor for 1 year and I switched to a cheap form of Zocor.  Lip was only 20 mg. and Zocor is 80 mg.   No...the fibro doesn't help.  Ouch!!   I have no recourse but to use the drugs.  Hopefully I will walk out some pounds now that's the weather turned warmer.   For me to have a chance of keeping on...I have to keep off weight and build muscle.  My body builds up triglycerides so fast I am on the high scale again.  But for me to lose weight....I have to stay on about 1000 calories a day.   I am pumping myself up to go back to that.   It's not easy.....I can't believe I let myself gain 10 pounds.  Grrrr!!   My genetics aren't helping this cause :)   I am thinking about something from the frig as I am writing.  Applesauce?  Ugh!  I could use cinnamon on it.  That might work.   Do hope your better.  I glad the doctor caught the problem to be honest.   Since I come from a family that has severe RA, I never underestimate what it can do.  Auto immunne is tricky.  I did react to "protimine" after my heart attack and had a life-threating stroke.  A normal drug used for heart surgeries.   I am one of those people that "react".  No one saw it coming (except my heart doctor, she had seen that reaction one time).  Got lucky there.  Is your body still trying to adjust?    Why wouldn't you be afraid after that experience.   
Posted 3/16/2007 6:36 AM (GMT 0)
Oh Annie,

Thank goodness for you,

Boy you have been through alot I see. My goodness, the strength you must have...what a blessing.

It was the zocor that I was taking and only 20mgs. for only 1 and 1/2 months. I think that since you have been on these for that long you are one that it will not affect. I am doing so much better now. It may not affect all, but I do know that it does affect some. As for me I think I will be able to get my levels down by myself. Oh by the way they still have not sent out my haulter monitor...oh well! I'm not going to worry about it.

They did lower the prednisone and I have a bit more energy now. The Fibro..that's why I was so puzzled with this. I was thinking..my gosh I am really getting hit hard but when it was affecting my muscles to my throat and so on.. I thought this is too much, I really thought I was going to die if I didn't figure out what was going on. I am so glad I did..whew!!. I normally weighed 125 and that being after having my seven children, I have gained a whopping 50lbs. since I got sick. But I have been in this aweful flare since July 06. and it really knocked me on my butt. I have alot of work to do. I guess I am going to go to the Organic shopping center and get my food. I am sorry that you can not eat too much, I mean with having to drink the boost and all. I also come from a family of autoimmune diseases..my mother was crippled from the RA. (She passed at 45) and I have two sisters that have it also and they have deformities. And half of my brothers and sisters have thyroid issues..I have 5 brothers and four sisters. Wow, see I am so affraid of meds now. I trust all the old ones but not the new ones. I'm sorry you had to have a stroke from that meds..It's terrible. Gosh, well I wish you well...

Thanks for your reply,

Mant Blessings to you!!

Lori

Posted 3/17/2007 11:05 PM (GMT 0)
It's good to be aware of meds. I think being a fibro, I have come along with several dysfunctions that change through the years.  Or add up?   The heart problem for me is very typical considering my age..62 when I had heart attack.   I use the Boost for some enery building muscle.  A healthy way to lose weight.   I am so happy your getting back some energy.  It only takes a bit to ease some worries, doesn't it.  Your myspace link is awesome and that word is being over-used, but I think that's the right word for it.   Have a great weekend.  Blessings, Annie
Posted 3/18/2007 4:39 AM (GMT 0)
the disorder is called Rhabomyolysis and it feels just like fibro.

BUT there are lab tests for Rhabomyolysis that will tell if that is the problem.

If the lab test come back neg- it is best to stay on statins as most people with fibro are at higher risk for heart attacks.

If you must go off statins there are a few non statin drugs that may help keep your lipid levels down. But they dont work very will.
Posted 3/26/2007 6:40 AM (GMT 0)
Annie,
Sorry I haven't responded for so long.
I think I am going to give the boost thing a try myself. I did gain alot of weight with taking the prednisone. I am sort of going through this thing where I am almost affraid to eat anything.

Augoldminer,
Thanks for the info,
I was tested and what they told me was that it was drug induced myositis in the body. They said the myositis on the heart muscle was caused from the RA. My cardiologist was not comfortable with putting me on any other meds for that because I have so many health issues right now. But maybe in time.
Thank you both
Lori
Posted 3/30/2007 2:36 AM (GMT 0)
katelynn,
Welcome to healing well. You will find some pretty awesome people here. I'm so sorry you are having heart problems and on top of that the fibro. I too have and Fibro and the heart issues..and also I have severe problems with NO SLEEP!!!. I have never heard of the heart problem you have but I will research it on the net. There is another forum here just for people with Fibro. And really nice people. There is so much information in there..such as symptoms. And people with their very own experiences with it. I had drug induced Myositis. And it was very painful..I still have some side affects from it but oh well at least it's better. I still am dealing with the Myositis on the heart muscle..but waiting to see if there is any damage..any way hope you drop by again..
Lori
Posted 4/12/2007 5:13 AM (GMT 0)
Hello katelynn27,

I think when I had the pericarditis it was just very inflammed, so inflammed that the inflammation moved onto the heart muscle itself. That turned into Myositis. Inflammation of the heart muscle. I am wearing a holter monitor for 30 days to see if there is any damage. Myositis can cause damage to the muscle and even tissue death. I still have alot of symptoms and really fast heart rates. So I am hoping that it is just trying to heal because these symptoms are getting better. I am actually having some good days now. Was it your disease that caused you to need the surgeries? Gosh I sure hope someone pops in to share some info with you. I have not ran into anyone yet with the myositis on the heart...

I'll keep you in my prayers. Many Blessings to you,

Lori

Posted 4/14/2007 7:48 PM (GMT 0)
Hi Katelynn,  Hang in there and hopefully someone will come along who will be able to relate to what you are going through.  I can on some level with the pacer...I got mine Sept 2005 when I was 31.  My low heart rate is caused by an autonomic disorder called Multiple System Atrophy which is closely related to Parkinson's.  I also have had Multiple Sclerosis for 6 years, diagnosed when I was 27.  So fatigue and cognitive problems are close friends of mine.  Anyway, enuf about me..boring! tongue

Keep posting we are always here...

Posted 4/17/2007 3:24 PM (GMT 0)

Hi Katelynn, yes we both have been through hell havent we? eyes    I am 33...going on 34 in September.  Funny how that always seemed old now it doesnt but I feel it...lol!  I have had a few problems since I got my pacemaker.  6 weeks after implant I had to have a revision done since I ended up pulling the leads out of my heart during one of my syncope spells.  That wasnt much fun as I wasnt totally out during the procedure and felt the whole thing...there was alot of scar tissue by that time.  It was pretty tramatic.

My problem with it now is that the pocket for it is too big and the pacer moves and flips in my chest which is twisting the wires.  So eventually I will have to have another surgery to fix that...my cardiologist is keeping an eye on it and I have chest x-rays pretty often to make sure that the leads are still in place and that it has enough slack left.  It is kind of a pain in the butt since I finally just got over the anxiety of worrying if the leads were in place...now I have something new to worry about.

I hope you have a good day :-)

Posted 4/18/2007 2:45 AM (GMT 0)
So sorry katelynn,
Just been feeling pretty tired lately. My gosh you have been through alot!! Unfortunately I am still wearing the holter monitor..one more week. My daughter is getting married this Friday in Laughlin, so we have been busy with that too. I hope you are feeling well. So the palps can be caused from illness to the heart? Boy I sure hope mine go away. They have been getting better. Thank goodness!!. Well talk you soon..Take care of yourself.
Lori
Posted 4/18/2007 9:57 PM (GMT 0)
Katelynn,
My grandson was born with Wolfe Parkinson's White. He was ten days old when we just knew something was wrong with him. We took him to a regular doc. and he said he was fine. The next day we took him to a very good teaching hospital and they literally grabbed him from my arms. He had severe metabolic acidosis, enlarged lungs, kidneys, heart...they didn't think he was going to make it but he was too tough, he wanted to live. He spent six weeks in nicu. They didn't think he would be able to use the restroom or even be normal. But today he is awesome. You would never know he was so sick. about a year ago his heart rate was up to 300 beats a minute so they finally did his surgery. He is now ten years old and fine. He is our miracle. We were very blessed with him. By the way I have identical twin daughters. They are 26 now. Thank you for the blessings for my daughter's wedding. I just hope I am not too tired. You take care and I'll talk to you soon.
Lori
Posted 4/22/2007 10:28 PM (GMT 0)

Hey Katelynn,

I didnt know that was what tapping was...and yeah I do sometimes do that nono  . Caught I am!  I have lost some weight since I got the pacemaker so now it is much more prominent in my chest.  You can even tell where the leads sit...so that has been bothering me some.  The surgeon in St. Louis wasnt so careful to follow my cardiologists initial cut so my scar is kinda obvious.  Some guy working at the gas station last summer when I was wearing a tank top asked me if I had been stabbed!

I see my Cardiologist next month so I will ask him about placing it in the stomach when/if I need an upgrade or I have to have this one repaired.  He just better make sure I am out...I dont want to feel a thing for at least a week tongue

Posted 4/25/2007 4:17 PM (GMT 0)
Good morning katelynn,
Oh so far my grandson is doing just fine. And I hope he remains that way. So far the docs think he won't need another operation. Wow! I'm sorry to hear that your mom has WPW too. It's an aweful disease. We had to take his pulse every 20 minutes for years. That was a pain in the butt. Yes the wedding is done..I had a wonderful time. I was really scared to go because I have been so sick..I also won some money...51,855 nickels!! I am on my last day for this holter monitor and boy I can't wait to get rid of it. 30 days is a long time to wear this thing. I haven't had to record for a week now. These symptoms I am having are still here. I still get the dull ache in the heart and the palps but they are getting further apart. They put me on Norflex for the muscle spasms and let me tell you they knock me on my butt. Well we will keep in touch. Take care.
Many Blessings to you.
Lori
Posted 4/26/2007 12:43 AM (GMT 0)
Hello katelynn,
I have missed you to!!
I'm feeling alot better today, thank you.
Wow!! you sure have alot of info. I'm sure it will come to use to someone in need of answers. And you sure have been through alot, my gosh. You must be a very strong person.
I was lucky the myositis is on the front of my heart so I actually was not in heart failure because of it. If it were on the side of the heart, it would be a different story. Are you going to need more operations? Did your mom have to have any operations from the WPW? Sorry for asking so many questions. Yes we will keep in touch. I pretty much check this wonderful site everyday. You take care and I'll talk to you soon...God Bless you.
Lori
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