I have Lupus and my ANA is 1:1280. It has been active for a year and a half and we have not been able to get it under control so far. I have had to go to the hospital twice in the last two months. Both times I stayed four days. One time my sodium and potassium were extremely low and the second time my heart rate was around 170 when I stood up or walked a short distance (any type of activity). After three days and many tests the cardiologist said my heart was very strong but I have vasculitis. He has put me on digoxin and motoprolol both of which I have to monitor and take smaller doses of because the dose he wanted me on lowers my blood pressure too much. I still have high heart rates at time, usually when I am moving around. My Internest has me on 10mg. Prednisone, Celebrx and 50mg. Imuran. The Cardiologist tells me this will go away when the lupus is under control. I am concerned because he originally said I was fine and was releasing me from the hospital and then my Internest came in and said you can't go home with such a high heart rate. Somewhere inbetween the two and the Cardiologists P.A. vasculitis came up. It has been since January 13th. and I am still unable to do almost anything other than sleep or sit around. I am worried they missed or misdiagnosed something. He didn't see the vasculitis in the catscan or the unltrasound. I feel they are guessing. Is vasculitis common "around the heart" for lupus patients? I can't find but one article online when I google vasculitis+heart+lupus and it doesn't sound good. My family is pushing me to get more opinions. Should I get another opinion? Does anyone know anything about this.
Joni, you have some serious things going on. But I want you to remember that stress can cause a flare. I know in your situation it would be hard to worry, but for your own sake you have to put your trust in God. Worrying is not going to add to anything. I know I am praying for you to get well. I'm praying for YOU! Because I know that depression is one of the symptoms. It's not just because we are going through a hard illness. It's a symptom.
Vasculitis of the heart is very serious. I'm glad you are out of the hospital. Start with what you can be thankful for. If you have a good day, get excited about that. Even if you have a few bad days, just confess that it's just a day...tomorrow will be better. Desperate people do desperate things. After reading your post, I am almost sure I was where you were in the hospital...except I never went to the hospital. A year ago I had everyone of your symptoms. I thought I was not going to make it. But in a whisper I told my husband who was crying...tomorrow will be better. It actually took several days to see a "better day", but I did. I got well enough to go to the dr and get some predinizone. This was before we actually knew what was going on. I'm sure I was not as serious as your case, but it was close.
I'm so sorry that you are going through all of this. I hope you are feeling better.
Praying for you!
Thank you so much for your prayers and support. I am also praying for you both to be healthy and well. This time around has been scary because like you said Karajo vasculitis of the heart is rare. it took them three days to figure out what it was and then they started me on IV steroids and Imuran along with two heart meds to help control my heart rate. I am still on all of them and I am trying to rest but that doesn't always happen either. We had a death in the family this past weekend and I went to the wake tonight. Tomorrow morning is the funeral and I must go. I am riding with my brother but I just can't wait until it is over and I can come home and crawl in bed.
My new symptoms are swelling on the front of my neck. I went to my internest yesterday and she has ordered an ultrasound of my neck for Friday. I am afraid from talking to others on here and researching that it might be Hasmimotos Thryroiditis but of course I will have to wait and see. I have this constant feeling of choking that gets worse as the day goes on. It is late right now and I am going to have to go to bed just because I can no longer stand this feeling. I pray I don't have nodules but you can see something sticking out on the front of my neck. When I wrote this post I was upset about my heart andnow I have this new neck thing. I just don't know how much more of this I can stand. I'm sorry if I sound like a baby. I know both of you have your own problems going on. If I sat here and said all this to my boyfriend right nowit would just get him more upset than he already is. I just have to conplain to someone. Thank you for listening. My sed rate is still high which means inflamation. I got the results back today. I hope that I just have some inflamation on my thyroid and not nodules. Well, I can't stand this feeling anymore. I have to go to bed. Thank you my friends for being there and listening to me cry like a bay to you. I am here for you as well. I am saying an extra prayer for you both tonight when I go to bed.
I personally understand your concept. I have used vitamins and herb and nutrition on several occasions. But I have to ask...have you had to deal personally with the things that Joni is dealing with. She would have died w/o medical intervention. The natural way is best, but doesn't always work when the disease is raging. I personally am fighting lupus with natural things, but I am also on Plaquinel. I felt like I was dyeing w/o it. I don't think I would still be here w/o medical intervention.
I thank you both for your posts and I must say if I thought I could just get off the medications I am on and do something natural I woud do it in an instant. I know without a boubt if I stopped my medications I would be back in the hospital in a psychiatric ward having them force feed to me. lol I went to a very well known wellness doctor a almost two weeks ago and she has me starting on fish oils and suppliments that will not interfere with my "traditional medications". She said herself (and she is also an MD) that if she took me off of all my meds I am now on I would end up in the ER again. I am thankful to have found her. A friend of mine has been working with her for four years and last week was told her ANA is negative. She has not had the problems I have had though so I don't know if I can achieve that but I want to. Right now, the steroids I take are keeping my vasculitis from strangling (literally) my heart and I need to stay on them until the Imuran kicks in which could be a few more months or less I hope. It stinks to have to suppress your immune system because it is unnatural to do so but when it is attacking ones own body our choices are not great. After I am over the vasculitis I intend on getting on bio-identical hormones instead of the premerin I have been on for years and I am going to take plenty of vitamins and fish oil and whatever she tells me to take as long as my doctor (who is openminded) agrees it is safe. It's just all the waiting to get better. This time was difficult. I thought all the fatigue and pain I have been in for the last year and a half was bad. I would gladly take that back over having it attack my heart like this. I have had a few times where I have gotten a bit depressed but never like this last time after getting out of the hospital. My boyfriend loves me so much and I am so blessed to have him. I believe God sent him to be my angel and I want to spend many many years with him. I have to be here for him as well. He is very afraid and I don't know how to make him feel at ease. All this has been very difficult lately and I get sad. Sometimes I feel what am I here for but then it usually passes and the sun rises again. Once I can start getting off this couch more I will feel like I am living again. Right now walking in the kitchen is sometimes scary because well like Saturday I almost had to lay on the floor. I didn't think I would make it back to the couch. So who wouldn't be sad?
I will take a look at the site, thanks. I can't remember if I mentioned but I am seeing a wellness doctor and I have greta hopes of working with her in the future. right now I have to be careful, mostly because of my heart issues over the last few months. Her name is Dr. Kimberly Schroeder and I am not sure how much is online about her but a Dr. she trained under is Dr. Holtze and he is in Houston (near me) and has written books which I know can be found on Amazon. I look forward to working with her and trying to create a healthy enviroment inside and outside of my body. I hope that make sense. She has seen my friend for four years now and my friend Lorrie last week was told her ANA was negative for the first time in 10 years and that she is in remission. When I said creating a healthy enviroment inside and outside of my body I meant that I have also started using natural cleaning solutions in my home and on my body. Kiss my face has great products for your body. I use a soap that is made of olive oil and salt - only. It doesn't have the fragrant smell of other soaps but it does smell clean and it is healthy. Plus I hear in Greece women but olive oil on their skin daily. Not only is it a natural anti-biotic but it supposedly helps their skin look younger. Anyway, Kiss My Face products are my fav. and all natural products for cleaning. recently I read that glade plug ins and those items are bad to breathe a lot of too. I was upset because I love having my house smell really good. I am hooked on those things. I will have to cut back on them I guess. LOL Anything to be healthy.....
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