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Old 03-11-2010, 07:21 PM   #1
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kinikki HB User
Vasculitis? Pleurisy? Is this very serious?

Hi again, well I went to my new rheummy who is much more compassionate than the last. He suggested to me that I may have pleurisy and vasculitis from the symptoms I have. Right now my insurance is cut off and I really cannot afford anymore tests but after doing some research it does seem that I do have many symtoms that would support this. I was wondering how many others have vasculitis/ nerve damage and how serious is this? I also read that pleurisy usually just runs its course, is this true? Thank you. - Nicole

Last edited by kinikki; 03-11-2010 at 07:23 PM.

 
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Old 03-24-2010, 05:48 AM   #2
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Re: Vasculitis? Pleurisy? Is this very serious?

Yes, Vasculitis can be very serious. Last March (2009) my mother's eye closed. We thought maybe she had Bells Palsy but the opthamologist had her make an appointment for a CT scan and she was diagnosed with Temporal Arteritis, also called Giant Cell Arteritis, which is under the "umbrella" of Vasculitis and so is Rheumatoid Arthritis, Lupus, etc...They are all "immune disorder" diseases. She lost the vision in her left eye and she was put on prednisone to counteract her overactive immune system which was causing the imflamation in her head. The imflamation in her head went away but than she was having problems walking. Bottom line is that the vasculitis was now traveling through her whole body so the doctors were afraid to take her off of her VERY large daily dose of 80 milligrams of Prednisone per day. At one point the doctor thought, due to her urine test (two of them), that she had a kidney infection. It wasn't until a month later after many hours of internet research that I found that systemic vasculitis, throughout the body, can start attacking your organs and many times the urine test will come back looking like a kidney infection. It can also attack the lungs and look like pneumonia. The end result was that my mother ended up getting Pneumonia November 2009, was put on a ventilator in the ICU and when the antibiotics did not help get rid of the Pneumonia, and we were told that she would never get off the ventilator, and her body would basically start shutting down, we (her three children) made the decison to pull the life support (from an alert person who in all others ways seemed healthy). A horrible decision that I never imagined I would ever have to make. She passed away December 22, 2009. It all happened so fast and I was stunned because so much of what I had read said that Vasculitis is very treatable. Most of what I found out was after the fact. The doctor's, although they were good, never mentioned that it can attack organs. I think they knew she had a very serious case and just didn't want to say. Most Vasculitis patients are on 20 milligrams or much less a day of Prednisone. I believe now that it was going into her kidneys and who knows, maybe it wasn't even Pneumonia that she had afterall. I wish I would have done all that research before she ended up in the hospital, but I was just researching side effects of Prednisone etc. I wish the doctor's would not have down played her condition like they must have done. So first of all, go to the doctor even if you have no insurance. It is something you have to do. You will be seeing a Rheumatologist. There were only three in my mom's area and we live in a suburb of Los Angeles! He was swamped with patients so it was very frustratrating. Than she was also seeing a Neurologist. When we got her into the ER the ER doctor asked me if my mother had had a flu shot and a Pneumonia shot. I didn't even know there was a Pneumonia shot. Her two doctors never mentioned either one to us. The ER doctor gave her those shots right than and there. So you need to ask you doctor if that is something you should get, if in fact you are put on Prednisone, because Prednisone depletes your immune system. I have had an uneasy feeling since she passed, that something was not done right with her care, although I do know she must have had a very serious case that now in hindsight I realize had been coming on for some time. We had all put her slower walking and sometimes the unsteadiness with her balance down to her age. So don't let any symptom, no matter how small it seems, get past you. Had it been caught much sooner she may have still been alive today. From what I have read, it is a very difficult disease to diagnose. Good luck to you and don't wait any longer to get medical care. All the articles regarding how controllable it is gave me a false sense of safety. Sorry for such a long reply but there are so many variables with this disease. This is one disease where you need to do a lot of the research on your own so that you can ask good questions.

Last edited by LauraAnn48; 03-24-2010 at 05:52 AM. Reason: misspelling

 
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Old 03-24-2010, 05:54 AM   #3
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LauraAnn48 HB User
Re: Vasculitis? Pleurisy? Is this very serious?

Yes, Vasculitis can be very serious. Last March (2009) my mother's eye closed. We thought maybe she had Bells Palsy but the opthamologist had her make an appointment for a CT scan and she was diagnosed with Temporal Arteritis, also called Giant Cell Arteritis, which is under the "umbrella" of Vasculitis and so is Rheumatoid Arthritis, Lupus, etc...They are all "immune disorder" diseases. She lost the vision in her left eye and she was put on prednisone to counteract her overactive immune system which was causing the imflamation in her head. The imflamation in her head went away but than she was having problems walking. Bottom line is that the vasculitis was now traveling through her whole body so the doctors were afraid to take her off of her VERY large daily dose of 80 milligrams of Prednisone per day. At one point the doctor thought, due to her urine test (two of them), that she had a kidney infection. It wasn't until a month later after many hours of internet research that I found that systemic vasculitis, throughout the body, can start attacking your organs and many times the urine test will come back looking like a kidney infection. It can also attack the lungs and look like pneumonia. The end result was that my mother ended up getting Pneumonia November 2009, was put on a ventilator in the ICU and when the antibiotics did not help get rid of the Pneumonia, and we were told that she would never get off the ventilator, and her body would basically start shutting down, we (her three children) made the decison to pull the life support (from an alert person who in all others ways seemed healthy). A horrible decision that I never imagined I would ever have to make. She passed away December 22 of 2009. It all happened so fast and I was stunned because so much of what I had read said that Vasculitis is very treatable. Most of what I found out was after the fact. The doctor's, although they were good, never mentioned that it can attack organs. I think they knew she had a very serious case and just didn't want to say. Most Vasculitis patients are on 20 milligrams or much less a day of Prednisone. I believe now that it was going into her kidneys and who knows, maybe it wasn't even Pneumonia that she had afterall. I wish I would have done all that research before she ended up in the hospital, but I was just researching side effects of Prednisone etc. I wish the doctor's would not have down played her condition like they must have done. So first of all, go to the doctor even if you have no insurance. It is something you have to do. You will be seeing a Rheumatologist. There were only three in my mom's area and we live in a suburb of Los Angeles! He was swamped with patients so it was very frustratrating. Than she was also seeing a Neurologist. When we got her into the ER the ER doctor asked me if my mother had had a flu shot and a Pneumonia shot. I didn't even know there was a Pneumonia shot. Her two doctors never mentioned either one to us. The ER doctor gave her those shots right than and there. So you need to ask you doctor if that is something you should get, if in fact you are put on Prednisone, because Prednisone depletes your immune system. I have had an uneasy feeling since she passed, that something was not done right with her care, although I do know she must have had a very serious case that now in hindsight I realize had been coming on for some time. We had all put her slower walking and sometimes the unsteadiness with her balance down to her age. So don't let any symptom, no matter how small it seems, get past you. Had it been caught much sooner she may have still been alive today. From what I have read, it is a very difficult disease to diagnose. Good luck to you and don't wait any longer to get medical care. All the articles regarding how controllable it is gave me a false sense of safety. Sorry for such a long reply but there are so many variables with this disease.

 
Old 03-25-2010, 06:52 AM   #4
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kinikki HB User
Re: Vasculitis? Pleurisy? Is this very serious?

Dear LauraAnn, I am so sorry for your loss. Thank you for taking the time to respond back with such helpful information. Right now I am continuing care, I have been to 5 doctors in the last 5 months and an ER but it seems like these doctors know even less than I do, which is scary. I am still in search for a doctor who is knowlegeable in these matters. Thank you again and take care.
- Nicole

Last edited by kinikki; 03-25-2010 at 06:53 AM.

 
Old 07-07-2010, 09:20 AM   #5
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faith562 HB User
Re: Vasculitis? Pleurisy? Is this very serious?

Yes I have vasculitis as well as a result of Hep C. I have been treated for the past three years with prednisone, ebrel, and the humera. The prednisone helped the vasculitis, but my body swelled so much that I now have very bad neuropathy in my feet. Anyway, I will be treated with a matainence dose of interferon to address the systemic problem. What kind of vasculitis do you have?
Faith

 
Old 08-22-2010, 08:43 AM   #6
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dreamer54 HB Userdreamer54 HB User
Re: Vasculitis? Pleurisy? Is this very serious?

Faith,

I was diagnosed with Vasculitis in May of this year. The disease took part of the vision in my rt. eye and left me with numb, useless feet and ankles. Spent weeks in the hospital, presently on, 60 mg of Prednisone ( down from 80mg ) as well as a Chemo. drug called Cytoxan. I would be very interested in comparing notes with you since I see that you also have a problem with your feet. Can you walk ? Have the drugs helped at all ? What other symptoms have you experienced ? It`s always such a help finding someone else who has the same problems since the medical community really dosen`t know much about this disease.

 
Old 12-01-2010, 10:24 PM   #7
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Debrakayw HB User
Re: Vasculitis? Pleurisy? Is this very serious?

I was diagnosed with vasculitis, when I was in ICU with cellulitis and ITP( which meant my immune systems was attacking my body, I had hardly any platellets in my blood. which was frim itp , dont know the cause. but it left me with vasculitis, there r several different kinds. a rheumatologist usually treats it. but it does need to be took seriously and monitored. my blood vessels swell and bust under the skin and case blood to leak from those places ,i was covered except my face. now I have a different kind of rash , go back to dr, tommorrow. try to go to a clinic or something, it can be serious. good luck

 
Old 12-02-2010, 03:31 AM   #8
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dreamer54 HB Userdreamer54 HB User
Re: Vasculitis? Pleurisy? Is this very serious?

Thanks for the response Debra. Yes, I am being treated by a Rheumatologist at a major University. Hopefully his treatment kicks in soon, haven`t seen great results yet.

Can I ask a few questions if you don`t mind ? What are the symptoms you are having right now ? My feet are totally useless and I do have a problem being lightheaded all the time. I do have red spots on my arms, they used to be on my legs. Many seem to be self inflicted though, whenever I bump my arm I seem to get a new red spot. Possibly the skin has thinned out causing most of this, red spots are an indication of the disease I have been told.

Thank you for any information on your symptoms, it`s a help to compare with others.

 
Old 12-02-2010, 07:10 AM   #9
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neveragain444 HB Userneveragain444 HB Userneveragain444 HB Userneveragain444 HB Userneveragain444 HB Userneveragain444 HB Userneveragain444 HB Userneveragain444 HB Userneveragain444 HB Userneveragain444 HB Userneveragain444 HB User
Re: Vasculitis? Pleurisy? Is this very serious?

I don't believe the pleurisy is serious. I have insurance, and my doctor is aware I have had pain breathing in and get to the point I feel like I'm sufficating, the pain gets so strong. Well he didn't do anything for it, mentioned it sounded like pleurisy, so I guess it's nothing.

 
Old 12-02-2010, 06:53 PM   #10
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Debrakayw HB User
Re: Vasculitis? Pleurisy? Is this very serious?

I can say mine started , i thought because of bumping into stuff was the cause at first, on my arms, then my feet were covered ,my legs , tummy al all over exceept my face we covered in red raised spots that finally started running together, then swelling kicked in all over, i had to take a lot of fluid pills, still do and prednisone, still having alot of symptoms , takes up to a year or more to recover. it is serious. goodluck, u r n my prayers

 
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