0 Recommendations
Does anyone know how the Swine flu or if it affects anyone with sarcoidosis
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Swineflue/sarcoidosis
- By alive
- Posted September 23, 2009 at 7:06 pm · 13 replies
- In Living with sarcoidosis
- Shared with the public
Explore topics in this discussion:
Pulmonary sarcoidosis Allergies Fever Pneumonia Weakness Pain Memory Prednisone Sarcoidosis Methotrexate
13 replies
- Oldest first
- Newest first
- By rascalsmom
- Posted September 23, 2009 at 8:16 pm
- Report post
The answer is "it depends." Underlying health problems are not good things to have, but everyone responds to things differently. How have you reacted to regular flu? If you have seriously advanced fibrosis/bullous disease, it could be bad. But, maybe not. Rascalsmom
- By IreneMarie
- Posted September 23, 2009 at 8:39 pm
- Report post
Hi alive,
A flu comes around every year with fairly steady statistics from year to year, swine flu - 1918, 1976, 2002. We Sarcies have been around since circa1940s,
but no research has established any statisics defining specific impact on Sarc affected people even with other influenzas. We fall under the radar.
I'm interested in what your opinion is. How did you fair last winter season?
- By alive
- Posted September 23, 2009 at 8:48 pm
- Report post
People with sarcoidosis have to be careful who and what they are around. It's not good for us to be around people that are sick period. If we get sick it's not good
- By IreneMarie
- Posted September 23, 2009 at 8:59 pm
- Report post
You must be particularly careful if you are being treated for Sarc with immuno suppressants. A compromised immune system is very vulnerable to infections. If you are not being treated your chances are similar to the general population.
- By Angelfox
- Posted September 23, 2009 at 9:34 pm
- Report post
Hi.....are you taking prednesone or other meds for your sarcoidosis. If you are, stay away if possible from anyone that you know to be sick.
Sarc patients have poor immune systems, especially if they are on meds.
God bless!!
- By IreneMarie
- Posted September 23, 2009 at 9:52 pm
- Report post
Immuno suppressants are the drugs rheumatologists, etc., prescribe to treat Sarcoidosis inflammation. I have it in my eyes, face/sinuses, throat, lungs, muscles and joints. It's causing extreme weakness and fatigue, pain, hoarseness, nasal stuffiness, loss of smell and taste, partial blindness, brain fog and memory loss, among other distasteful limitations.
I'm on the Prednisone to prevent further blindness but because it's a steroid and I need to be on long term management, I am slowly switching over to a non-steroidal anti inflammatory drug.
Hope yoou are doing well.
I.
- By ellj
- Posted September 24, 2009 at 8:51 am
- Report post
You specifically asked about Swine Flu. The H1N1 vaccine will not be given to the population as a whole. However, those with pulmonary diseases such as sarc are currently in the group of first line people who are eligible for the vaccine. We, who have underlying pulmonary issues, are at risk of the serious complications of this strain of flu.
My doctors also suggest a regular flu shot and a pneumonia shot every 5 years.
Please ask you doctor about all aspects of the flu strains and vaccines.
- By Krissy
- Posted September 24, 2009 at 7:42 pm
- Report post
Those of you who have pulmonary sarcoidosis, which is probably most of you, are in what they consider the "high risk group" for swine flu. It has to be an individual decision whether to be immunised or not. Most of you have to think about this because no one can tell you whether or not you will have problems with the vaccine and each sarcoidosis sufferer is different. Next week it will be released free of charge for all Australians. Many of us already had swine flu during the recent winter. At first they were testing everyone to see whether you had it (if you were flu infected). After a while they stated if you had the flu, you probably have had swine flu. I did have flu during winter, so I may have had it. I have not had lung symptoms for more than 8 years. Because I think that I already contracted swine flu during winter, I have decided not to be immunised.
- By BrianS
- Posted October 2, 2009 at 11:30 am
- Report post
Hi, had to stop by and chime in on this one. I've got systemic Sarc (pulmonary being the current active component of it) and I am (hopefully) just finishing a bout with H1N1. It's hit my entire family. My son (18) had one of his high school teachers out with it 3 weeks ago, then he got it. Then my wife and 5 yr old were next, and I thought I would escape it, but no luck. The only symptoms I had were sinus congestion, a tightening in my chest and my temp went up. The first two symptoms are normal all of the time since I've got allergies and have become accustomed to the chest congestion, but it was the 3rd that sent me to go see the Doc. Before I even got into the office, the Doc was proactive about me being high risk and had already filled out a prescription for Tamiflu and had a Doctor's note for me to stay out of work the remainder of the week. He was completely right; I cannot believe how much my breathing capacity had decreased because of congestion until the meds started working. I thought it was all normal until the temp started to rise.
That's prednisone for you - it not only suppresses your immune system to make you more vulnerable to catching germs, it also masks a lot of the pain and other symptoms once you have contracted something. I have not had as bad of a respiratory element of H1N1 as both of my kids did (they both had a lot of chest congestion, the younger one to the point where she was almost wheezing). I guess it's different for everyone though.
So guess it's possible for H1n1 to affect us Sarkies the same way it affects everyone else, but if we're all taking the immunodepressant type drugs, we could really be in trouble before we know it.
Hope everyone is well, and will have a flu-free season!
- By flerg
- Posted November 3, 2009 at 1:40 pm
- Report post
I thought sarcoidosis was a revved up immune system, mine has been tested and is working flat out. Your immunity is only poor and sub par when reduced by immuno suppressants like prednisone, no?
- By flerg
- Posted November 3, 2009 at 1:41 pm
- Report post
I will be getting the swine flu vaccine next wk but really not looking forward to it!!
- By blondinette_27
- Posted November 4, 2009 at 8:03 am
- Report post
Our doctor has diagnosed my kids and I with H1N1, we have not been tested because all suspected cases of flu are considered to be H1N1. They only test those who are hospitalized. Since we don't know 100%, the doctor strongly recommends the vaccine anyway.
My 5 year old has sarcoidosis, she has no lung involvement but she is on prednisone and methotrexate which are both immunosuppressant drugs so anyone taking such medication is considered high risk. As soon as my daughter's cough and fever began, she was given Tamiflu within the 48 hour time frame and her symptoms decreased significantly.
Help and information from FSR
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.
You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.
Add to the discussion