Posted , 9 users are following.
Hi alll
Recently diagnosed in June this year with sarcoidosis had a relatively normal life until this hit, my question is when you get a head cold or indeed a chest cold is it worse? What are the effects or signs to look out for? Anything that helps ?
Any help is appreciated
Colin
0 likes, 39 replies
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terry39293 colin86649
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colin86649 terry39293
Posted
carla46710 colin86649
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I was diagnosed in 2010. Unfortunately my sarcoid is wide spread. Lungs skin, heart. Not sure of brain and eye involvement at this time. I have periods of attacks where my skin breaks out and looks horrific. I am in the US and have been advised by my Crital Care Pulmonologist to enter the research group in Washington Univ Hospital in St. Louis. Not sure yet. This disease is horrible!!
colin86649 carla46710
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Hi Carla
Sorry to hear it has spread to other parts I hope you are doing well at least, yes it's a horrible thing sometimes it doesn't affect me I think this cold has shown me that it's real and will affect my life wishing you well as you go through this condition too
AmandaPC carla46710
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Have you been advise do stay out of the sun amd cover up with sun screen if you go outside?
AmandaPC carla46710
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AmandaPC carla46710
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Katlis colin86649
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I wish I knew I never even was sick prior to my diagnose I went to hosp with swollen ankles and feet came out with swollen lymph nodes and byopsy to find Sarcoidosis and now I was told prednisone is not responding and have to come off it so idk i need help to nobody knows enough about this desease but it's been around for yrs!!! What the heck
rachael88657 colin86649
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2nd attempt to reply! I've had sarcoidosis for 10+ years it has spread from lungs to sinuses and eyes. I had terrible problems with sinus infections while at work which was due to poor immune system of course but that's not how work saw it! I now use herbal medicine to treat any infections as antibiotics don't work for me.
magdafloasiu colin86649
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Hi Colin,
the easiest way to stay away from colds is to boost your immune system. As far as I understood from my doctor, they give us steroids not necessarily to lower our immune system, but to keep inflammation under control. My doctor told me to take a good immune booster while I'm on steroids. Also, she told me to pay attention and even take calcium+vit d and potassium supplements, as prednisone can cause calcium and potassium excretion. You can also read online about the relationship between the dose of prednisone and the urinary excretion of potassium and calcium. While low calcium levels will cause osteoporosis, potassium will affect heart's functioning. My advice to you is to read specialty publications and never rely solely on forums. For instance, the National Center for Biotechnology Information has a lot of research on sarcoidosis. The studies I've found over there helped me to better understand this disease.
Good luck!
magdafloasiu
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polly79837 colin86649
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Hi Colin,
Since my last reply I have developed a chest infection. I'm back up to 30mgs prednisolone daily for two weeks. Two weeks of antibiotics. Started on a blood pressure tablet as bp very high due to steroids. I feel like I did before I was diagnosed. Not sleeping much at night due to constant hacking cough. I went to my gp as soon as I felt unwell and visited my consultant today. Had a chest xray too. Back to see my consultant again in two weeks to hatch a new plan. I feel like crap being totally honest and totally disheartened because I was doing so well and thought I would be going back to work soon. Really hope you don't get a chest cold.
Regards,
Polly.
rachael88657 polly79837
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Can understand your frustration. I'm so glad that I declined steroids given what you are going through! Having said that I'm currently nursing a horrible cyst on my back which my GP decided would not respond to antibiotics so the herbal medicine has come into its own and has helped enormously. Maybe I won't require surgery on the 23rd! Fingers crossed for us both! Regards Rachael
polly79837 rachael88657
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Hi Rachael,
Sorry for late reply. Glad to hear herbal medicine is working. Hopefully you won't need surgery. I wasn't given an option about steroid treatment. To be honest I was responding very well to them. My nodules had decreased in size and some had disappeared. I felt really well until I developed this chest infection. Even though I am back on prednisolone 30mgs daily my cough persists which had gone completely when I started on the 30mgs prednisolone way back in March this year. I'll persevere with them and the antibiotics for the second week and see how I get on with my consultant on September 12th. Hope all goes well on the 23rd.
Regards,
Polly
rachael88657 polly79837
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terry39293 polly79837
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Where do you start learning about herbal stuff please. I have just joined Facebook so I can follow the sarc page. First thing I found out is how bad aspartame is for you.
rachael88657 terry39293
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I went to Neals Yard and saw a qualified herbalist who specialises in autoimmune conditions. It's not cheap but the results are far better for me given my track record with antibiotics. Wouldn't consider self medicating with herbs as sarcoidosis is such an awkward condition to treat anyway. Must dig the books out that I got as well which has shed a bit of light on the subject too! Hope this helps.