Hello Chief, I have read your posts with interest. The thing that strikes me more than anything else, is the similarity of the symptoms.
My thoracic specialist said, exercise is crucial and pleased when I told him I go beachcombing every day. The sea air, the sounds and the environment have a thereputic effect.
Have you tried Pantoprazole to relieve reflux? I take that regularly to stop the constant feeling of a bloating stomach. It especially helps when I have to take the heavy doses of Prednisolone. The nausea I have taking that is beyond the pale.
I always get my 'flu shots every year. And renew any other vaccinations, because I know that if I get an infection I will be in a lot of trouble.
I have a theory on the rarity of Sarcoidosis. Because of it's ability to mimic the symptoms of other diseases and attack any organ of the body, you have to wonder if the disease being treated is in fact Sarcoidosis. The symptoms are so variable. I know the ones applying to Pulmonary Sarcoidosis and Uveitis, but are there common symptoms for other parts of the body?
Thank you for sharing your experiences, Chief. All the best.
Well Chief, I just want to say that I'm really glad you're feeling better now even though I see that you still have a lot of issues that you still deal with. 30 some years of this sure is a lot of suffering to go through. I hope I'll have the strength that you have if my illness gets this bad. This illness is like hell from what I've read so far yet hardly any doctor seems to take it seriously.
So you're not taking any meds to treat the sarc. Reading some of the pieces on this illness they make it sound like taking cortisone is a must or we're dead.
I hope things get even better for you and for us all. Thanks for writing about your story with this illness. All the best to you.
Hi zss, Yes my reflux is a prescription medicine only, Nexium (esomeprazole) my reflux has something to do with 3 things that may have occured: the closure of the glottis being impaired (hardened) either because of the steroid treatments, the Sarcoidosis itself or where they had cut for biopsy to remove Lymph nodes in my lung trachea as there is a now ridge of scar tissue where they cut and it has healed not far from there. Yes I keep fairly mobile as a Sports Trainer and a carer for my wife and keep to a lean sort of diet most of the time keeping away from processed foods most of the time, I moved to the Country away from the Big Smoke of Melbourne and found my Hayfever and Sinuses are managed so much better for in Melbourne I was near on eleven months of the year with those problems but here in the Country maybe lucky to be 1-2 months it may effect me due to the triggers like Pine Pollen which is one of my triggers then there is Mold and Solanaceae Family being Deadly Nightshade, Wild Tabacco plant which can knock me for six, but the Tomato and Potato plants from that family are fine. As for the Mimic that's correct some people may have been treated for other things like TB as it mimics this, with myself they needed to eliminate 5 bad ones being: TB, HIV Aids, Sarcoma, Leukemia and some rare form of lung cancer after all the testing and there were heaps taken from every part of my body nothing was missed which was at times very embarrassing for me with the tests and the questioning from Specialists of why I was like this, scared the hell out of me also at the time I had no one to talk to apart from my Father for a shoulder to put my head on as half my family ignored me they thinking I was trying to get attention or putting it on and my so called mates ignored me thinking I had some sort of infectious disease they stayed away, so very hard & trying times back then but got through the hard stuff, the only tell tale signs I show from outsiders to ask if I have, you got chicken Pox or Measles? (due to my blister pimples) plus I tend to scratch a little or rub my eyes a bit which then become darkened like I'm wearing black eye shadow so I tell everyone not be alarmed I'm still going through puberty lol but there are more people now that listen to what I have. That's another good thing that has kept me going forward is my sense of humour for being able to laugh at one's self does help quite a bit.
Hello Chief, I live in the southern suburbs of Adelaide. Right now, I'm trying to finish a room I'm renovating. Illness had slowed things up considerably, actually it's come to a stop. When it's finished....... I intend to resume my Uni studies in electronic engineering. I also renewed my interest in RC model aircraft, this time NO internal combustion engines. Everything is electric, it combines both my interests in electronics and aerospace. These are what is keeping me going. I will get there eventually.
BTW, tangles is a resident of Melbourne. He's in this thread further up.
thank zss! that sounds like the explanation I kinda got, even though they just diagnosed me this year, they are tracing it back to lung issues from years ago...so thats puts me on the verge of turning chronic I guess. thankfully lung cleared up though with not a lot of damage. They started me on high dose steroids before my diagnosis but after my late 2016 "attack" and I had horrible reactions. and am still trying to feel better from it. They put me on Acthar injections but I continued to get worse with my eye but the side effects from Achar though similar to Prednise were so very much better. but they took me off of that because my eye got worse...now Im waiting on the pre auth for the Humira and I started Methotrexate last weekend. have they discussed other options with you? Id be interested. Acthar is highly expensive but so very very much worth it as an alternative to prednisone. I was blessed to get asked to participate in an Acthar trial because I had a "virgin" system for drugs against my Sarc and I was unable to tolerate the prednisone. the study was for if it worked on Uveitis AND were the side effects better. the side effects were a lot better, they were there, but I actually had a decent quality of life....but it didn't work fast enough on the eye and when I produced 2 new hemrhages they pulled me and thats why they want to start me on the Methotrexate and the humira together....the pharmacist said she doesnt usually see both of those together...does anyone else take those two classes of meds? I haven't started the Humira yet but I will when its approved and it scares me .... but being totally blind scares me much, much more.
I was diagnosed with Pulmonary Sarcoid in May 2013. After pred treatments, and other drugs, I was put on Humira and Methotrexate in Aug 2013. In 2015 I was told I was in remission. Still a little short of breath, but gained all of my weight back (lost 50 pounds). Wishing you the best. Hope this helps.
Hi gail. To complicate matters a bit it seems there is a lot of unknowns on this. It may depend on the ability of your immune system to fight this. It is interesting to look up ehrlichia Anaplasma phagocytophilum . See if you can spot a difference .I am seriously looking into this one. x