I've been kind of checking this board out and its always so negative. I'm on Prednisone which I hate because of my pulmonary sarcoidoisis and I wonder if there is any hope to get back to normal? I want to run a marathon, race mt bikes, etc... Has anyone here had their sarc go into remission and get back to the physical shape they were originally?
Not a success story...yet :) but my rheumatologist has me on humira and I've taken 4 shots so far (4 total weeks) of it. I don't know how it has been reacting to the sarcoid, but I will find out on my next appointment with the doc on 8/4/08, which at the time will be on humira for 5 weeks (5 shots)...but I can tell you that I don't find myself as tired as I was before I started humira and my swollen saliva glands seem to have shrunk a little...I think...but it can all be in my mind, guess I'll find on 8/4/08.
I also hit the gym for weight training for about 1 hr...4-5 times a week and feel good, not 100% as before the sarcoid but good enough and not feel lazy anymore.
Good luck!
I think it is possible for anyone to go into remission at any time. The stuff I read on the internet (can't vouch for the truthfulness of it) says that the longer you have sarc without remission and the more places you have it the more chance it will become chronic. If your symptoms came on quick and its primarily in your lungs or skin, you are more likely to obtain remission.
My symptoms came on gradually and I have been ill for 4 years. I have been on remicade infusions now since Feb and I am seeing a lot of improvement but could I go out running, not yet. But, everyone is different and if you don't seem to be responding to the drugs you are on, ask your doctor about other options.
I think you see most of us here being negative as you called it is because we have been ill for a while and the people who do hit remission quickly are less likely to seek out a support board like this.
Hi there;
I can vouch for the fact that there is the possibility of remission. I was diagnosed approx 9 - 10 years ago. My sarcoid went into remission about 7 years ago and stayed there until recently. I was living an active life and didn't really give it a thought until this winter when I started having trouble breathing. Unfortunately this bout with the sarcoid is much, much worse than my initial bout with it. But thats me, and none of us are exactly the same. Just keep positive thinking because one thing I have learned is that positive thinking is sometimes better than the drugs.
The thing is that I was first diagnosed years ago 1994 and never had a problem til this past March. Is it all downhill now? Or does it go into remission hopefully and get back to normal I guess is what I'm asking>
The dr's were full of hope - very sucessful in treating people like me. Now two and one half years later - things aren't better - things are worse.
To be perfectly honest - If I was a sucess with this disease - I wouldn't have been looking for answers and found this forum. I'd be out living - and putting this all behind me.
There are several success stories ...
TheGardner is off all medication and living a normal life. One patient with sarcoidosis is an athlete that was just up for an ESPY. Most people, and I mean the large majority, go into remission and stay there. Those in remission are less likely to visit the board as much though so you get a skewed sample here.
I was first diagnosed in 1998. After which I took prednisone for nine months and then my doctors all left the area. I quit the prednisone. One of first doctors had told me that it might leave me alone for a while and then come back. I returned to normal for 8 years, then I have had my second bout. The second bout with this put me in the hospital. They got me better. Now I am starting bout number three. I have started having a heart problem with leaky valves which I did not have in 2006. I am on oxygen now. This stuff took my lungs out and is still harming them. I am waiting to find out where the sarcoid has gone. I have extreme joint pain right now and I think I have the good time without sarcoid. It doesn't look good. I want to find an insurance policy and get ready to meet my maker.
I'm basically in remission, my symptoms are very very minimal as compared to the last few years. I was on Prednisone for nearly a year. I still take Plaquenil daily. The meds could be the reason that my symptoms are very minor. I'll take even a slight remission from disease. It's working for me so far. I still still go swimming weekly, even though I take frequent rest breaks.
Try to maintain a positive attitude, you don't have to let Sarc. defeat you. So be very encouraged about improving your health and resuming your lifestyle even if it at a slower speed.
You will find a lot of support from this website even if it seems negative at times. No one wants an illness. Everyone here is at a different phase and/or stage of Sarc. Reading even the negative or somber entries can at time be depressing. However, I say a little prayer that those suffering persons to obtain some measure of relief soon .
Also try to see the humour in all this. Try reading The Gardeners comical graphics "Rabid Barking Lymph Nodes" series and other stories.
After suffering with symptoms for 1 1/2 years before diag. I have been officially diagnosed for 8 months. Just started prednisone 10mg about 8 weeks ago. Symptoms have almost completely gone to nothing. I lost 15#s in 6 weeks due to the ability to workout and exercise again. I went from 215 to 200. I think next time I check in the Doctor I will be off prednisone and on nothing! Pulmonary sarc also. I am almost up to running 20k a week. Not yet 100% still have some bad days but it is possible!
I seem to be in remission after battling the sarcoid for almost 10 years...For the past two years, I just seemed to get better and better with less pain, etc. and no new flare ups. I had developed shingles, and was given a heavy-duty dose of prednisone that tapered off over time. For some reason, that just kicked the disease to the curb. I just went through every lab test the doctor could think of, and they all came back normal. I still tire easily and nap every day for a couple of hours. I try to eat as healthy as possible. I also learned to set limits. So don't give up...take each day as best as you can.
When we are comparing notes and sharing our experiences with sarc, I suspect that people who are the success stories don't bother with a site like this. My story is mostly a downer, but I can still laugh and joke about it.
Hi, from what I've been reading I think there is a good chance of remission the way I understand it is (or rather the only thing the Doctor shared with me about me) was that if he held off the steroids there was a VERY good chance it would clear itself but could take a while he has found that if treated with steroids it tends to come back!!!!! NOW no 2 sarcoid patients are the same and neither are 2 people on there recoveries. I'm a firm believer in PMA I know it's very difficult when feeling VERY ill but I'm luckier than most I don't think I have it badly, but who's to say it WON'T get worse.
TRY STAYING POSITIVE.
All the Best
Diane xx
I've dealt with sarc in both my lungs and nervous systems since '91, having several major flares during that time. There have been periods of remission along the way...some partial, some full.
I used to run, work out and be active all the time. Pred helped me add 40+ unwanted pounds, leaving me overweight, out of shape, and on the verge of depression.
The proverbial straw with the pred was the loss of most of my hair in April. Docs weren't sure what caused it but they were convinced it was another autoimmune dysfunction which the pred should have prevented. I had already stopped taking cellcept late last year due to a bad reaction. I threw out the pred not long after my hair started to go.
I have been in remission for the past few months and probably was for some time...I just didn't know it. I'm now back in the gym. I've lost 26lbs with another 14 to go. I gone from breathless within 5 minutes to 40 minutes of cardio on the eliptical followed by intense strength training.
Attitude has everything to do with it. If you think you are beat then you are. There is always hope.
I think the army says it best, "Be all you can be!"
Had pulmonary sarc, stage I. It went into remission. Regarding pulmonary sarc....I live life as usual. I carry an inhaler and rarely use it. But I am very aware of smells and dust... just cautious.
Good Luck
DOLL
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