Already a member? Sign in
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!
Hi guys,
When I was first diagnosed with this monster my general practioner said that I have a 70 percent chance of going into remission after a year and a half. After being on this site, I realize he may have been blowing smoke up my ears. Has anybody gone into remission? I am praying that it will happen so I can detox from all of these scary drugs and go on with my life. I know it will always be lurking, but I am just curious? Thanks!! Tish
Cancer Surgery Arthritis Prednisone Rheumatoid arthritis Sarcoidosis Methotrexate
Hello Tish. I was diagnose with this disease 17 years ago. I really think it depends on where your sarcoid is and how advanced it is. Over the years I have been in remission several times. But I have to deal with other issues that either the sarc has caused or from the meds. On the other hand my Daughter was diagnosed several years ago just by chance. She has never had to be on meds. She has fatigue from it. She goes every six months to get a Aces test from her Pulmo. Because she knows how bad this disease can be. A lot of the people who get Sarcoid do go in remission but there are flair ups that do happen from time to time. I hope this helps. I wish you the best.
God Bless, Erica
Hi,
You have better than 50% chance you will go into remission within 3 years, but remission may only mean, one of your dramas may not annoy you and remission can last from a few weeks till the rest of your life. And if you are not going to a sarc clinic your doc probably is using old information.
Alan
Is there such thing as a sarc clinic????? I have a rheumatologist. Thanks. TIsh
Thanks Erika. I like your name. I can imagine how frustrated you were 17 years ago. Not that any big breakthru has happened since. I am applying for disablity. I am a single mom, and havent been able to work since April. This stinks. My sarc is festering in my spleen and some in my thorax (wherever that is). But I feel like my bones just ache. I dont want to be labeled disabled. But it is what it is. Thanks for your info. and good luck to you and your daughter. My mom had terrible rheumatoid arthritis, maybe I inherited this.====Who knows.
12 years ago I had sarcoidosis in my lungs, I went on the prednisone route and for 12 years was free of any health problems. I now have cardiac involvement. So for 12 years I never would have posted here. Now, with my new issues, I visit every day. Those of us that have few or no problems probably won't be on this site. Remember, most people posting here have problems with sarcoidosis, other wise they probably wouldn't be visiting the site. Don't try to do a poll of all people with sarcoid by what you see here.
That's a very good point!!!!!! If you are in remission it is the last thing you want to think of. I hope everything works out well with your new battle. Mine is in my spleen, my general doctor wants to take my spleen out, but my sarc doctor doesnt. Oh what to do.
Thanks Tish
Hi Tishee,
4 replies to your post now 4 different stories. Uncertainty seems to be about all you can count on for sure with sarcoidosis. Most docs have told me you either have little to no problems from this disease or you have a chronic form of it. I dont know if I agree. I had a long 'battle' w/ sarc for about 5-6 yrs. It was in my lungs, GI trac,urinary trac,joints, etc. Then w/ out prednisone, methotrexate,plaquenil, or any other sarc treatment i got better. This lasted for about 6 yrs . I have been ill again now for about a year.
My 'former' doc at Hopkins Sarc Clinic said he didnt think the sarc came back because it usually doesnt come back after such a long remission". Then he told me he couldnt rule it out though! Despite this a urologist and thoracic surgeon there said they were pretty certain i had neurological implications from sarc. Reading other peoples posts on here I know I am not the only one who doesnt fit neatly into one of the two sarcoid categories. I hold out hope because of my past remission and others like "Sailwest". I like to share this as it might give others hope as well. If you arent better in the 1 and 1/2-2 yr window or whatever, dont think you wont have a chance at remission. Try to eat/live healthy, follow suggestions that have worked for others, and pray or cross your fingers or whatever else helps you.
Thanks kmb. Your puppy is cute!! The power of prayer definately helps. Good luck with your recent flare up. Thanks, TIsh
Hi tishee,I have had sarc.for 15yrs ,this is MY CHOICE, (dont go by what I have done, )but I refused to go on prednisone ever again after being put on it for my first and second flare 3 yrs apart !!! I have it in lungs,liver,spine joints, and neurological,I go in and out of remission and have always made it through the worst flares,I was worse on the pred.and it seemed my body was "looking" for the medication as a "RESCUE".. plus prednisone can deteriorate joints as well,the bottom line is ,everyone deals with this monster independently,and some will take meds others wont,I have just found like some of the other posts what works for my body alone,I feel it takes care of it itself if it has "no choice" ..Good luck with what ever path you choose and hopefully you will have many years of remissions instead of flare ups!!! have a good night ..Mama-Kaz
Tishee,
No, in my opinion the Dr is not blowing smoke. Most of the people who are on this site are people with chronic conditions, not the ones with the resolving conditions. Also, the folks on this site are not those who are blissfully unaware of their sarc. And lastly, some people on this site have not gotten a confirmed diagnosis yet - not saying they don't have sarc, but it is something that masquerades as other diseases, so a exclusion is important.
Stats for remission etc are fairly well-documented, and although there may be slight errors, I believe them. When my husband was diagnosed, I had a student who said he'd also had it but it went away and in fact would never have been found except he needed a chest X-ray for a job.
Of course, this is just my opinion, so you don't have to listen to it (smile). Rascalsmom
Hi Sailwood,
Sorry to hear that you now have cardiac involvement. I was diagnosed in 1993 (32 years old) and went on prednisone for three years. I have about 20% lung damage and I am totally blind in one eye. I still use the eye drops though.
I can't play sports anymore and at times I labor when walking stairs or inclines but all of my checkups over the past 16 years have shown this disease to be inactive. I am humbled and blessed because I know there is a possibility that at anytime it may show up again.
So not all members of this site are having problems with Sarcoidosis. I am here to show support and empathy to those who suffer from it. God bless!
Hi Tishee,
I was in remission for over 20 years. I was able to have a successful career as a science educator. It came back in 1999. This is a horrible disease but you must have faith.Mine/over matter. Keep your mine strong and positive. God Bless!!!!
cherylone1
Sarcoidosis is a silent disease until you have problems caused by it. I was first diagnosed in 1998. I went on medication for six months. My doctors left the area and I went off the medication. I was all right for eight years, then I hurt my back. and the sarcoid came back full term. They put me on 60mgs of prednisone. After a few months I began to have problems with my legs not wanting to hold me up. I kept going. Then I found out two years later that I had heart problems with leaky valves. I also have neuro-sarc. I have been on prednisone and methotrexate. I got fed up last year with the medication and I went off of everything. I am now taking prednisone 15 mgs and my doctors want me to take methotrexate by December. It is my personal belief that there is no remission for sarc patients, but that the disease continues to work on your body but you don't realize the damage until the damage occurs. Does that make sense? There is nothing we can do except take the medication and hope for the best.
Hi showme,
That makes total sense. I really think this is an abnoxious disease!!! (dumb thing to say). Tish
I don't know about remission; what I do know is that I was misdiagnosed about 17 years ago. I'm guessing that means that I have not had any type of remission. I do however have flare-ups which I can actually feel coming on. I know that this disease is progressing. I have had VATS surgery in July, my gallbladder out in September (with sarcoid present), and this last Friday I had a breast biopsy with active nodes. I have to have another mammogram in six months to made sure the node does not get bigger. If it does, it's got to come out. I know that we've had these discussions before, but has anyone had similar results? Thanks and God bless.
Hi Tish-remission that is the question.My rheumotologist tells me the longer the Sarcoid is active the less likely remission will occur.My family doctor had told me I was suffering from stress&to take a vacation-needless to say no vacation was going to help.Thank God for good specialists.I was diagnosed almost 3 yrs ago.I tried to go back to work parttime after a year but couldn't do it.I am now on Long term Disability.I am Canadian &very grateful for the access to specialists at no cost.
Two weeks ago I was taken off MTX because it was affecting my cognitive skills-in the meantime I'm having weekly blood tests to see what the effects of not taking this drug will cause.
To sum things up-I don't dwell on remission,I enjoy the good days,very thankful for excellent doctor and I always tell myself it can always be worse.This is an excellent forum to vent and ask questions-on my bad days I go here and see what others are going through....Take care.Joanne
I believe that remission is simply a term doctors use to describe the time during which the disease is not exhibiting any measurable indicators or significantly impactful symptoms that are clearly identifiable as sarcoid.
I do not believe that it truly means nothing is happening - for some, I think the progress of the disease has slowed significantly during this phase, for others, the symptoms have either decreased or stabilized instead of growing worse.
It does not mean that the doctors are misleading us, it only means that there is no better term to use for this state, and since most people get that remission in cancer treatments means 'no immediate problem, but keep monitoring/checking for recurrance', its the closest term that lay people understand.
(PS I am not a doc, this is just my interpretation based on personal experience).
So, if I ever do go into remission, I will be thankful, grateful, and much happier, but I will not be expecting that its all over and I have nothing left to do to manage this disease - if I am lucky, some day it will simply mean that I get to do a lot less to treat it for a while.
Thanks guys! Lets just all keep praying to whatever god you pray to that this lets up. Dont know about you guys, but I am sick of it!!!!!! Tish
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