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Anyone ever go into remission a 2nd time???

teeteeme
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What I don't get, is that when someone has "cancer" its a horse of a differnet color! Then they can come out and talk about it, everyone wants to listen.There is no new info, what do they want to hear! Give us a turn. They have more meds to make their lives "bearable" while they are going thru treatment and pain. By who's scale is their pain worse than a very sick sarcoid patient? Well Blue Cross Blue Shield thinks so. I have posted before that I am fighting for the fentora that I was on for 3 years, then they yanked it come renewal time for prior authorization, saying FDA says it is for Break through Cancer Pain. I guess Break through Sarcoid Pain is a walk in the park.lol
Don't get me wrong, cancer is terrible. But personally, I would rather roll the dice with cancer, than suffer my whole life with this disease. My first husband couldn't handIe how sick I was and jumped ship. Too bad he missed when I went into remission for 2 1/2 years, Thats when I met my now husband. Then I turned my head one day and hernicated a disc in my neck. BAM! The sarcoid came back faster than I could say "I don't feel very good".
It came back, bigger, badder, madder, and stronger. I guess it was mad it had, had an unpaid vacation. I originally only had it in my lungs. Now, it is in my lungs, heart, nervous system, joints, eyes, skin, lymph nodes, wrists, elbows, spine. I am on Remicade and Prednisone. Of course a pharmacy of pain meds, that would kill a horse. (from a pain clinic) I have a spinal cord stimulator. It has caused arthritis everywhere. every week it is something else.
Now let me ask everyone, when was the last time you heard of someone going into remission twice? It took me 7 years to go into remission the first time, what does that say. I don't me to be Debbie Downer, I am just pissed. I am in so much pain today, it feels like someone is driving a stake down my spine, and at the same time think of the worst toothache you ever had, Now close your eyes, think of the back of your head, above your neck. That whole area is the toothache and you have had it for days along with all the other pain in your chest, wrists, fingers, ankles, breasts and the rest of my ravaged body. Open your eyes, welcome to my world.
I don't want to play anymore.

Explore topics in this discussion:

Asthma Cancer Surgery Arthritis Fentanyl Methadone Sinusitis Laryngitis Vertigo Beta blockers Pain Prednisone Pacemaker Sarcoidosis Neurogenic bladder

20 replies

silvercivic

WE understand the suffering that you are going through.....it sounds horrible. Don't know about a second remission. You have been fighting it for a long time.I've only been "lucky" enough to be fighting it for 1 year.
As I told another member......it is going to have to be a SUPERSTAR in the eyes of the public to get this disease. A superstar that the public likes. It's going to have to be someone who is on tv all the time......and would be willing to make public his or her disease and be an advocate for it. It would have to be someone like a Letterman.....or a Leno....or a sports superstar like Tom Brady to REALLY bring attention and get the donations flooding in for more research.
I don't want anyone to get this nightmare of a disease. But,the fact is that what I just said is the sad truth.I wish you best of luck,
Dave

HopeNicole

I know how u feel! I was diagnosed in 2004 in my lungs. have been in so called remission for 2 years and now think it has spread to my spleen nervous system bones and who knows where else. I have been suffering w my neck shoulders hands arms hands knee pain joint pain sinuses etc etc etc! I am traveling 13 hours to the cleveland clinic to get some help hopefully. Personally I dont think u ever go into remission. I think this stuff attacks one spot gets thru terrorizing u there and says hey lets play mind games. I will stop for a minute. But little do u know I am heading here and here and here and here and ha ha ha theres really nothing u can do about it! At least there is not much. It sound like I am goin crazy and maybe I am. But thats how i feel. I am so tired of hurting. Something hurts everyday if not everything for multiple days. Now days wen I wake up I wonder hum wonder wat level of pain I will be in today.

DoreenC

I thought I had went into remission, but looking back it became quieter and I did have other symptoms that I didn't know were related to sarc (lichens sclerosis, skin nodules, chronic sinusitis and laryngitis, uveitis that I didn't detect at the time and thought I had pink eye etc etc).
It came back with a vengance too after being "quieter". Do you think you had any mild symptoms that you didn't associate with the sarc druing your remission period?
So, I wish I could answer this one for you.
I hope you get some pain relief soon. Shame on Blue Cross and Shield.

Doreen

teeteeme

No, I definitly went into remission. I weaned myself off all the pain meds. and was fine. I felt great! I started working again (full time as the General Manager for a beautiful, very bust, restaurant. I was on the move, every minute, just the way I used to be. Because I became single again, I was also going out at night too!! I live in the Hamptons, so the Summers are crazy, and I went a little crazy, after 7 years of literally being bedridden (I mean sleeping 18 hours was common, when I was awake, I was miserable. I had so much chest pain. and back then, in 1994,5,6,7 they did not recognize chest pain as a symptom of sarcoid. Everyone thought I was crazy, exagerating or that it had to be my heart or reflux. I insisted it was the sarcoid and finally found a pain Dr. who agreed I had scar tissue over the nerve endings in my lungs, and it was there to stay. Imagine the horror back then!!) So you get that I was very sick, and then it was like, boom, all of a sudden I started feeling better. I noticed I didn't have pain. I had been on SSID for years, I was the one who called them and told them, I wanted to go back to work. I don't think they get many calls from people asking to go BACK to work. I couldn't wait to get my life back!! and I had it for a while. Now I am back, to being pretty much bed ridden, it hurts too much to move. This disease robbed me of having children. Even if it had been safe to carry a baby to term, my pulmonologist was very scared I would die of complications After, and I certainly couldn't care for a child in my condition. Everytime I see my nephews and neice, and my friends chidren, it is so hard. I feel like such an outsider, to a club that I can never belong to. People say "you should adopt", I am like, 1. We don't have the money 2. even if we did, did you not hear me say, I couldn't care for a child. and I am not so selfish, that I would satisfy my own wants and needs, and comprimise the quality of life a child deserves. and so it goes on, and on, and on, and on, and on........each morning opening my eyes taking inventory of what is in the most pain, so far that day, and try to go from there. and BCBS can bite me, because I am going to keep appealing, until my fingers bleed. I heard, they think that most people give up, obviously, they haven't met me.... YET! God Bless and I hope tomorrow is a better day for you all.

dollh

Dear teeteeme,
I am crying tonight about my situation with sarc and I read your story. I am so sorry you have started all that awful stuff again! How do you keep going through it all! I admire your strength to survive 7 years of so much pain and I am so happy you had 2 1/2 years of relief. I cry for you tonight and I pray tomorrow we will all have a better day! I have no idea what to do with myself, drugs, drs, family, disease, but I will put you in my prayers tonight for a quick remission!
Luv and God Bless
Dollh

teeteeme

Dollh sweetheart,
It is so hard, and i cry all the time. Luckily my parents and siblings are very supportive. I have One friend "Chrissy" left, and she "gets it". My other friends abandon me long ago. They would tell Chrissy, that they didn't know what to say to me. She would say "just say hi!" "If she is sad, let her cry, if she isn't talk like you usually do". One by one, they trickled away, even my best friend of 20 years-GONE! Chrissy is my BFF now. and the best BFF ever. There is alot more to my story, but what I am getting to is that I am blessed that I have my family and Chrissy, My husband has been great, but lately he is having a hard time dealing, and watching me slip away, and he can't do anything about it. I am trying to get him to go talk to a professional.
We can only take things moment by moment. I say that for myself, because things can turn on a dime. My remission came out of nowhere, so it can happen to you too or anyone else who hasn't experienced a remission whether it be permanent or temporary. I wish you luck, freedom from pain and this awful illness. Thank you for your email and God Bless. Tee

dollh

Dear teeteem,
It is great that you have such a wonderful husband. I love my husband but right now he is making this whole thing much harder for me. He says I have let the drs ruin me (gain weight from meds, loss hair from meds and other side effects) but I think that the MTX is starting to work, but I don't want to loss all of my hair. Does most men get mad when they are scared? I think so but that really backfires with my personalty. We can't really talk about options because of his anger. He even goes so far as to say the drs are wrong and that who knows if I have sarc. I had a mediastoscopy and they biospied the lymp nodes in my chest and that show sarcoidosis. I have 14 granulanomas in one lung and 10 in the other. I think that I have a rather aggressive case and I am afraid that If I don't take medicine this disease will take, take, take. I am sick and tired of fighting this disease and my husband. I have no idea what to do other than stop all my meds and see how that goes. It is good to talk to you and others on this site. It is very helpful. Thank you.
God Bless, Dollh

kmb

Hi teetee,
I am sorry to hear you are going through the ringer again. I sure do hope that 2nd remissions can happen. I wont write my autobiography but my story is similar to yours, bad but not as severe. I can relate to regaining my life then having the rug pulled out again though. I had a bad spell, about 5-6 yrs then about the same amount of time in 'remission'. Then a year ago things started going south again. I thought i was over this sarc crap, then bam. It does seem like you say to be progressing at a faster pace than last time for me as well.
Every doc has a different view too. GI doc-gallbladder needs out.Surgeon-no sarc needs treating. Sarc doc- I dont think its the sarc again because it usually doesnt come back and you arent presenting as such, go see a Rheum, thats where Im at now, so a year is gone still no treatment.

You are so right about the pain too. My first go round i would be fine then would get cut in half and actually fall to ground and cry. Many ER trips w/ eye rolling, one doc even told my mother I needed to go to rehab!! Turns out it was in my appendix, ouch, judgemental assholes! Ended up w/ neurogenic bladder, sarc in every part of my GI trac, joints, lungs, etc. Finally found a pain doc who took pity on me, thank god. This is a scary disease. The docs used to tell me my pulse and blood pressure werent high so I coudnt be in much pain(my family has a history of low blood pressure). Now i have tachyardia and high blood pressure so they say "its a reaction to the pain meds, so we dont want to up your dose". Seems to me they just either dont believe you or dont care, possibly both. I mean if we wanted drugs it would be a lot easier to just buy them and not have to be scrutinized and degraded. I hope you get some relief soon.You sure do know better than some desk jockey at the insurance company what works best for you.
good luck, stay persistent,
Kristopher

corinne

Tee, Hang in there, we love you. I pray for all of you who are on this board and offer support to each other,. Tee has said for years that "friends" will tell her, " you do not look sick". What does look sick, look like?? As many of you have stated, even the people in the medical profession, are judgemental with out knowing what you are going through. It makes me crazy when I hear that stupid things that Doctors tell Tee and that others post.

pamk

I don't think remission is the right term. For me it has been active and inactive. Even when it was inactive and I had no symptoms and was sailing along, so I thought it was still quietly in my system causing unknown problems that I now know of. See I think the sarc once diagnosed is in our bodies just hibernating. Remission sounds to me like it is gone completely and then for some unknown reason its back.

My example is this; in the early 80's I was diagnosed with it in my lungs. I was not too sick, short of breath, a little tired, etc. Then my lungs were clear a year later. No symptoms. Inactive, 14 years later (1998) I fall and shatter my knee cap. Anyone can do that right? The surgeon told me my knee cap what was left of it was very soft. Ok but can you fix it? So he wired it together and it healed. A sarc lesion formed next to the scar on my skin. I was told it was a keloid no worries. No apparent symptoms for another 8 years. No sarc supposedly. 2005 coughing, pain in rib cage, tumor on elbow, eyes feeling awful blurred vision. Was told I have multi organ sarc. Lesions and pain in joints, bone errosion in my hands and who knows where else, enlared spleen which is normal again.

My theory is just cause we are asymptomatic doesn't mean sarc is not working in our system. I don't believe it ever goes away, just waxes and wanes. When we have no symptoms and go along for years it is great. When we become symptomatic we feel awful. Sorry to sounds like a pessimist but I guess I just have accepted it is a chronic disease that I will always have. Sometimes I am in charge and other times I feel it is in charge and my challenge is to conquer and get back in the driver's seat. But I feel it can "come and go" many times over. I just try to enjoy the ride while it appears to be taking a break.

heldav

I agree that sarc never goes away I was diagnosed 1987 with cardiac sarc found during heart surgery for what they thought was a tumor on my left ventrical causing VT attacks. I hadn't had any other symptoms at that time. I was treated with prednisilone, beta blockers ace inhibitors and fitted with a pacemaker. over the years I have had good times and bad times and VERY BAD times. right now I have bad skin lesions, Hip and leg pains ,What my GP calls Irritable Bowel,but I think it's probably sarc. at the moment most of my days are full of pain I sometimes think that 22 years is long enough! then I look at my family My husband is my rock he very rarely complains however miserable I am. I love to be with my grandchildren and I count my blessings I got to know them But like you all I very often have what I call I feel sorry for me days
Bless you all

mama-Kaz

Hi,I have had sarc for over 15yrs and I go in and out of it sometimes within 3 months then it can be over a year in a so called remission,Sorry you are having such a bad time with this how long have you had it ?? I dont recall you mentioning that,anyway hope you feel well( whatever that is for all of us) soon! take care MaMa-Kaz

BUNKIE

Tee,
I know I was in remission for about 2 years. I felt great and was actually starting to plan life agin. Bam!!! It hit again and I have never been able to come off steroids and pain meds . I deal with United Healthcare and they are equally wonderful. I ended up on SSD the last year and it has helped me with red tape and doctors etc.
You are so lucky to have an understanding husband and at least one good friend. I lost all mine too except one. My fiance even left me this past summer while I was asleep. Yep I woke up and he was gone without a goodby. Even on my worst days I never look that sick. Hair is thin but I fluff it. Minimal makeup and I still have problems explaining to people that I am very ill. I have trouble with my stairs and getting up from sitting. I also have horrible vertigo all the time. I was dragging down the steps one day and my fiance said " I bet when I am not here you run all over this house" Excuse me?
So yes I understand. You keep the faith and keep fighting. We are there for you.
Bunkie

stewarcl

My husband has "never" gone into remission since he was diagnosed 6 years ago. It seems everytime he has a bad flare he never gets back to the state he was in prior to the bad flare. My husband was on the fentanyl (sp?) suckers (had to get a pre-auth every time) for 3 months. It was the only thing that worked when he gets really, really sick (throwing up - where he can't keep his meds down). But had the same response from the insurance company. It was only available to cancer patients. We said the same thing "Why is Cancer the only disease that is approved for this pain meds - isn't Sarc bad enough?" But no one knows anything about Sarc and it doesn't hit the press as often as Cancer.

My husband is now trying the "brand new" medication called Nucynta 100mgs 3x a day is what our insurance pays for. It has been helping - so it might be worth a try - ask your pain mgmt doc if you can try (didn't need a pre-auth either).

Good luck and I'm so sorry to hear you are in so much pain! This disease sucks!

teeteeme

I am so sorry for all of you, Bunkie-your Fiance sucks! Nicole I think I read somewhere that your Fiance isn't supportive (I may be wrong) Dohl, My husband is having a hard time right now too. It isn't his finest hour. But I remember how great he has been for the last 4 years, and I know he will be a strong and supportive caregiver again, He tells me he just misses his wife, now he has a patient. Its true. But, you other girls, if they don't start out good, know this - it is only going to get worse! I was diagnosed in 1994. Sometimes I can't believe it has been this long. Where did my life go? One minute I was 27 and everything was fantastic and then I opened my eyes one morning I am 70lbs heavier, and I am 43, on my second marriage, and no children ever. I almost never leave our cottage unless its to go to a Dr. appt., I have tried to go for walks to lose weight, and two of the times, I broke ankles. No shit. Hows that for luck.
Kristopher, I have been told to my face, I should go to rehab. My pain Dr. laughed, he said "its nice that he cares, but he doesn't know shit, about pain management." Years ago I was on methadone, before I got cardiac sarc, and if it was a pharmacist that didn't know me, they would look at me in distain, and tell me to go to a clinic for my "dose", and this was in front of other customers!!! Oh, I would straighten them out, I would say, "If you would look at the perscription, you would see that it is from Stony Brook Comprehensive Pain Clinic, AND it is not for ONE pill a day, It is taken several times a day and as needed". "Now look me up in your computer, and give me my goddamn medicine and don't EVER speak that way to a customer again, or you can be sure, you will be filling perscriptions somewhere else, after I get done suing, and I own the place!" I was pissed!!! It happened about 4 times.
Did I mention, I was shy?? lol

This is important, whomever is in pain, MUST find a good reflexologist!! I had been going and it was helping a bit, but then the pain would come back. Well yesterday, when the pain on the back of my head was so bad, I couldn't even touch it (I was supposed to go get me hair colored, I had to cancel, because I knew I couldn't let her touch my scalp) well that and my thorasic and cervical spine, well my feet were killing me, I had bought a great book on reflexology and got out the chart. Do you know that every spot that hurt on my feet were coordinating places that hurt on my body!!! the tips of my toes felt like they had ingrown toenails and were burnt (skull, forehead, temples), the arches of my feet, felt like I had walked 20 miles in shoes with no support, (thoracic and lumbar spine) the ball of my feet just plain ached (cervical spine) Before I got out the book, my head hurt so bad, and I had a migraine on the left forehead and right temple (thoracic and lumbar spine) I could barely open my eyes. I started massaging my own feet, because my husband was working and I looked everything up in the book, within about 7 minutes, I felt about 60% better. That is good!! What a difference. I recommened that everyone at least try it. It is worth the money. Especially with what we shell out for pain meds., Then pick up a good book, mine is "The Reflexology ATlas" by Bernard C. Kolster, M.D. and Astrid Waskowiak, M.D. it is an oversized soft covered book, but the pictures and diagrams are fantastic. Ask alot of questions as they are doing your feet, this way you can have someone try to rub them at home, or do it yourself if you have too.
Lordy, I write long posts! I hope you all have a great day tomorrow and NO PAIN!! Stewarcl thank you for the info. and I agree about the cancer pain. Severe pain is pain. If someone has there leg cut off, would they say, "NO, you can't have it, you don't have cancer?" I mean, come on!! Pain, is Pain. Of course different levels, but isn't that why they have the scale of 1 thru 10 with 10 being unbearable?

Love to you all and thank you for the support,
this is why I love this site!!
Theresa

P.S. Corinne is my sister. She is a love. she just lives far away.

smormac

I had a 12 year break, then it activated again and is still active. Sometimes it's worse than others, but I always have symptoms. We could use a cure.

red99

I have gone into remission several times. In fact lately more in remission than flare up. Sarc is very much tied to your immune system. In learning to manage my illness I am very aware of trying to manage my immune system. I am careful of getting sleep. Doctor prescribed amitryptiline, 10 mg which she thinks helps fool my body into thinking it got enough sleep. I look for foods that are antioxidants. I drink immune system support drinks. I try to live a healthy lifestyle. I have massage therapy every 3 wks. All of this helps. When I feel I'm sliding, I do everything I can to stop the slide. Your can now even buy tshirts that say IN remission, In Flare up. Good luck

bigjoe

Dear "Just Pissed"

Me too!

Joe

showme261

I think pamk's posting is right. We don't go into remission. The sarcoid is there all the time, but it is an inactive mode. Its quiet and and we just don't realize its there.

BUNKIE

teeteeme,
Yup my fiance sucked but he is gone now. It took me some time to get used to living alone in this house but I am better. I would rather be alone than with a jerk.

I agree with you about where did the time go. It seems like last year I was 50, healthy and a workaholic. Driving down the freeway on my cell phone, taking conference calls with a hamberg in one hand and a soda nearby. I worked 14 hour days and went to the beach on the weekends. That was in 2002 before Sarcoid. Now look at me. Retired on dissability, can't move or sleep well. Asthma like I never had and a problem with all smells. My Michael Jackson mask ismy best friend. OK that was enough whine for today. I am alive and blessed to be able to move at all.
How ya feeling?
Bunkie

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