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bboxer
@bboxer

Posts: 16
Joined: Dec 12, 2016

SARCOIDOSIS

Posted by @bboxer, Dec 25, 2016

I’m very interested in creating a discussion group with other patients being treated for pulmonary sarcoidosis and how they’re dealing with it. I was diagnosed ~ 10 yrs ago and it is unfortunately gradually getting progressively worse spreading from my lungs to other parts of my body. I’m mainly interested in what others have received for a prognosis and most of all how they handle the, at times, somewhat debilitating pain (primarily rib cage) that goes along with it.

REPLY

Hi @bboxer,
I’d like to introduce you to several members who are discussing sarcoidosis (pulmonary and neuro). Please meet @josephene @irene5 @chesneydell1965 @rayrachel @rickys. You can read their discussions here:

– Sarcoidosis in the Autoimmune Diseases group http://mayocl.in/2ixthUD
– Neurosarcoidosis in the Brain & Nervous System group http://mayocl.in/2hot44e

bboxer, You ask great questions. Would you get us started off by telling us what you know about your prognosis and how you manage the pain you experience?

@colleenyoung

Hi @bboxer,
I’d like to introduce you to several members who are discussing sarcoidosis (pulmonary and neuro). Please meet @josephene @irene5 @chesneydell1965 @rayrachel @rickys. You can read their discussions here:

– Sarcoidosis in the Autoimmune Diseases group http://mayocl.in/2ixthUD
– Neurosarcoidosis in the Brain & Nervous System group http://mayocl.in/2hot44e

bboxer, You ask great questions. Would you get us started off by telling us what you know about your prognosis and how you manage the pain you experience?

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I’ve been seeing my local pulmonologist since being diagnosed. ~ 10 yrs ago. All he’s really been doing for me for the last few years is readministering some breathing tests to see if there’s been any improvement or worsening (definitely the latter!) and renewing my script for prednisone which I’m doing fairly well with but experiencing some if not all the usual side effects. I had been going to U of F Shands Med Ctr semi-annually for a 2nd opinion for a couple of years per his recommendation. Shands switched me from prednisone to methotrexate and the only other thing they did was initiate some dialogue about possibly receiving a lung transplant. After doing some of my own research and talking to a few post transplant patients I decided it definitely wasn’t an option my wife and I wanted to pursue if at all possible. As the saying goes “the treatment seemed worse than the ailment! I am now back on prednisone because, apparently erroneously according to the folks at Mayo, was informed that I had exceeded my lifetime allotment of methotrexate.

I’ve had a half a dozen or so appointments with all kinds of specialists @ Mayo during the last 2 months and a couple more in January when I expect to get a prognosis. As far as pain management is concerned, which is rather severe at times, I’m taking very small dose of hydrocodone on an as needed basis which has been very, very effective. I’m also pursuing some herbal, homeopathic remedies.
The long and short of it is, the sarcoid can be rather debilitating at times but I’m learning how to deal with it so it doesn’t always control my life. It’s had its affects on my marriage but my wife is usually pretty patient with me and very supportive even though we’re now separated but reconciling.

btw, our experience at Mayo has been nothing short of FANTASTIC!!!

@colleenyoung

Hi @bboxer,
I’d like to introduce you to several members who are discussing sarcoidosis (pulmonary and neuro). Please meet @josephene @irene5 @chesneydell1965 @rayrachel @rickys. You can read their discussions here:

– Sarcoidosis in the Autoimmune Diseases group http://mayocl.in/2ixthUD
– Neurosarcoidosis in the Brain & Nervous System group http://mayocl.in/2hot44e

bboxer, You ask great questions. Would you get us started off by telling us what you know about your prognosis and how you manage the pain you experience?

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I’m happy to hear of you and your wife, and to know the marriage streighn is real.
As I want to beat the husband some days.
He also has neurosarcoidosis his mind isn’t what it once was , this is very hard for him he is very old school so he can’t always do the things he once did for me, and for him to except the face I have to be husband wife nurse and bad guy is hard on him, then rolls down hill to me uhg.
I’m scared of what each day brings if I could take it away I would , I wish something more could be done .
Very debilitating normal doctors treat him as tho he was a hot potatoes they know nothing there for pretend it isn’t happening.
We are lucky to have a great neurologist who listens and is helping so far
Thanks you for writing something back I thought I was falling on deaf ears here too
Lost

Hello bboxer, I think you have a very good idea. I was dx w/ Sarcoidosis 8 years ago. I have stage 4 Sarcoid. I have it in my Lungs, Heart, Kidneys,
Liver, bone Marrow, Pancreas, Spinal Canal, actually it has spread to all of my major organs except my Brain. I also have alot of pain, sometimes its so
intense I can’t function thru out the day, I need to lay down & rest multiply times. B/c of Sarcoid I had to have Heart Surgery, both of my Knees, my gall bladder needed to be removed. For me once dx. it rapidly spread thru out my body. I was recently informed that my only next option is Chemo Therapy.
But as of right now, my Heart is to weak, and I probably won’t make it thru. I even had one Dr. tell my husband & I, that I was going to die from Sarcoid
related issues. That really made our day!! I have been thru so many medications, and had extremely severe reactions, which had put me in the Hospital for
days. B/c of Sarcoidosis I have had 4 Heart Attacks, 2 which I died and was revived. I now have a Pacemaker/ Defib. But these past few days, my Heart
beat was been extremely high, which means I have to go back in the hospital for surgery, once again. I unfortunately fall into the small percentage of
patients that will have this illness for the rest of my natural life. I just wish that it will just ease up a little. It has taken such a toll on my family, its sad. And I
also think that more needs to be done to bring this Illness to the forefront, so maybe more money will be allotted for research. This way the Drs. we have to
deal with are more knowledgeable about Sarcoidosis, instead of just putting us on all types of medication, most of which who knows what kind of reactions we will experience. Some reactions could be deadly.
I have accepted this prognosis, and I live with it, each and everyday brings something new. I refuse to take any pain medications b/c, of my Liver. I take enough meds, that r effecting my organs. Its nice to be reading that Im not alone in this, it would be great if more people would join this site b/c we could
learn and maybe discover different methods of therapy to help ease up some of the symptoms of this awful virus.
Hope everyone has a Happy & Healthy New Year. Keep writing,
Mo

Riverotter
I just read your post, I’m so sorry how this nasty disease has ravaged you.
My husband has both sarcoidosis once DX like you said it spread to his feet and neurosarcoidosis
You spoke of stages of sarcoidosis. Could you explain. Or send a link we have not heard of this yet.
The heart doctor has cleared him said no heart issues. Lung doctor says minor changes nothing to worry about. But he still has this chest pain the keeps him in pain in bed. Any ideas as to what this could be ?
Tammi

Hi, I am going to jump in here because I had nodules removed from my lungs which I was told was sarcoidosis. This was five or so years ago. None of doctors ever said much more about it. so I had no idea what stages and forms it could take. I have a lot of different health problems. Finally found a doctor that seems to be trying. I have dizziness, nausea, blurred vision and some other persistent symptoms. I was diagnosed with COPD (bronchitis) some time ago. Presently, we are looking into low oxygen level. I had a finger monitor test last night. I may push my doctor more on sarcoidosis, depending on what I learn here. Thank you all.

@ryman

Hi, I am going to jump in here because I had nodules removed from my lungs which I was told was sarcoidosis. This was five or so years ago. None of doctors ever said much more about it. so I had no idea what stages and forms it could take. I have a lot of different health problems. Finally found a doctor that seems to be trying. I have dizziness, nausea, blurred vision and some other persistent symptoms. I was diagnosed with COPD (bronchitis) some time ago. Presently, we are looking into low oxygen level. I had a finger monitor test last night. I may push my doctor more on sarcoidosis, depending on what I learn here. Thank you all.

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My husband was diagnosed with sarcoid in 2001 after previously being treated for what the doctor thought was asthma. It was diagnosed accidentally by an X-ray. He then was seen in Boston and had a lung biopsy to confirm it. Since then he has been on prednisone infrequently and continuously on inhalers. Sarcoid is either active or inactive. It can be either at any given time. A recent CT scan with dye confirmed that my husband’s sarcoid was inactive. His is in his lungs and around his heart. He has low oxygen levels most of the time. This has to be closely monitored when having any procedure. Our neighbor also has sarcoid ( hmm), but his was very debilitating as it affected many organ systems. He was diagnosed around the same time. His is inactive now as well, but he really suffered. If you have sarcoid nodules without other debilitating symptoms I am guessing your sarcoid is inactive. There is no cure and no known cause ( only conjecture) as to how a person contracts sarcoid. Sometimes it is seen on X-ray as “old” sarcoid. Best of luck, and I hope this gives you a bit of information. Irene

@ryman

Hi, I am going to jump in here because I had nodules removed from my lungs which I was told was sarcoidosis. This was five or so years ago. None of doctors ever said much more about it. so I had no idea what stages and forms it could take. I have a lot of different health problems. Finally found a doctor that seems to be trying. I have dizziness, nausea, blurred vision and some other persistent symptoms. I was diagnosed with COPD (bronchitis) some time ago. Presently, we are looking into low oxygen level. I had a finger monitor test last night. I may push my doctor more on sarcoidosis, depending on what I learn here. Thank you all.

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Thank you. A few years after the nodules, I had some bad symptoms and was eventually diagnosed with Lyme. After three weeks of antibiotics, I was much better but in a few weeks the same symptoms came back. Things I have heard since make me wonder if it was Lyme but I had been bit by a number of ticks. I changed doctors and she is looking at my kidneys, liver and back to COPD, most specifically now at low oxygen level. I keep looking for anything that will get me back to being active again. I had no idea there was this much to sarcoidosis. I just keep looking. My best to you to you and your husband. Hope his stays inactive.

I am a 51 yo widow whose husband died of a rare muscle disease 3 years ago. After his death, I was dx with Sarcoidosis. I have so much pain and breathing problems. The ER said the CT Scan revealed that it is progressing. When I returned to my PCP, he asked me if all my symptoms were in my head because I am also Bipolar. It has been rough. It is hard supporting myself. I am on disability, but I work part-time to pay for medical bills and medicines. This is wearing me down. Nobody knows what it’s like, not even my family.
All Alone,
Karen

Liked by wbuawxman, jo54

@clay1969

I am a 51 yo widow whose husband died of a rare muscle disease 3 years ago. After his death, I was dx with Sarcoidosis. I have so much pain and breathing problems. The ER said the CT Scan revealed that it is progressing. When I returned to my PCP, he asked me if all my symptoms were in my head because I am also Bipolar. It has been rough. It is hard supporting myself. I am on disability, but I work part-time to pay for medical bills and medicines. This is wearing me down. Nobody knows what it’s like, not even my family.
All Alone,
Karen

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Sarcoid is a tough one Karen. It’s not in your head. It’s in your lungs! 🙂 Sorry some doctors are insensitive. Prednisone is a help and of course inhalers, but your bipolar meds might interact with a steroid. I don’t have that kind of info. What I will suggest is you see a lung specialist to determine how best to ease your symptoms. There is help! So sorry for your loss and sadness.

@clay1969

I am a 51 yo widow whose husband died of a rare muscle disease 3 years ago. After his death, I was dx with Sarcoidosis. I have so much pain and breathing problems. The ER said the CT Scan revealed that it is progressing. When I returned to my PCP, he asked me if all my symptoms were in my head because I am also Bipolar. It has been rough. It is hard supporting myself. I am on disability, but I work part-time to pay for medical bills and medicines. This is wearing me down. Nobody knows what it’s like, not even my family.
All Alone,
Karen

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We see a great neuro doctor my husband has neuro sarcoidosis this is sarcoidosis in the brain basically And sarcoidosis he is agressive at treatment , he is in fort Wayne Indiana he has listened and treated never judged us

The neurologist I have now is looking into my sarcoidosis. After having nodules removed from my lungs years ago, none of my doctors said anything about sarcoidosis. But now I have lesions in my brain. I am concerned it may be neurosarcoidosis. I am having a spinal tap Tuesday. I expect this will provide some answers. I did not realize this was such a serious disease. All I had read before seemed to play it down. I am so sorry for what some of you are going through.

@chesneydell1965

Riverotter
I just read your post, I’m so sorry how this nasty disease has ravaged you.
My husband has both sarcoidosis once DX like you said it spread to his feet and neurosarcoidosis
You spoke of stages of sarcoidosis. Could you explain. Or send a link we have not heard of this yet.
The heart doctor has cleared him said no heart issues. Lung doctor says minor changes nothing to worry about. But he still has this chest pain the keeps him in pain in bed. Any ideas as to what this could be ?
Tammi

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Hello. Boxer, Sorry it has been a while since I was able to write back, i have many complications since we last wrote. I meant to tell you and other people who are seeking more answers regarding Sarcoidosis. There is a fantastic website that is strictly designated for this horrible unanswerable virus. The site is Team Inspire.com, it site is world wide, you will be surprised at how far reaching this crazy, don’t know how, why or where, I could’ve come in contact with this illness. Give it a try, maybe some answers you have & im sure there r plenty, might be answered. I open all doors, where I could possibly find a answer, or some new information regarding an illness that many people are being Dx with. Some answers are very helpful and some are not, some r happy, and some are sad. But that’s a reality people who have this type of virus must come to terms w/ some of us will go into remission, but unfortunately there are those that don’t. I do know one thing is sure STRESS, will bring any Sarcoidosis that’s in remission to start to ravage our bodies again, & again, only each time it comes back it’s WORSE. One of the hardest things a human being can try to do and that’s avoid stress, not these days. So what r our other options, some r in a constant battle w/ pain, some get so depressed b/c they feel very alone & a burden to their love ones, some r able to get in a few minutes here n there of stretching, or walking, but tire easy, and then there r those who breeze thru this virus w/ no problem or care in the world. I have met both types. Thru talking and reading about different levels of Sarcoid, is a very good thing, we learn about how other people r dealing with this at different stages.
Sometimes it’s the unknown that scares us the most, I know it scares the heck out of me.
And I’ve been thru the ringer & back again, & it’s not any thing to laugh about.
You will find that the Team Inspire.com page has a lot to do with the Mayo Clinic, the Mayo diet is strongly encourage, helping us to learn how to cope with all the things that come from Sarcoid. It’s a great benefit that these 2 websites r available to us, we meet, learn, cry, laugh, share, understand, and feel better. We also see that we r not alone, and everyone tries to help each other cope. Well now that I’ve said a mouth full. LOL
Please keep in contact, as I would love to know how everyone is doing, and at anytime you might need to have a shoulder to lean on, or a ear to listen, or to hear a good joke, and laugh a little I’m available. Please don’t be shy,
Everyone please feel better, &. Stay safe
Mo

Liked by wbuawxman

@clay1969

I am a 51 yo widow whose husband died of a rare muscle disease 3 years ago. After his death, I was dx with Sarcoidosis. I have so much pain and breathing problems. The ER said the CT Scan revealed that it is progressing. When I returned to my PCP, he asked me if all my symptoms were in my head because I am also Bipolar. It has been rough. It is hard supporting myself. I am on disability, but I work part-time to pay for medical bills and medicines. This is wearing me down. Nobody knows what it’s like, not even my family.
All Alone,
Karen

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Dear clay, U R NOT ALONE, I know it’s a lot easier to say than do. But believe me u r not alone. Everyone goes thru the trials & tribulations of every day LIFE. Some of us more than others. There are many programs that help people who truly need it. This crazy virus is not in your head at all. You have been thru a lot, unfortunately Sarcoidosis starts to react to the Stress ur body goes thru when dealing with such tough situations, that you have had to endure. You really need to open up a line of communication with someone, you feel comfortable with, family member or a friend. You are a young widow, and this Dr needs to be more understanding, instead of making comments like that. It only shows his ignorance
and well, lack of knowledge about Sarcoidosis. I don’t know where u live but there r many Drs. Who take on patients who r on disability. U should also make an appt. with a Pulmonary Specialist who knows about Sarcoid, you should also ask him if knows of a good Dr. u need to find one. I am so sorry, u have to deal with so much by yourself. We all need a good support system, if it’s not family then friends old or new, could be very helpful. U know u don’t say if u have any children. If u do, and their older they could be a great support, we as adults, don’t give the young ones a chance, they have a different way of looking at certain things going on. We just have to be careful, as sometimes their ideas could be quite outlandish, but they will most definitely make u laugh. Thru the tough times & thru the bad.
If u you like you could write me & we could be pen pals, I promise you I will write you back. No doubt, no one should feel or be alone, it’s a horrible feeling. Remember it’s always good to meet new friends.
I hope you start to feel better soon. Remember you can write, anytime, I have insomnia, one of the pleasures of having Sarcoidosis, LOL
Mo

,

@ryman

The neurologist I have now is looking into my sarcoidosis. After having nodules removed from my lungs years ago, none of my doctors said anything about sarcoidosis. But now I have lesions in my brain. I am concerned it may be neurosarcoidosis. I am having a spinal tap Tuesday. I expect this will provide some answers. I did not realize this was such a serious disease. All I had read before seemed to play it down. I am so sorry for what some of you are going through.

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That’s how they found neurosarcoidosis on my husband was a spinal tap, he has seizures everything has changed including he gets mean and moody, smells and food has changed

Liked by clay1969

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