Sarcoidosis Necrosis

Posted , 5 users are following.

i have just been told I have this at the top of my spine one week ago. I have been on Prenisone IV for 3 treatments and 110 ML tabs per day for the next 4 weeks. The Lung doctor has told me zero except not to miss that 4 week appointment. Is this usual? The only question he asked was if i had kids. I said, no. I was told this is genetic condition from another doctor. Any one else have this type?

1 like, 24 replies

Report / Delete

24 Replies

Next
  • Posted

    Hello dina46599,  I have never been told it's a Genetic Disease but they may have a lead? for myself I'm the only person in my entire family that has this and I have gone way back to my original Family Roots, way back to the the Danes, the Norman and so on with nothing odd in my Ancestors deaths, For myself who was very healthy person until I was around 22 years of age then bang everything changed, but I do know what my triggers are they being Pine trees, Deadly Night Shade and some Molds, as a child I lived pretty in Pine trees until my immune system decided to stop working. Ever since i cut down some Pine trees at the Family home back in 1986 I become weak & sick the Specialists mentioned in the Northern Hemisphere the rates of Sarcoidosis are much higher due to Pine trees in the regions but back then when I was diagnosed that was only a theory but looks like one possible cause in having this horrid disease and there are others Genetic could be one other way but each person suffers differently and is never the same with this disease so many theories still being worked on to this day.  As for keeping the appointment, I guess they are tracking the levels of this disease checking for some improvement if not they can correct by more medications like they had done with me but I was used like a guinea pig back in the day as Sarcoidosis was unheard of very rare plus they were only guessing a fair bit also until they got the right degree of medications to give me but each person will be different, they do have extra knowledge today on what works best for each person.

    Report / Delete Reply
    • Posted

      Black Mold is a very nasty thing with me also I can detect that from out in the street if a house has it, the problem or the gift I like to call this is my senses are highly tuned to detect these triggers, like when driving through Pine Plantations or on windy days I will shut vents in car or avoid going out on windy days which is hard to do for I'm a sports trainer that is always out in the elements and when I do take a turn it's a pain for it's like having the Flu with joints aching, I get tightness in breathin, next day I will have more congestion in my lungs more than usual plus my eyes are always burning but will get more intense, But in saying that I have learnt to manage myself by preparing around these triggers by taking notice of my body by being prepared. I always get my Flu shot including other tests every year just to keep on top of things but each month I will go into the Dr's just for piece of mind even when my Wife has an appointment with him I will tell him how I'm going for my Doctor has some knowledge on Sarcoidosis and is very interested as he says it's a rarity to have someone with this disease as he was learning to become a Dr in England and had done a thesis on this disease saying it was more common back there but still rare but is aware of the problems that go with this disease.  All I can say is stay Positive as I have done it will get you down at times but with myself I just push through it it's not going to hold me down without a fight.   

      Report / Delete Reply
    • Posted

      Hi There Chief

      ​I know no other people with my condition or Sarcoidosis period. I am so glad I stumbled across this page last night. I was feeling so alone. My husband buries himself into the tv. So at least I can learn from others here and connect. Thanks again

      Report / Delete Reply
  • Posted

    My dr.s think its auto immune or inhaled.  My two children are not affected so far and  no one in my family.  its considered an orphan disease (rare) so I think a lot of people/drs are guessing.  I have Neurosarcoid but sarcoidosis necrosis is one I hadnt heard of.  I too Acthar gel had way less intense side effects than the Prednisone but was same class of medication....when that was not fast enough he switched me to Methotrexate and Humira which Im waiting for the Humira to be approved so I am just on the Methotrexate for now.  I would definately keep that appt.  I was seen a ton when I was newly Diagnosed (biopsy proven February 1st 2017) so maybe thats a standard when newly diagnosed to try and track the progression and hopefully see some improvement...eitherway I would definately keep it those or incredibly high doses of Prednisone....I hope its working!

    Good Luck!!!

    Report / Delete Reply
    • Posted

      dina, sorry to hear that you have this illness. I was just recently diagnoses myself but still waiting for more tests.

      Metho is one of the most commonly used meds to treat sarc. You'll see it mentioned often here. Drs should know about it.

      I wish you good luck. Nothing breaks my heart like seeing people suffer.

      Report / Delete Reply
    • Posted

      just google it.  Prednisone seems to be the first one they try.  But prednisone has a lot of side effects.  most people seem to tolerate them tho. and it works fast.  Then I guess they go to methotrexate a chemo class drug...but in much lower doses and lastly Anti TNFs  like Humira and remicade.  I would try googling and then go to a site like web MD or something, a trusted site. 
      Report / Delete Reply
    • Posted

      Thanks for the support-I return it to you kind-At least folks here are walking with me. The outcome I can only surrender....but I am fight like hell until then! Love, Laugh and Live.
      Report / Delete Reply
    • Posted

      I woke up March 19th 2017 with my left arm numb. The arm felt funny. Pins and needles. Right hand only. I went to our small local hospital, they said"TIA" stroke. But that got me to our larger hospital 3 hours to the south. I have under gone many tests from March 28-Apr.5/17. The lung said very little. He told me not to miss my appointment in 4 weeks time. Perhaps I'll know more when all though test results are in, which I'll share here.

      Report / Delete Reply
  • Posted

    Hi Dina,

    Is your sarcoidosis "in" in your spine or "on" or spine? I ask as I have sarcoidosis lesions on my spine and have ask 101 questions and did a ton of research. I was told if it's in your spine then it is considered neurosarc but if it is on your spine then it is considered sarcoidosis of the bone. I was diagnosed with sarcoidosis in my lymphs and lungs first, then my bones a few years later, then they found the lesion on my spine and most recently they have determined sarcoid has attacked my hypothalamus, affecting my pituitary causing adrenal insufficiency and hypothyroidism. Wow I got off topic!

    I started my journey in 1999 but was sick several years before they figured it out. My treatment path has been prednisone, then they added methotrexate, plaquenil and folic acid. After several years of tweaking these medications to different strengths, I was moved to humira injections. A year later, due to low results, I was moved to remicade infusions. Now, about 2 years after my infusions started, I am back to taking plaquenil, methotrexate, and folic acid and they have moved my infusions from every 8 weeks to every 4 weeks.

    The good news though, however, is that most folks who are diagnosed with sarcoidosis do very well with first line treatment (prednisone). Their battle peaks and subsides in a 3 year average. That is awesome statistics! I hope you fall into that category!

    As for sarcoidosis being genetic, I know some doctors feel it is but last I checked there are no supporting documentation saying such. It can however run in a family, whether that be due to their surroundings or what. Every specialist I have seen, and I see one of the best in the nation, still says it is not heriditory.

    Best of luck to you!!

    Deb

    Report / Delete Reply
    • Posted

      Deb Where are you (state)?  I would love to go to your doctor.  Im newly diagnosed but no new to sarcoid they have so far traced me back to 2015.  but I was just diagnosed 2/2017.  in 2015 I had the lung sarcoidosis that presented as pleurisy and was misdiagnosed as pneumonia....5 times sad  that, thankfully completely resolved with not perm. damage (as you said it could smile ) I have since gone blind one eye and starting to go deaf 1 ear...seriously no big deal adapting really well but the MRI shows it on the brain so I am considered Neurosarc...again as you described its "in" not "on" if that makes sense.  I do not do well with pred and because my eye continues to worsen they have advanced me to Methotrexate and as soon as it approved Humira...but yes if I could tolerate the Pred it was having desired effect so other than side effects...thats a great drug and it helped me through the lung part.  I am glad to see that you are improving....did they ever do Methotrexate and the Humira together? and what dose was your Humira?  he seems to have me on a high dose...insurance is saying its high so they are fighting it.  he considered remicade but since it is same class he said Humira is better tolerated (more "humanized"wink I see that one didnt work as well for you but do you recall side effects?  Im really struggling with the Methotrexate Side effects and I am on the injections but I still get horrible fatigue some nausea and general not feeling good...normally I am lucky, active feel great no aches and pains generally feel well...its weird for me because I am lucky I guess the disease does not make me feel bad (despite blindness) but the meds do sad  so its hard to go from 0 meds last October when the Vision went to seriously about 16 oral and 1-2 injections crazy! a lot of my oral meds are supplements to help support my immune system, the profilactic antibiotic 3 times a week and folic acid....so some of them are good for me LOL.  any thoughts...you seem like you could be a great resource of "been there done that" for us newbies smile

      thanks!!!

      Report / Delete Reply
    • Posted

      Hi Magghe!

      I'm in Ohio, my specialist is in Cincinnati. 🙂 Have you ever visited the sarcoidosis foundation website? They should have a listing of sarcoid specialists in the various locations, if that would help. You've sure had your share of struggles! Goodness. I've been pretty fortunate in that I've had few side effects with humira or remicade. Like you, prednisone and I did not get a long AT all, I always gained oodles of weight and started getting careracts in both eyes. So glad to be away from that medication!! 😃 Humira is a 2nd level Med and remicade is a 3rd level, if I recall. I didn't do methotrexate and humira together, nadda. I don't recall my humira dosage ... hmmm ... dang, I forget. 🙄 I think it was 1 shot every 2 weeks. I'm not improving, unfortunately, my lungs did like yours ... got controlled before destroyed ... but my bones are another story, we just can't seem to get them under control and keep them under control. I also have ankylosing spondylitis which is autoimmune and effects the back bones so it's like a dual edge sword. 😳 I'm special 😂. Oh boy the meds ... I hear ya on the numbers! I'm on 28 plus the remicade infusions! UGH. But I still feel blessed, every day is a new day and I will take it. 😃

      That has to be scary about your eyes. I'm lucky that it has attacked my eyes. I have dry eyes, which am told is from it, but that's it. I've read that the sarc in eyes .. like your blindness .. can be controlled and reversed when put into remission, does your doctor tell you that? I've never "asked" since I'm not affected but that would be amazing if so.

      A lot of people do very well and react to the humira so if your having probs with methotrexate you might give it a try. It has more "possible" long term effects, like it specifies a cancer, I'm thinking it was lymphoma but am not certain now, but if you really do your homework the cases were very very few and the potential benefits were high. Def an individual decision! I teetered before deciding and did a LOT of reading!!!

      I'm happy to help any way I can!! Ask me anything! 🙂🙂

      Report / Delete Reply
    • Posted

      Oh Ive heard of that clinic..in fact I was emailing one of your doctors at the begining he WAS SO NICE!! loved him....wonder if he was same.  I use the Cleveland Clinic..another Ohio sarcoid clinic...but not as big as the Cincinati one from what I understand.  My Dr said the Humira and remicade are both anti TNF .. same class I guess and the strongest they have.  the only good thing about Humira is it is supposed to have less allergic reactions than remicade and it is also supposedly better for the blindness.  My insurance is struggling with wanting to pay...they actually want to pay for the remicade more than the humira and that is more expensive plus I would have to go in for infusion instead of doing it on my own.  He is trying the methotrexate and the humira together (if ever approved) to attempt at regaining some central vision (hes young and wants to "fix me"wink im so well adapted now I dont care if I get it back...just save my good eye wink.  if they dont approve the Humira quick I may ask Dr. to try the remicade.  The insurance thinks he has me on too high of a dose of the humira but that is what 5 doctors (3 sarcoid specialists and 2 eye doctors) think is best for what my eyes need.  Its hard that my Dr wants to fix me so much it makes me sad for him...I keep telling him one day he will have to accept Im not going to see again LOL...hes adorable.  He still hopes...he says I could have up to a year to reverse the "brain damage" LOL funny isnt that!!. He did purposfully permanently destroy some of the vision from ever returning...all in the hopes of regaining the central.  I was starting to sprout new vessels and it would (I guess) threaten to detach the retina....I am glad you didn't see many effects from the humira that helps me...hows the remicade?  the Methotrexate is starting to make me lose my hair sad I really thought I wouldn't since its lower dose Chemo that real Chemo but I guess Im just soft smile.  I have extensions because I was growing my hair out...but I think they are the only reason I dont see patches...I think they are holding some of the hair there because it looks a small puppy in the shower lol.  I know itll come back but it was just getting long so Im a little sad...cool thing is it will be fresh virgin hair LOL. but oh well.   Yes definately glad I am away from the prednisone.  the Acthar was definately better but just not strong enough for my case...but other people out there might benefit IF we can get the price down some how.  but it does still make you gain the water wgt but they use Aldactone to combat that....it never increased my hunger so I didn't put on real wgt and I was on a hefty loading dose.

      thanks!!!

       

      Report / Delete Reply
    • Posted

      LOL you crack me up! I love that you have your sense of humor through all of this. Talk about inspiring for others! 😃 I've been to Cleveland Clinic many times for my sarcoidosis!! Most recently just in January even. I saw 6 different specialists and 2 or 3 of them were sarcoid specialists. One was from the pulmonary team, Dr. Riberto, and then I saw neuromuscular but that doc was leaving to move to Chicago 'that day' lol. I saw endocrinology ... they pretty much determined I have hypothalamic sarcoidosis which in turn means neurosarc ... yay! 😜 This caused my pituitary to flake out, so I stopped producing several hormones and steroids my body demands to survive this causing adrenal insufficiency (requiring a different steroid with a life sentence!) and causing hypothyroidism (requiring yet another medication with a life sentence)!! Sarc just keeps giving and giving to me it seems lol. 🙄 I also saw an eye doctor there in November, it was a strange name but I think it was Dr. Kosmorsky. I had 'visual disturbance' lol and he called it hallucinations but I wasn't seeing things so much just screwed up vision LOL but come to find out it was my migrane medication. Anyway!!

      I will say that once they moved my remicade to every 4 weeks, the texture of my hair changed. I ended up getting it cut pretty short! I've went through exactly what you're going through, especially with prednisone!! It was the most evil drug I've ever taken. No gal wants to lose her hair lol. Nope! I feel your pain!

      That is amazing your insurance prefers remicade over humira! Humira is sooooo much cheaper. My remicade was being billed at $xx,xxx per infusion! Every 4 weeks! I don't know what it is now as they just changed how it's being billed but I about choked when I saw the cost. I remember humira wasn't cheap either but goodness!!

      I have some friends who feel tired and overall ill after their remicade infusions but 'knock on wood' I've done pretty ok. The sitting for the infusion makes me hurt more than any side effect lol.

      Report / Delete Reply
    • Posted

      I see the same one dr. riberio (or however he spells it) but Id like to switch he doesn't call when he says he will...and a lot of this is new to me so I have lots of questions...so if he says hes gonna call...then I wait on him for that...he also he doesnt get good covering drs. like Ive said they dont like my "complicated case" I have read other peoples stories on here that are a whole lot more complicated than mine!.  love my eye dr though he just the cutest.  I thought the same on the remicade vs humira...thats like couple thousand a dose compared to10s of thousands a dose.  crazy.  Id prefer the infusion being one and done even though it seems a little stronger.  Humira will be 4 shots, 2 weeks later 2 shots, 2 weeks later 1 shot weekly...thats added to my weekly methotrexate shot.  Bob baughman was the guy from cincinnati.  He didn't sign his emails with "dr." or "MD" so I cant remember if he was a dr or nurse or what...but he was super nice and gave me a lot of info so if you ever see him tell him thank you (not that he would remember me from February but still it was nice of him smile anyhow take care.   keep updating us and thank youfor your kind words.

      Report / Delete Reply
    • Posted

      THANK YOU!!!  yes I just signed up for that and it comes with a nurse ambassador for questions....I have tons!! but since I havven't been approved yet I will wait to ask them.  I expect Dr. Riberio to hopefully call today so I wonder if he will give in to the damn insurance and put me on Remicade.  I leave for vacation soon now though so I wont be adding anything new at this point because I will be too far away from my docs and family.  The Methotrexate is going to ruin my last few days there enough as it is LOL so it will be a few more weeks before I worry about it now..  Even if I received the meds today I wouldnt take them even though people have said the SEs are low or tolerable.  I owould want docs familiar to me and my family around me just in case not to mention just to me at my own house...not some strange place lol  thank you though for that info!!!

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up