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Sarcoidosis anyone?

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#1 red


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Posted 28 March 2011 - 06:55 AM

Hi all, hope you are all having a good start to Spring. We've had a set back to colder temps here in New York this past week, including even snow flurries a few times!, but with daffodils, tulips and bleeding hearts poking through the ground, at least I know the warmth will arrive soon!

My rheumatologist called me on Saturday (!) to tell me my recent biopsy and blood tests show I now have sarcoidosis, another autoimmune disease, which finally explains a lot of the deterioration I've had over the past year: Haven't felt well since I had HlNl flu in 2009, then pneumonia and bad asthma thru the winter until Spring 2010 (treated with antibiotics x 2 and 4 months of prednisone), then major flares of arthritis, bursitis in hips, shoulders, wrists, worsening hoarseness (told by ENT after direct visualization exam that it was due to scarring from past reflux and fibrosis of the chords), new diagnosis of high blood pressure and diastolic dysfunction, then started developing hard lumps, initially only 4 or 5 on my elbows and fingers in December, progressing to over 100 now on elbows, knees, ankles, and I suspect in my hips as well because my knees and hips are so tight now I waddle like a penguin! And overwhelming fatigue - I sleep 10 hours a night and still can't keep my eyes open after lunch and usually sleep another few hours. My poor daughter has woken me on several occasions because she's afraid I'm going into a coma! :( After sleep apnea study was normal, the physician's assistant at the rheumatologist's office told me I had depression! :temper-tantrum: the old stand-by diagnosis when doctors can't figure out what's wrong with you!! After all, she continued, you "only" have the limited form of scleroderma, not the internal type! (Guess my GI tract, heart, blood vessels and vocal chords are external!!) Of course, her diagnosis was bolstered by the fact I burst out in tears with frustration, and said, Yes I very well may be depressed because over the past year, I've gone from a working nurse to a barely-walking/talking/awake person and every doctor I go to says there's nothing we can do for you. So I promptly got prescribed an antidepressant and was sent on my way, and waited until my regular 3 month followup with the rheumatologist, who finally ordered the biopsy of the lumps, which turned out to be "non-necrotizing inflammatory granulomas" highly suggestive of sarcoidosis, and blood tests for Vitamin D, calcium and ACE levels confirmed it.

Now that I've got that rant off my chest, whew, thank you for bearing with me!!
am wondering where I go from here. On researching sarcoidosis, I find the #l treatment for it is.....PREDNISONE!! I've been telling the doctors for years that the only time I feel close to normal is when I'm on prednisone, guess now I know why. I do understand the significant side effects of this drug, but my side-effects of NOT being on this drug seem to me to outweigh the risks at this point.

My rheumatologist said to expect a call from his nurse first thing Monday morning, to schedule an ASAP appointment with him to discuss further tests and treatment options. Am already scheduled for PFTs and pulmonologist yearly evaluation late April, and I know I need to schedule an eye exam (also started getting blurred vision over past couple of months, which I mentioned to rheumatologist at my followup, we thought it was a side effect of the antidepressant, was told to cut to 1/2 dose for a month, then discontinue it as it was not helping anything), but I've read that sarcoidosis can cause blurred vision as well...

Anyone out there with knowledge or experience with sarcoidosis? The rheumatologist said it's not an uncommon diagnosis in scleroderma patients. I'd like to be prepared for this appointment, and know what questions to ask, what follow up I should expect, etc.

Sorry to be so long, thank you all for listening!! :thank-you: Pity party officially over now :blush:

#2 Jeannie McClelland

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Posted 28 March 2011 - 09:14 AM

Hi Red,

I woke up to snow here in Denver too~

I'm sorry you've been stuck with additional diagnoses and even sorrier you've had to go through the "you're depressed" business again. Was your age or weight mentioned as well? :lol:

As it happens, I do know a bit about sarcoidosis because my oldest son has it. From his experience I can confirm that it often affects the vision and also the truly over-whelming fatigue. It's another one of the autoimmune diseases that has a variable course, affecting everyone a bit differently. It would seem that steroids are indeed the treatment most often prescribed, but some of the immunomodulatory drugs have been used with some success. My son was told that in some patients the disease will even resolve spontaneously. (I'll keep my fingers crossed for you both.) As you can see by the link, we do have some information on it and I believe we have a few members who have also been diagnosed with it who will hopefully see this and chime in.

I wish I could tell you more. My son is doing well and to be honest, I've been a bit of an ostrich. I didn't want to scare either of us by knowing "too much" about the possibilities since, like some of the nasties associated with scleroderma, it might never happen~

Will you post again as soon as you've seen the rheumatologist? I'll be thinking about you and hoping for the best.
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#3 kacklebird


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Posted 28 March 2011 - 11:10 AM

HI Red,

I'm sooo sorry you're going through so much and feel free to rant, kick or scream as much as you like. I know you were looking for others who may know about or have sarcoidosis, but I don't know much about that. I just wanted to respond to your posting as I feel so bad for you. I'm sorry too that you're feeling so badly. Shame on the P.A. at your rheumatologist's office for saying that your sleep issues are "depression" related. ughhh I agree there are some doctors, etc use that and or anxiety when they can't find answers to a problem. Yes, I'm sure you are depressed due to your present condition and who wouldn't be living with a debilitating illness?? Then for the P.A. to say you "only" have the limited form blows me away. It's obvious she knows nothing about the limited form or she wouldn't have said such a thing. I think I'd educate her the next time you talk to her and I think I'd also mention to your rheumatologist about what she said to you. Shame on her is all that I can say. Maybe your rheumatologist will want to move up the date for your PFT and maybe consider seeing an eye doctor for your blurred vision. Good luck and I hope some of the others here can give you info on sarcoidosis.

Hugs :flowers:

#4 Joelf


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Posted 28 March 2011 - 11:35 AM

Hi Red,

So sorry to hear that you've been diagnosed with Sarcoidosis, in addition to the other health problems you've been having. Certainly your rheumatologist's factious remark about "only" having Limited Sclero is enough to bring on a severe bout of depression! :angry:

Thankfully I've not had any experience of sarcoidosis personally, but I had a horse with a huge sarcoid which did actually resolve itself and disappear, as Jeannie has advised. (I'm keeping my fingers crossed for you and Jeannie's son as well!! ;) )

I'm sorry that like me, you may have to rejoin the Prednisolone Club, but hopefully it will alleviate some of the symptoms for you and you will soon feel much better.
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#5 red


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Posted 29 March 2011 - 06:36 AM

Thanks for listening and your support! Am trying to get past the anger phase - As I saw on a sweatshirt in a farmer's store: "It's time to put on your big girl boots and get over it!" :lol: Although it didn't help that the rheumatologist's office didn't call me yesterday - time to take control of things myself!! I'll be calling them after they open this morning, and also I'll call my eye doctor and schedule an exam. Maybe I'll give the pulmonologist a call too and see if they can move up my appt.

On second thought, maybe I shouldn't be trying to get over the anger - it is a great motivator and seems to be giving me a boost of energy. I feel empowered!! :woohoo: (I'll sleep later after all these exhausting phone calls :lol: )

#6 Sweet


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Posted 29 March 2011 - 07:37 AM

Hi Red,

Thanks for inviting me to your pity party, I love them!!! :emoticons-line-dance: Wow, some providers never cease to amazing me, you know the ones, they just hand out scripts because they have no idea what is going on. BUT it sounds like your rheumatologist is a bright one, and I like that you got a call on Saturday!!!

Yes, the dreaded Prednisone, what a love hate relationship. I'm all for feeling better though, so I look forward to hearing how you do! :flowers:
Warm and gentle hugs,

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#7 Amanda Thorpe

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Posted 29 March 2011 - 04:46 PM

Hello Red

Sorry you have yet another autoimmune disease to add into the mix but then again you "only" have limited scleroderma! :lol: The lady in question obviously confused limited with localised. :blink:

I think that you have good reason to rant and have a pity party and I'm sorry I came in late. Please let us know how you get on with your upcoming appointments.

Take care and keep posting.
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#8 Shelley Ensz

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Posted 30 March 2011 - 10:08 AM

Hi Red,

I'm very sorry you also have sarcoidosis, but I am hugely relieved that they finally diagnosed it for you. I don't know much about it, so I hope you share with us more information about it's symptoms, causes and treatment as you go along to help raise awareness of it among our susceptible group.

It's simply awful what you went through on the way to getting diagnosed with sarcoidosis. All I can tell you is that it is a perfectly normal experience to have our initial symptoms being written off as psychosomatic or depression. Many of us have been there, done that, although I can't say that the sense of estrangement that arises from that ever resolves entirely. It does leave a lingering fear that we will be treated that way again, by someone who doesn't know about or understand our disease(s).

Here's a warm hug, just for you. I hope you find it comforting, encouraging, and empowering to help compensate a bit for what you've been through so far. Don't you just want to scream from the rooftops sometimes that Limited Scleroderma is not Localized Scleroderma? It is so everlasting confusing!

Warm Hugs,

Shelley Ensz
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