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Everything posted by red

  1. red


    Hi Marsha, is today the day you start your plaquenil? I've been on it for a few years now. I remember it mildly bothered my stomach - queasiness - when I first started it, but that side effect went away within a couple of weeks. My rheumatologist warned me it would take up to 6 months to feel an appreciable effect, and yes it did seem to take that long for me to notice a gradual lessening of my fatigue issues. I did stop working during that first year on it, so, at the time, I wondered whether I had less fatigue because of the plaquenil or because of my new lifestyle's slower pace. Found out for sure this past year, when I stopped taking the plaquenil on a trial basis -- sure enough, after less than a week off the plaquenil, the fatigue rebounded big time, back to sleeping 12+ hours a day and still having difficulty keeping my eyes open in between naps. Took about a month back on it to get back to my "normal" energy levels, still not great, but lots better than off it. Didn't do much, if anything, for my pain levels though, unfortunately. I get my eyes checked every six months, no issues so far. Hope it works for you, with little or no side effects! Hugs, red
  2. red

    Embarrassing gastrointestinal issues

    Hi friends! I too suffer from this embarrassing and quite inconvenient problem. Both my rheumatologist and colon specialist have told me that my poor muscle tone in the rectum and anus are due to scleroderma, similar to the poor motility that affects my esophagus. While I've found some benefit from an over-the-counter fiber supplement that my GI doctor recommended, as well as biofeedback muscle training, I still have days where I just know it's not a good idea to leave the house! Yesterday I saw my GI for my annual visit - he mentioned a new treatment for fecal incontinence called Solesta. It's basically an inert, injectable material that bulks up the walls of the anus and narrows it to prevent waste from leaking out. He did say he's not sure yet if it would be helpful for me, but advised me to discuss it with my colon specialist to see if it's an option. Has anyone heard of it? My concern would be..and I will try not to be gross here! ...but what if the scleroderma makes our muscles so weak that we wouldn't be able to expel a movement through the narrowed passage? I don't want to be in a worse situation that I'm already in! amberjolie - I'm glad you're getting some relief with prednisone! I always feel better on it myself, but my doctors don't want me on it long term... Right there with you all, red
  3. Congratulations on your promotion Jo! Thanks for doing so much for all of us! Hugs, red
  4. Hi Cantuse, congratulations to you and your wife on the new baby! I'm sure he will fill your days (and nights!) with much joy! I can't advise you on on the SCL-70 as I've always tested negative on my antibody screens, but I have been taking Plaquenil for over a year now. Mildly upset my stomach for the first month or so, but that went away quickly. I do get my eyes checked every six months, and so far, no adverse effects there. Effect-wise, it's definitely not a "wow I feel great now" difference, but after around 6 months there seemed to be a gradual lessening of my fatigue, and now overall I have less days of drop-dead, in-bed fatigue than I used to have. My lung function tests have stabilized over the past year too, at around 75-80% -- before Plaquenil, I'd dropped from 100% down to less than 80% over the previous year, so I'm sure it's helped with the systemic inflammation. I'm disappointed that my joints and muscles don't feel better though.... I'm seeing my rheumatologist next week for my 3 month check up; he spoke last time of possibly adding a new med, leflunomide (Arava). It seems like it's a hit or miss with meds, while some meds might work well for some of us, others respond better with different meds, and unfortunately, a lot of the meds take quite a while to see an effect, so it's a lengthy process to get a medication regime in place that's working well. Hope you are lucky and Plaquenil works well and quickly for you! Keep in touch when your son is napping and you have a few minutes! red
  5. Peggy, so sorry you've had such a time these past months, hope this surgery will greatly relieve your symptoms. I had a fundoplication 3 years ago which stopped all my horrible burning-on-the-inside and aspiration attacks. Yes, recovery from the surgery was rough and a new and different way of eating was an adjustment, but well worth it as a trade for the reflux. Sounds like your doctor has researched your situation fully and that the gastric bypass will be your best chance for a great result. I'll keep you in mind next week too, wish you the best for a speedy recovery! :emoticons-group-hug: red
  6. red

    Hip shoulder and knee pain

    Hi Mando, sorry to hear of your painful flare up, I can empathize as well as I've suffered for years with first, the shoulder pain, starting in my early 40's, then the hips joined in at around your age. I think it's part of the connective tissue disease (reminds me of a song that has a line "I'm too young to feel this old"!) I can't take the normal NSAIDs either because of esophageal issues, but am on a Cox-2 inhibitor (a newer form of NSAID which has supposedly less GI side effects) - have taken it for a few years now without recurrence of my esophageal ulcers (but I did have a fundoplication which has certainly helped the reflux problem). I was also given a topical NSAID cream to use, but it didn't help me, maybe you would have more success with that. I had cortisone injections to both hips a few years ago, when I was diagnosed with bursitis of the hips - did help a bit. If you do get an injection, make sure you rest for at least 24 hours afterward - it will help the cortisone "stay in place" as my physical therapist put it -- giving you a better and longer benefit. Then I did around 6 weeks of physical therapy. Pain came back within a year, but I did have a reasonable short-term period of relief. Heat pads, whirlpool baths if you have access to one, may help you too. Also, I have a script for lidocaine patches, which help the pain in my wrists a lot. They help less so on my hips, but even partial relief is welcome! You mentioned you had surgery on your shoulder? May I ask what you had done and how you fared with it? My orthopaedic surgeon has recommended a total shoulder replacement for me, I'm still trying to decide if it's worth going through... Hope your doctors can help you out, Red
  7. I'm afraid I have to echo Craig's sentiments. The SSDI is not for the faint of heart; it's a long, frustrating process, almost impossible for an ill person to handle alone, and takes so long to be approved that most anyone without resources such as long term disability insurance, or a hefty savings account, would be bankrupt before they see any SSDI check! Before I applied, I researched SSDI thoroughly as to requirements, the documentation I would need, had the backing of 3 of my doctors (primary, rheumatologist and pulmonologist), had numerous testing results, xrays, multiple surgeries, evidence of 35% decline in lung function, joint deterioration in several joints, nerve conduction studies showing deficits in my hands even after carpal tunnel surgery, diastolic dysfunction as evidenced on ECHO (stiffening of the heart); months of physical therapy over the past 5 years, with only minimal improvement in range of motion of hands/wrists, hips, shoulders; vocal cord tightening as evidenced on laryngoscopic video; manometry evidence of "absent" motility of both esophagus and rectum/anus....I could go on and on... my lawyer said my medical file was by far the most voluminous and thorough documentation he had ever seen. I applied in August 2010, was promptly denied in October 2010. I appealed with a lawyer, and waited until December 2011, when I was granted a hearing before a judge. A few months before this hearing, I was examined by two of the Social Security doctors - a demeaning and humiliating experience to say the least - I was assumed to be a liar, and treated like one, from the moment I stepped into any SSDI office. Their doctors had not one scrap of my medical file nor history of illnesses (which by then had spanned more than 10 years), saying they were only there to assess my functional abilities. Both doctors had to help me up from the floor, after they requested that I squat ( my knees gave out and I couldn't get back up), yet both their reports stated their exams were essentially normal, except for only minimal restrction of motion in only my left shoulder! (If they had even bothered to look at one xray of my shoulder, they would have seen from it that I couldn't possibly have near normal range of motion - there is so much bone destruction, I have been advised by my orthopaedic surgeon I need a total joint replacement). At my hearing last month, even the judge readily admitted it was clear that I was not able to perform my nursing job of 17 years, but asked why I thought I couldn't do a desk job. I described the best I could about the debilitating and chronic fatigue and pain (that we are all too familiar with), how some days I can't even get out of bed...As we left the hearing, my lawyer told me the decision could go either way, that he'd seen a case when the judge had denied an applicant, saying he could always get a job as a department store greeter even in a wheelchair! Maybe the judge was in a good mood that day, or had some Holiday spirit, because I got my approval letter a month later, but it still irks me, as I'm sure you can tell! My advice? Get an experienced disability lawyer, and be as financially and emotionally prepared as you can be for a lengthy process. Make sure you've discussed your inability to continue to work with your doctors and make sure they document it in your record. And know through it all that you have a lot of support from us all! Good luck! red
  8. red

    Surgery Done

    Hi Susie, so glad to hear you've recovered from the surgery and the after effects so quickly! I'm another member of the gallbladder-less club, welcome! After I had mine out, I wondered why in the world I waited so long to have the surgery, soooo much better than those nasty GB attacks! Take it easy for the weekend, and hope you'll be as good as new very soon! Hugs, Red
  9. red

    Lung Nodules

    Sweet, so sorry you're going through all this! Do you have any family or close friends who are helping you cope? I've had high resolution CTs yearly since my diagnosis in 2008. First 2 were normal, then over 2009/2010 winter I developed shortness of breath and chest pain; I had H1N1 flu then pneumonia. The SOB continued after recovery, but I was told it was residual asthma and inflammation from the infections. My April 2010 CT was again normal. By Dec 2011, I had worsening lung symptoms and developed numerous lumps on my elbows and fingers, was told first they were calcinosis, then when I developed more, my rheumatologist took xrays - not calcinosis....."maybe rheumatoid nodules?" Ordered a biopsy of the lumps which showed inflammatory granulomas, highly suggestive of sarcoid (TB and other infectious diseases were ruled out by the biopsy.) More tests - blood had elevated ACE, calcium and calcitriol, urine had high calcium as well. PFTs dropped significantly with total lung capacity and DLCOs both in the seventies this year. By this time I was due for yearly CT scan and lo and behold - there were multiple lung lesions and enlarged mediastinal lymph nodes - the rheumatologist told me that normally if they see these they would suspect lymphoma, but because I had the skin lesions' biopsy already, he knew these lung findings were sarcoid lesions. Sarcoidosis is another autoimmune disease, which my rheumatologist tells me is not so uncommon to co-exist with scleroderma, and a lot of the symptoms are shared - fatigue, joint and muscle pain and weakness, lung and/or cardiac issues... It's certainly not a great diagnosis, but better than cancer. It;s unfortunate that you don't have a prior CT to compare with, there's no way of knowing how long you've had your nodules. I know from my research on sarcoidosis that it can cause liver lesions as well, don't know if it affects the pancreas. I'm an RN too, I hate it when I've read my reports and the doctors haven't told me everything they see! (My last CT shows new multiple osteophyte lesions on my spine - probably arthritis but could be sarcoid lesions as well, no way to know except to biopsy... but my doctors have never addressed this finding with me yet, grrrr!) We have a right to know, and most patients, even those without formal medical education, will research and educate themselves as to their disease, and will be informed enough to intelligently converse with their doctors. It's extremely paternalistic for doctors to withhold information because...why?...do they think we can't understand or can't emotionally deal with the findings? It's infuriating! I agree with you that I wouldn't be comfortable with ignoring the lesions and just assuming they are part of scleroderma. At minimum, you should see a pulmonologist and probably have a repeat CT in 4 months or so to see if there is a progression...and certainly a more aggressive approach would be to biopsy a lesion immediately. Have you had recent bloodwork to check on sed rate, liver function, etc? Know we're all with you in spirit, and will be here to support you! Let us know how your appointment with your primary goes. In the meantime, thinking of you and sending you hugs, red
  10. red

    Hurricane Irene

    We have weathered the storm here in Upstate New York, but the aftermath is devastating in some areas. Personally, I fared very well, our neighborhood is at a somewhat higher elevation - we got TONS of rain -- torrential, drenching rain for 24 hours straight -- but we did not get the damaging winds that were predicted, and did not lose power in my immediate area. Upstate, along the Hudson and Mohawk River Valleys and other low level lands are major flooding issues and power outages estimated at 100,000 homes and businesses (upwards of 1 million without power including NYC). Many roads and bridges closed. School hasn't started yet for students, but area schools have closed their offices and their sports cancelled because of flooding and/or power outages. How are others doing along the Coast? Hope you all are safe! red
  11. red

    Hurricane Irene

    Thanks for the well wishes, we may need them!! I'm in Upstate NY, it is around 3 pm Saturday as I write this - there is a very eerie silence outside, sun still shining but through hazy clouds, no wind. Very few birds at my feeders all day, and no sign of squirrels or chipmunks since yesterday - very unusual! The animals sure know something is coming. My dogs are getting restless too. Not worried about flooding in my area, but there is definitely potential for wide-spread power outages. Predicting sustained winds of 40 mph with gusts to 50-60 mph here. A little worried about not having air conditioning, but hopefully the storm will bring cooler air with it. I have a battery-operated nebulizer for my inhaled meds in case the power goes out. We've moved in all the lawn chairs, potted plants, etc. Husband has our chain saw gassed and oiled and ready for use if we or the neighbors need it.... Flashlights, batteries and candles handy....I think we're ready... I do worry about you folks nearer to the Ocean, you will be getting much worse than me!! Stay safe! :emoticons-group-hug: red
  12. red

    Gareth update

    Hi, hope Gareth is recovering nicely and that the surgery takes care of his pain. I had gallbladder-like attacks for years, but ultrasounds were always normal. Finally had a HIDA scan which showed dysmotility of the gallbladder, had the cholecystectomy, and never had another attack, thank goodness! Surgeon said my gallbladder was large and filled with sludge. Wasn't diagnosed with sclero til years later, but my rheumatologist thinks the gallbladder dysmotility was an early symptom of the scleroderma. I'm in upstate NY, I personally didn't feel the earthquake, but my husband's workplace sure felt the shaking, they evacuated the building but after inspection, everything seemed okay, without damage to the building or equipment. Hope you didn't bring the earthquakes with you from California! :emoticons-group-hug: to you and Gareth! red
  13. Saw rheumatologist yesterday for 2 month follow up since starting on new medicine for the sarcoidosis (skin lumps and enlarged nodes/lesions in lungs) I developed this past year. There's no improvement yet, although he did warn me that it may take 6 months or more for the med to start working. In fact, I was complaining that my upper chest feels worse, and it's difficult to take a deep breath. After listening to my lungs and heart, he examined and pinched the skin over my upper chest, and informed me that I have some tightening here, along with some tightening on my face and across my palms/wrists (where I think I've had for awhile, but before yesterday, he's said that these areas were normal). My one shoulder is getting worse too, quite limited in range of motion and very crunchy-sounding, which he thinks might be a rotator cuff tear, so I need to go back to the ortho doctor to evaluate for possible surgery. My rheumatologist says he has another med "in his back pocket" for me to try if this new medicine isn't turning the lungs around by October. But my pulmonologist says if there is no lung improvement by August, no more waiting, I will go on prednisone.. and my primary agrees. I don't want to get caught in the crossfire!! I trust my rheumatologist, but I'm all for a short month or two on prednisone to get some improvement while we find another long-term medicine that works. Anyway, I won't be in chat room tomorrow . I will be having my esophageal endoscopy and colonoscopy, so y'all know where I'll be spending the evening! :blink: Wish me luck, really don't want any more bad news. Thanks for your support, it's great to have you all here for a pity party every now and then! For all my USA folks - stay cool and safe! It's quite a heat wave, isn't it? At least the endoscopy room will be well air-conditioned for me! Red
  14. Hi Susieq, It's nice to hear from you, hope things are going okay for you. Thank you for the hugs! I was diagnosed in 2008 with sine, after about 10 years of joint pain, fatigue, carpal tunnel symptoms, and GI dysmotilitys and reflux. I had a fundoplication the same year, and have had bilateral release surgeries for carpal tunnel over the past couple of years. It had been progressing very slowly and chronically for years, it seemed. Things went sour Nov 2009, when I came down with H1N1 flu, then pneumonia and was on antibiotics and prednisone for 4 months. My lungs never did feel right after that. Fatigue and joint pain flared terribly when the prednisone was tapered off, and hasn't left yet. Voice hoarseness increased. I developed lumps on my elbows/upper arms, knees, fingers over this past winter, and was diagnosed with another autoimmune disease, sarcoidosis, after biopsies, CT scan and PFTs showed lung involvement. Raynaud's has been much worse this year too - had multiple toe ulcers over the winter, however thankfully resolved pretty quickly with amlodipine. Am hoping my new medicine, hydrochloroquine, will slow things down... But enough about me, I remember from previous posts your lungs are much worse than mine. Are you seeing any improvements with your current meds? :emoticons-group-hug: to you all! Red
  15. Thanks for all your support, I really appreciate it! hot :emoticons-group-hug: for your all! I do enjoy a good pity party now and then, but like to keep them short and sweet, am ready to face things and see where my journey goes from here. Yesterday went ok, nurses were a bit concerned when my O2 sat was only 95% just sitting, but it came up promptly to 99% on oxygen. And yes, fortunately, doc did the upper scope first, lol -- or at least he said he would, don't remember any of it :emoticons-yes: for conscious sedation! Doc said he biopsied the "irregular Z line" and a polyp he found in the stomach - I had both these findings on my first endo a couple years ago, and the biopsies were ok then, so I'm not too worried there. No sign of esophageal erosions this time tho, the fundoplication is still intact and the colonoscopy only showed wide-mouthed diverticula, which also were there last time, but no polyps this time, so all-in-all, GI tract is looking ok. Amanda and mioceon, thanks for the welcome to Diffuseland, I have great new neighbors! It's wonderful to be part of such a caring online family, thanks again. And my local family here, also took good care of me, they even did the dishes for me yesterday!! Wonder if I can get them to do that everyday... PS We had some good thunderstorms this morning here (New York State), so things have cooled just a bit, down from upper 90's of the past 2 days, expected high of "only" 94 today. :o Thank goodness for air conditioners! Stay safe! Red
  16. red

    Off Doctors

    Miocean, this is truly wonderful news! :emoticon-congratulations: Enjoy your doctor-free vacation. I can't think of anyone who deserves it more! :emoticons-line-dance:
  17. red

    Disability News

    Congratulations Craig! What a long battle it's been for you, I'm so glad it's finally over and approved. :emoticons-yes: I'm still waiting for my appeal hearing date... red
  18. red

    Right upper abdominal pain

    Hi Margaret, sorry to hear Gareth is not feeling well. Years ago, I had lots of intermittent spells of upper right abdominal pain, very painful - doctors suspected gallbladder but my ultrasounds were always negative. Finally had a gallbladder emptying scan - I think it was called a HIDA scan - which showed my gallbladder was not emptying properly. The surgeon who removed my gallbladder said it was full of "sludge" from chronically not emptying - I didn't have any more attacks after the surgery. I wasn't diagnosed with sclero for years after the gallbladder problems, but my rheumatologist thinks it was from the scleroderma - similar to the esophageal and rectal dysmotility I have, sclero probably caused the dysmotility of my gallbladder as well. As I remember, the HIDA scan wasn't too bad - they gave me an IV to inject a radioactive marker, then the worst part was I had to lay flat for quite a while as the scan monitored how my gallbladder filled and emptied the marker. Hope your doctors can figure out what it is soon so Gareth can get better quickly! red
  19. My daughter, who gave birth today to an adorable baby boy, has promoted me to the rank of grandmother! :woohoo: An incredibly moving event for me, and a much needed emotional pick-me-up - as some of you know, I've been in a bit of a decline healthwise lately. After a very long labor (nearly 48 hours from first few contractions to delivery, including over 3 hours of pushing!!), Grady was born at 7:15 this morning, my first grandchild, weighing in at a hefty 8 lb 14 oz - bear in mind my daughter is very petite, under 5 ft tall! Needless to say, new mom and dad are exhausted, but beaming with joy. :emoticons-line-dance: :emoticons-line-dance: It's been a great day! I plan on being around for a long time to watch this one grow up, hopefully to be joined by a few more!! Daughter says NOT EVER AGAIN, but don't most new moms say that after their first? Thanks for listening! Hope your day was even half as good as mine was :VeryHappy: Red
  20. red

    Ulcer and Calcinosis

    Hi Annie, sorry you're suffering so, I'll hope too, that the antibiotics will do the job and you won't have to decide which route to go surgically. I do understand your dilemma, it's very difficult that some insurance company plans are arbitrary as to what and how much they cover. I agree with Shelley, a call to your insurance carrier, to get an exact $ amount as to your cost, is in order. Then you can make a more informed decision. Although if I were in your shoes, I'd opt for the less pain method, even if that meant I needed to give up some things and be extra frugal for awhile to pay for it. It was great chatting with you last week, am looking forward to this Friday so we can connect again! :emoticons-group-hug: Red
  21. red

    Esophageal and stomach polyps

    Sorry - I meant Angie, not Marie....where in the world did I get Marie from :emoticon-dont-know: ? My mind must be going, along with the body these days.... :blink:
  22. red

    Esophageal and stomach polyps

    Hi Marie, I'll be thinking of you over this next week while you wait for your biopsy results, the wait is so difficult, isn't it? I had my first esophageal endoscopy 3 years ago, at age 48, they found 2 polyps in my stomach, esophageal erosions and an irregular Z line, which they biopsied also, thankfully all these came out benign. (I don't have GAVE though) My GI scheduled me for a colonoscopy, because he said that when there are polyps in the stomach, there will be some in the colon too, and sure enough, he found more, also benign, but I have to have upper endo and colonoscopies every 3 years now for rechecks, so I'm due again very soon. I still have esophageal spasms and trouble swallowing, so I'm not sure that there is a cause-and-effect relationship between these and polyps or that the finding is just coincidental. Like Jeannie, tipping my head forward and drinking warm drinks do help with swallowing for me. Hang in there, hope your GI doctor can offer you some relief soon, Red
  23. red

    Minus 25 lbs :)

    Congratulations, you are an inspiration to us all!! :emoticon-congratulations: I'll join in the happy dance too :emoticons-line-dance: :emoticons-line-dance: Keep up the great work! Red
  24. red


    I had both of these - upper endoscopy first, which found polyps in my stomach and then needed to have a colonoscopy (polyps there too), they told me in the future I can have both exams done the same day, saving me the extra IV, sedation, etc. I told the doctor before the upper endoscopy I was very anxious about choking and didn't want to be awake at all for it, he said "no problem" and I was out like a light and don't remember a bit of it :emoticons-yes: altho I did have quite a bit of nausea and vomiting afterwards. Not sure if that was because of the sedation or the exam of the stomach itself, but told the doctor about this before the colonoscopy, and he gave me a bit less sedation that time, so I do remember some of this exam, including watching the monitor and hearing them say "there's another polyp" and seeing them cut it, but felt strangely detached and none of it bothered me neither physically nor psychologically. I agree with the others in that the worst parts are the IV and the day-before preparation for the colonoscopy (caution: my father-in-law once took a nap during his "prep" - what a mistake - he had to throw out his sofa due to the mess :blink: lesson learned: stay awake and very near the bathroom!!!) Good luck to you! Red
  25. 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!! :emoticons-group-hug: 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!! Pity party officially over now :blush: