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Everything posted by Margaret

  1. Margaret

    Daughter with New Diagnosis

    Hi Madisonsmom , I learned about Scleroderma when my son was 18 years old and just starting his senior year. He complained that his food was getting stuck, which led the Gastro doctor to order a swallowing test. Turns out his esophagus wasn't working after the first 2" or so. He ordered a mess of blood work and it came back + for scleroderma (ANA + speckled pattern, anti-RNA Polymerase 1/111) He also had the chest tightening (Chostrocondritis?), a 20 # wt loss, over whelming fatigue, autoimmune induced depression, but no skin issues/Raynaud's --- so they went with UCTD and not sine scleroderma. After 6 months, they started him on Plaquenil and he stabalized for a while. He has since developed Raynaud's, hypothyroidism, and SICCA (dry eyes/mouth) but no skin issues. His Endocrinologist is currently working him up for Adrenal insufficiency...possibly secondary to the UCTD. He's 24 years old now and there have been many ups and downs.....just go with your gut feeling and push for answers when something seems "not right", His biggest issue has always been the fatigue....."so tired, Mom". Take care, Everyone. Margaret Mom to Gareth, 24 years old, DS/ASD/OCD
  2. Oh, my....what a sad day. My thoughts and sympathy are with her family. I'm sure she's in a beautiful place where there's no pain. Margaret & Gareth
  3. Margaret

    Visit With Scleroderma Specialist

    <<Hey, i won the "Most Ologists" Award! :emoticons-clap:>> Hi Miocean , I am so happy to read that you're doing so well....been following your journey for years!!! :emoticons-clap: I had to chuckle at the *Most Ologist* award.....just like Gareth with his Pulmonologist, Gastrologist, Rheumatologist, Immunologist, Endocrinolgist, Cardiologist!!! Appts are every 3-6 months each....all totally in awe as to what *this kid* could possibly come down with next!!! :emoticon-dont-know: Do take care, Everyone. Margaret
  4. Hi , I find this a very interesting article since Gareth has such a bad reaction to Prednisone. The psychosis and night terrors are so scary. People also need to know that some of these new, stronger antibiotics, like the fluoroquinolones (Levaquin), can also cause psychosis. Take care, Everyone. Margaret
  5. Margaret

    Out of the Sclero Closet

    Hi Everyone, Just this past Saturday afternoon, someone asked me what was wrong with Gareth? He was participating in a Special Olypmics Tennis clinic and kept kneeling down on one knee with his hands/chin on the racket handle to support himself. You could tell he was tired but he insisted on staying. At first, I told the lady he had autoimmune *issues* and got tired easily. When she pressed on as to *what is that*, I tried to explain Scleroderma, too. It's amazing that many people don't even know that Rheumatoid Arthritis is an autoimmune disease and how they can all zap your strenght/energy. I guess if we all tell one person, at a time, people will soon learn more about autoimmune diseases. Take care, Everyone. Margaret
  6. Hi Everyone, Does anyone take a pill for their Sjogrens' dry eyes and mouth? Gareth won't allow me to use drops in his eyes :glare: and the rheumatologist recommended Salagen (pilocarpine) tablets twice a day. I'm skeptical about adding another pill to his daily number - he's up to 6 now, plus a multivitamin, flaxseed, and acidophillus. Do dry eyes hurt? :emoticon-dont-know: He's always twitching/blinking, but he has Tourette type tics, too. Would it help to give it to him at night...do dry eyes bother you when sleeping? She said it would make him drool.....not something he'd be bothered by but others would!!! (Emoticon for Gross!!!) Thanks for all your help. Take care, Everyone. Margaret
  7. Margaret

    It's been two years today

    Hi Miocean , I love happy news :emoticons-yes: Thanks for sharing with us your journey and feelings. :happy-day: Amanda & JudyT.....I sure hope you two start feeling better. :sick2: And....to really put the damper on Miocean's good news, Gareth is on his second round of antibiotics for a sinus/ear infection that progressed into left lung pneumonia. So much for 8 weeks of Iv G infusions making him healthier!!! I guess the good news is that he did not end up in the hospital like the last two times of pneumonia. I think we all need a group hug!!! :emoticons-group-hug: Take care, Everyone. Margaret
  8. Margaret

    Today Was A Life Lesson

    Miocean, JudyT, and to all my other Scleroderma cyber friends , I don't know how you all do what you do....many days just putting one foot in front of the other. Some days only taking one step and other days 10 steps. The uncertainty of each day must be so frustrating emotionally. I may not respond to all posts but I do read most of them and I do keep you all in my daily thoughts. Take care, Everyone. Margaret
  9. Margaret

    Medication for Sjogren's

    Hi Everyone, Thanks for all the responses and feedback. I did try the Salagen for about 2 weeks and noticed a definite change in behavior.....very reclusive/shut down/in bed a lot. :sick2: I was giving him one pill a day, 5 mg, in the morning, figuring it would help his eyes during the day. Unfortunately, he would never tell me what was *wrong* but he was spending too much time in bed and that was the only new medication. He sees the eye doctor next month and I will ask about other options. It may have to be that they get so irritable that he will want the eye drops. That is the one *quirk* of autism that really bothers me.....the inability to relate pain and discomfort. :angry: Take care, Everyone, and once again, a BIG :thank-you-2: for all of your help and insight. Margaret
  10. Margaret

    Happy Valentine's Day!

    :balloons: Happy Valentines Day to everyone. Thanks for being here to help!!! :balloons: Take care, Everyone. Margaret
  11. Hi Craig , I first learned about autoimmune induced depression 4 months after Gareth was diagnosed. These days, it's still hard to pinpoint if he is *shutting down* due to depression, pain, fatigue, or all of them together. :( My heart goes out to all of you struggling with this combination. Take care, Everyone. Margaret
  12. Margaret

    Medication for Sjogren's

    Hi Jo , When the eye doctor did the Schirmer's test last year, and Gareth did so poorly (I think he had a 2 and 3 out of 6)he said the treatment was Plaquenil. I told him Gareth had been on it for almost 5 years.....so why the SS now? He didn't know. The Rheumatologist says the same....not sure why the SS symptoms are progressing. He goes in for his yearly exam with the eye doctor (because he's on Plaquenil), at the end of this month. Thanks for all the help! Take care, Everyone. Margaret
  13. Margaret

    IVIg Infusions

    Hi Everyone, If I'm not mistaken, there are one or two individuals on this site doing the IV Ig infusions. Gareth has been to the third Immunologist (supposedly the best in the area) and he said he's a prime candidate for the infusion because of his MBL deficiency and the IgG 2/4 deficiencies. Of course, I've been reading online for a week now and not really liking what I read about it. I don't have to make a final decision till the end of November when he goes back to this doctor. I'm not finding any real *pros* for it and read that it takes 3-5,000 blood donors to get a single dose. It seems very controversial..... 'Course we all know how reliable the web is!!! Anyways, would whoever knows about it personally contact me privately or through this site? Has your health really improved? Did you suffer the intense headaches/migraines? I'm wondering if the better route would be just taking antibiotics whenever you need them? Thanks everyone, Margaret
  14. Margaret

    IVIg Infusions

    Hi Everyone, I did it....I stuck my kid!!! Gareth never even flinched -- he just looked at me like I was nuts!!! :rolleyes: Like last week, it took 1 1/2 hrs and he did just fine. The nurse will come next week, and then, we're on our own. He saw the Immunologist today, too, and he said it will take almost 6 weeks for the body to build up immunity. He will have blood work done at that time to see if his levels of IgG have risen. I'll keep you all posted. :thank-you-2: Margaret
  15. Margaret

    Plaquenil pros and cons

    Hi Vanessa , My son was put on Plaquenil 9 months after being diagnosised with sine scleroderma. At the time, he had esophageal dysmotility (2/3rds of his esophagus), positive ANA, + Anti-RNA Polymerase 1/111, severe fatigue, and tightening of the chest cavity (chondro?). Anyway, it took them quite a bit of time to decide to try Plaquenil because he didn't 'fit' the scleroderma pattern. He was only 18 years old and male. It was 3 months later that he told me his 'food tube' was working again. He's been on it for 5 1/2 years now with no significant side affects or flares since. His biggest issue, like many of you, is the overwhelming fatigue/tiredness. I did ask his rheumatologist about taking him off it and she said 'NO'. His diagnosis now is considered UCTD. Take care, Everyone. Margaret
  16. Margaret

    IVIg Infusions

    Hi Everyone, Well, today Dad and Mom learned how to do subQ Ig infusions. :emoticons-clap: The nurse walked us through the prepping and put in the first needle. Dad did the second one with no problem. Me.......well......I just looked at that needle (1/2" long) and said "I can't do this." :unsure: They are very fine needles, go straight in all the way, and Gareth said they didn't hurt going in......but.....I just couldn't stick him. Not today, anyways.....maybe next week !!! It took about 1 1/2 hrs for the 50 cc's of fluid to go in the 3 needles and there was no major drop in BP this time. As of this evening, he's had no headache or other side affects. Janey......the nurse told me today that many insurance companies won't pay for weekly infusions because they are *more expensive*. I find that hard to believe since the individual is expected to do them on their own (after a 4 wk learning session) and in their home environment. I suppose the monthly IV's are done in a clinic or hospital setting with a nurse....right? :emoticon-dont-know: Also......Gareth saw his old Rheumatologist, from 2 years ago, on Thurs. He made a fine entrance.....when they called him to go back to the examining room, he stood up, walked two feet, and promptly crashed down. :excl: His BP dropped too fast and they came rushing with the wheelchair. doctor said he does not have Raynauld's if it is his hands and feet turning completely white, then red. That is from the vaso vaso constriction and OH. So.....I get to take that off his list of medical issues. :VeryHappy: She said R's is red, white, and blue....you need all three colors in the fingers and/or toes. You guys are great....thanks for being here!!! Take care, Everyone. Margaret
  17. Margaret

    IVIg Infusions

    Hi Everyone, Well, Gareth had the first infusion yesterday and no severe side affects or headache. It took about 2 1/2 hrs and the only *issue* that came up was his blood pressure dropping occassionally to @ 78/48. The nurse would *back off* a bit on the fluid speed and everything would return to normal. I guess this happened 2 times. On Monday, he will start the subQ infusions with 3 needles and a pump. She assurred me that this is something Gareth & I can learn to do weekly. My understanding is that it is like an insulin pump? I will keep you posted. Take care, Everyone. Margaret
  18. My thoughts are also with Birdman's wife and family. I forgot.....is she also struggling with Scleroderma? Margaret
  19. Margaret

    Yearly Test Updates

    Hi Miocean , I was so happy reading your post that I had to X out of AOL and go to Mozilla just so I can put up smiley faces and dance!!! For some reason, AOL doesn't allow them to come through. Congratulations, Lady!!! :emoticons-yes: You have been such an inspiration to me over the past years. :happy-day: :happy-dance: :emoticon-hug: :happy-dance: :happy-day: Take care, Everyone. Margaret
  20. Margaret

    Splitting up

    Hi Lynn , I, too, will keep you in my thoughts. Right now, you don't need the stress. Take good care of yourself and join us when you're settled in. Margaret
  21. Margaret

    IVIg Infusions

    Hey Ladies , I want you to know that you all brought a BIG smile to Gareth's face today when I showed him the smiley faces and dancing beavers!!! Thanks for the support and kind words.....I wouldn't know what I'd do without all your support. Take care, Everyone. Margaret
  22. Margaret

    IVIg Infusions

    Hi Everyone, Gareth will be starting the IvG infusions on January 16. I was so surprised when they called the week before holiday and said they would be out December 19th......less than two weeks after the doctor ordered them!!! I expected some long, drawn out fight with the insurance companies!!! We had to wait, though, since we went on vacation the week of December 25 for the whole week. The first dosage, GammaGuard is through an IV, for 2-3 hours. The following weeks, it's sub Q, with Hizentra, and should take 60 minutes. A nurse will come to the house and deal with it.....thankfully. I will keep all of you posted on how it works out. He's been having so many abdominal issues, lately, and has an upper barium scheduled for January 18. All he can tell me is that his belly hurts....not as bad as the gallbladder pain of last summer, though. Take care and best wishes to everyone this coming year of 2012. Margaret Mom to Gareth, 23 years old, DS/ASD
  23. Margaret

    Rapid skin thickening

    Miocean , I think the renal marker is the Anti-RNA Polymerase 1/111 blood test. Gareth is positive for that and his numbers keep getting higher although no one seems to have any knowledge of what that means. Having this positive blood work is specific to Scleroderma and puts one at a higher risk of renal failure. Take care, Everyone. Margaret
  24. Margaret

    Pulmonary Rehabilitation Dropout

    Hi Miocean , When I read this two weeks ago, I wanted to respond on two things....the statins and 12 minutes on the treadmill. My Mom only lasted two weeks on statins before she found her legs were too weak to walk much. That was her only new med so she was quick to make the connection. Second, Gareth doesn't have lung, kidney or heart issues and there is no way I could get 12 minutes out of him on the treadmill!!! I have always assumed it's the *fatigue* due to UCTD because he used to play sports so well. I'm glad to hear you're doing so well.....you're all an inspiration to me!!! Take care, Everyone. Margaret
  25. Margaret

    IVIg Infusions

    Hi Shelley , I was correct....I think!!! The 2 choices, as I understood them, was once a month via an IV line - taking 5-6 hrs OR once a week, through the abdomin, taking about 1 hour at a time. The weekly infusions are more steady in dosage as opposed to the once a month infusion where the levels peak very high, and then, dwindle down all month. I really don't know though.....I'm new to this, but I do believe we are talking about the same thing - IV Ig infusions. The doctor also said the weekly dosages cause less severe side affects.....if they are severe, then Gareth won't comply and go through with them. Take care, Everyone. Margaret