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Everything posted by Margaret

  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. Margaret

    Happy Valentine's Day!

    :balloons: Happy Valentines Day to everyone. Thanks for being here to help!!! :balloons: Take care, Everyone. Margaret
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. My thoughts are also with Birdman's wife and family. I forgot.....is she also struggling with Scleroderma? Margaret
  15. 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
  16. 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
  17. 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
  18. 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
  19. 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
  20. 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
  21. 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
  22. Margaret

    IVIg Infusions

    Hi Everyone, We got the official word today that Gareth is a prime candidate for the IVIg infusions. His MBL deficiency, his inability to produce a response to the pneumo vaccine, and his IVIg 2 and 4 deficiencies. Both doctors recommend the weekly abdominal infusions, at home, with a nurse present. Needless to say, my jaw dropped when he told me the price per year! They will deal with the paperwork and contacting the insurance companies, thank goodness. My mind is confused. I'm scared that he 'sick enough' to justify them and cautiously hopeful that he will indeed be healthier. He's had a horrible year with two sinus surgeries in April and May, his gallbladder out in August, and mastoid surgery of his left ear last month. All were due to persistent, unresolved infections. I will keep my cyber family posted on when they start. I so much appreciate your input! Take care, Everyone. Margaret
  23. Margaret

    Low blood pressure

    Hi Everyone, I have a few questions about low blood pressure and UCTD/Raynauld's/Sjorgens's being the culprit. Gareth's had the diagnosis of Orthostatic hypotension since he was 15 years old and the doctors said he'd outgrow it. Well, two weeks ago he was hospitilized because of what appeared to be a major seizure. The cardiologist at the hospital found out his BP was the reason......110/70 laying down, and then, dropping to 70/48 when standing up. His pulse also makes a jump from laying to standing. He's been on a med now to raise and stabilize the BP for 2 weeks and no change. Since these illnesses cause changes in the blood vessels, is the medication really going to help or is this something that we will need to watch constantly? Has anyone had the diagnosis of Dysautonomia added to their records because of changes in veins/arteries do to Sclero/UCTD, etc? He had been falling a lot but we attributed it to an inner ear infection and his mastoid bone surgery in Oct. That is healed but the dizziness continues. I have read where others have low BP.....is it a constant feeling all day? Perhaps, that explains why he prefers to sit all day and do nothing!!! Thanks for all you help. Take care, Everyone. Margaret Mom to Gareth, 23 years old, DS/ASD
  24. Margaret

    Low blood pressure

    Hi Everyone, First, on this beautiful, sunny Thanksgiving Day, thank you all for the kind words and support. It's much appreciated and needed. I hope all are spending a relaxing day with family and friends. Shelley....the Cardiologist wants to do that Tilt table test on Gareth. He's scheduled to see him in Jan to decide. Gareth also doesn't sweat properly and his body temp can be anywhere from 96 to 99 at any given time during the day. It's definitely an autoimmune issue with him, I have many friends with children who have Down Syndrome and Autism, and Gareth is definitely a *one of a kind* !!! Miocean.....I will have to remember to tell Gareth to put his head back when he feels dizzy. The nurse and doctors did tell me to get him to kneel on the floor, though. Take care, Everyone, and don't eat too much!!! Margaret
  25. Margaret

    Low blood pressure

    <<I have had orthostatic intolerance (which is a subcategory of dysautonomia) for many years>> Hi, Shelley , What's the difference between O intolerance and O hypotension? Dysautonomia is a new one for me and it's been brought up as a possibility for the increase in his BP incidences. I guess the other concern is that his pulse rises 20+ beats when his blood pressure drops. On good days, he's on the floor because *legs weak* or *dizzy, Mom*. On bad days, he tells me *night, all black*....meaning he passed out completely with no warning. On Tuesday, we go see the Immunologist to decide on these IVIg treatments. I'll keep you all posted on that outcome. Thanks so much for all your help....it's so much appreciated. Margaret