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Everything posted by Margaret

  1. Hair loss, help!

    Hi Patty , I have been hesitant to reply to this because I don't have Scleroderma or any autoimmune issues. I did experience my own fine, thin hair falling out (in gobs) several years ago, though, and was told it was due to stress. Someone recommended OTC Gelatin capsules and my primary care physician recommended OTC Biotin. By using both of them, my hair has returned and is healthy again. You could try that combo and see if it works. I have noticed that since Gareth started Synthroid for his hypothyroidism, that his thick hair is thinning quite a bit. I'm not sure if I will start him on supplements, though. Take care, Everyone. Margaret
  2. Four years!

    Hi Jeannie , Your post brought a big smile today. I was just thinking last week, that it will be 4 years, this month, since they found Gareth's esophageal dismotility and he's doing quite well these days!!! All the horrors I read about never came to fruition.....thanks to the Plaquenil. I hope you can go out and enjoy a delightful dinner/evening. And, since Gareth won't eat chocolate, I will be more than happy to take his box!!! :happy-day: Take care, Everyone. Margaret
  3. Just SO many questions!

    Hi LC , Welcome to the forums. I am Mom to a son who was diagnosed at age 18 (now 22 years old) with sine Scleroderma, and later, switched to UCTD. Unlike your son, my kid had all internal involvement and no skin issues. His started with the esophageal dismotility, restrictive lung issues, loss of vocal cords, 20 lb. weight loss, and positive blood work, etc. It wasn't until last winter that he showed signs of Raynaud's and SICCA (dry eyes and dry mouth). He was started on Plaquenil nine months after the initial diagnosis and, within 3 months, his esophagus was working, voice was back, breathing was normal, and he was doing okay. My son also got something called autoimmune induced depression, so please, watch out for that. The same autoimmune problems attacking the body can also affect the brain chemicals. This is a fantastic group of people who held my hand and walked with me through the first year of his diagnosis. If you even have any questions, they are the ones to ask. Take care, Everyone. Margaret
  4. Undifferentiated Sclero?

    Hi Mickikid , My son was diagnosed 4 years ago with sine Scleroderma (by the gastro doctor and primary care physician) and it was later changed to UCTD (by the rheumatologist) because he had no skin issues - all internal involvement. He was started on Plaquenil and within 3 months his symptoms subsided. He's been on a pretty level road since then. No matter what it's called, get treated for the symptoms.....not the name. Take care, Everyone. Margaret
  5. Celebrating for Different Reasons

    Hi Miocean , I'm chiming in a bit late but want to say *congratulations* also. I like happy news and yours is definitely *up there* when it comes to good news!!! Take care, Everyone. :happy-day: Margaret
  6. UCTD Diagnosis

    Hi Chimama , Four years ago, my son, at age 18, started with an unexplained 20# wt loss, esophageal dismotility, loss of voice, major fatigue, restrictive lung issues, esophageal spasms, + ANA, speckled pattern, and + Anti-RNA Polymerase 1/111. He had no skin issues, Raynaud's, or nailfold capillary irregularities at that time. His gastro doctor and ped concluded it was sine Scleroderma. After going to a rheumatologist, though, they called it UCTD because he didn't have any skin issues or Raynaud's. They did start him on Plaquenil 9 months later and his internal issues got better. Last winter, though, he started showing signs of Raynaud's and dry mouth/eyes. He's still UCTD but his new rheumatologist says they treat the symptoms....not the name. His major problem these days is the chronic fatigue. Take care, Everyone. Margaret
  7. Banners across the top

    Hi , I, too, like the smiles every morning from the banners!!! Thanks, Shelley!!! Take care, Everyone. Margaret
  8. Diagnosed today,with a question mark

    Hi Grammycats , Welcome to the group. My son started out with esophageal dysmotility as his major issue, too. He's doing okay now that he was put on Plaquenil. Hopefully, the other doctor (a rheumatologist?) will help you. As for your name, Grammycats, do you have lots of cats? I'm the crazy cat lady in our family; we have 6 inside cats and 1 feral cat, outside, that I feed every night. Take care, Everyone. Margaret
  9. Depression: The Precursor of Disease

    HI Janey , Depression is one of the biggest *issues* that we have been dealing with, in Gareth, since his diagnosis. We were just told to increase his Vit D level, again, and buy Full Spectrum lights for throughout the house. Take care, Everyone. Margaret
  10. Scleroderma often left undiagnosed

    Hi Everyone, I can't begin to imagine Gareth going 6.7 years before being diagnosed and put on Plaquenil. Thankfully, he was put on it within 9 months. To picture him having many years of esophageal dysmotility, chronic weight loss, no voice, restrictive lung issues/pain, esophageal spasms, fatigue............. blast, I'd go nuts for him!!! Take care, Everyone. Margaret
  11. Seizures and Scleroderma

    Hi Amy , Welcome to the group. I wanted to respond to the seizure question and tell you what happened to my son. He was diagnosed with sine Scleroderma, then switched to UCTD, almost 4 years ago, at the age of 18. One year later, they said he had a seizure (supposedly backed up by a single EEG) and was put on seizure meds. For 18 months, he went through many meds, all causing wicked side affects. He finally went into the hospital and had a week long EEG study done. It found that he was having non-electrical, 'non-epileptic' seizures, also called pseudo seizures. They are not FAKE seizures....as one resident suggested. They don't know what causes them, but they do appear like real absence/partial/even grand mal seizures. Before you submit to any seizure meds, please have the week long study done in an Epilepsy center. Meds do nothing for pseudo seizures. doctors don't know what brings them on or why they happen. Take care, Everyone. Margaret
  12. Hi Erika , Is he saying that you have celiac disease.....allergy to wheat and gluten products? If so, then, yes, untreated CD can cause havoc on the intestinal/immune system. Also.....he saw fungus on your blood cells?!?!? Wouldn't that make you very sick, systemic wise? I hope the treatment works. Take care, Everyone. Margaret
  13. 6 months today!

    Hi Miocean , I, too, am amazed it has been six months already. WOW!!! Glad everything is going well for you. :emoticons-yes: Take care, Everyone. Margaret
  14. New rheumatologist

    <<He insisted that without serological confirmation that no diagnosis of scleroderma can be made.>> Hi Debo , For what it's worth, initially, Gareth HAD the positive blood work along with the esophageal dysmotility, restrictive lung issues, chostochondritis (inflammation), loss of vocal cords, 20 pound weight loss, extreme fatigue, BUT no skin issues. Even though he didn't get the sine scleroderma diagnosis, but the UCTD diagnosis, they started him on Plaquenil. It really doesn't matter as long as they treat your symptoms. Even now, the rheumatologist has added Raynaud's and SICCA to his diagnosis, but still considers it UCTD....not sine scleroderma. Take care, Everyone. Margaret
  15. Maybe a dumb question on Raynaud's

    Hi Everyone, I am at a loss to understand why Gareth only gets white hands/fingers when he gets into the warm shower. He likes the water on the warm/hot side so I know it's not because he's cold. You would think he'd turn white getting out of the shower, but he turns white while in the shower!!! Take care, Everyone. Margaret
  16. Hi Everyone, I didn't know this and was interested in the report. Gareth's been on PPI's since he was 10 years old, due to reflux caused by low muscle tone from the Downs Syndrome (DS). It's interesting, like you, Janey, that he takes generic Prevacid twice a day. I will run this by his doctor the next time I have Gareth in. Perhaps he needs a bone density test just to be sure he's not getting brittle bones. Take care, Everyone. Margaret
  17. Congratulations, Jeannie. I sure appreciate all that everyone does to make the site so useful, friendly, knowledgeable, supportive, etc. Thank you, Margaret
  18. Staying healthy in summer heat

    Hi Janey , We just got back from vacation that involved some hiking and, boy, did we see a change in Gareth due to his meds. After hiking 1/2 mile or so up a gorge, he was sweating bullets down his face and through his shirt. We turned around and headed back to the car, but he continued for quite some time after. We had water with us and it was only the low 70's, shaded, and by water. I assume it was from the Synthroid or the Plaquenil, but we learned that we really have to watch him closely. The frustrating part was the fact that HE did not want to turn around and wanted to keep hiking!!! Take care, Everyone. Margaret
  19. Hi Janey , Thanks for the article. Gareth has the + Anti-RNA Polymerase and it has risen slowly from 23 to 83 on his last draw (his 3rd testing for it). I wish there was a site that told of the significance of the numbers but I have yet to find it. I will bring this up to his new Rheumatologist when Gareth sees him for the first time. Take care, Everyone. Margaret
  20. 4 months now

    Hi Miocean , So glad to hear the good news. Thanks for keeping us posted....I don't mind the updates at all. :happy-day: Take care, Everyone. Margaret
  21. Hi Jason , My son was initially diagnosed with sine Scleroderma at age 18 because of esophageal dysmotility, restrictive lung issues due to his chest cavity tightening, hardening of vocal cords, + ANA, + Anti RNA Polymerase 1/111, and Autoimmune induced depression. That was changed to UCTD after being on Plaquenil for several months and his symptoms subsided. He's never had skin issues. He's 22 years old now and developed the Raynaud's and SICCA this past winter. Other than the constant 'I'm tired' feeling, he's doing okay. Glad you're coaching. Gareth also tries to play baseball and basketball but tires and over heats so quickly. Take care, Everyone. Margaret
  22. Scleroderma Esophagus

    Hi Kiwi , Have you tried nitro tablets when these attacks occur? Gareth was given them in the beginning when he was having esophageal spasms. Like Shelley, though, I think it's something else..........don't know what, though. Keep us all posted. Take care, Everyone. Margaret
  23. What is mepacrine? Have you been on it?

    <<after my plaquenil disaster in april, the consultant has requested via my general practitioner to start on a 100mg mepacrine+cardene(nicardipine)ive read up online about mepacine,>> Hi Lynnie , I was told by my son's rheumatologist that Plaquenil (and similar meds) are usually tried first to 'jump start the immune system' into working properly. It may save going straight to immuno suppressant meds that could deplete the immune system and lead to more infections. Sorry the Plaquenil didn't work for you but perhaps the mepacine may help. If it doesn't, then you can always go off it. Take care, Everyone. Margaret
  24. Joint Pain After Hot Bath

    << his body ( if we don't get him cooled down) will go into a crisis, heat stroke symptoms and he has had a few grand mal seizures, which they tend to think that they were caused by this also, all his tests show no sign of seizure disorder,>> Hi Kelly , Oh my goodness, this is Gareth!!! The first time he past out, I thought it was a grand mal, but the doctor said *no* because he doesn't have Epilepsy.....JUST pseudo seizures. I have to make sure his baths aren't on the hot side to prevent that and not too cold to bring on the Raynaud's. He's also got the Orthostatic Hypotension that comes into play, too, when standing up to get out of the tub. It's so much easier with a shower but, sometimes, it's not worth the argument!!! Take care, Everyone. Margaret
  25. Feeling low

    <<My positive nature keeps disappearing!>> Hi Caz , Welcome to the group, but sorry it's because of your diagnosis. I just want to warn you about something called 'autoimmune induced depression.' The same process that is attacking your body can also affect your brain/chemical levels. My own son went into depression after diagnosis. Please don't hesitate to talk to your doctor about needing meds, for depression, if you are having problems coping. There may be nothing you can do to prevent it. Take care, Everyone. Margaret