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Everything posted by Sweet

  1. Sweet

    Why do we panic?

    Hi MaryBeth, I have been on Plaquenil for 18 years, no problems at all. The way it was explained to me by my Scleroderma specialist, is it has the ability to slow down and or HALT any progression. So I'm all on board with that. It helped with my pain as well tremendously . It is extremely important however to get regular Plaquenil eye exams. One right away as a baseline and then depending on what your doctor wants, every 6-12 months.
  2. Sweet

    Heredity in scleroderma

    Hi Tazzie, I'm sorry to hear about your daughters diagnosis. Jo gave you a few good links, I hope you find them helpful. She also gave very good advice. Thank you for posting, and please give my best to your daughter and you!
  3. Sweet

    Jo Frowde: ISN Board of Directors

    Congrats Jo! You're a rock star! Thank you for all that you do.
  4. This is so true, and so often it happens at night. In all my years nursing, you'd be surprised how many people presented to the ER thinking they were having heart attacks, but really it was a panic attack/anxiety. It can be frightening.
  5. Sweet

    Upper Endoscopy/Colonoscopy

    Hi Clementine ;) Nice to see you post. I see you already received an answer, but my experience is there really aren't any rules when it comes to a lot of the testings we receive. It truly depends on you, your symptoms, and your providers preferences. My motto is unless it's absolutely necessary, I give it a pass.
  6. Sweet

    Expenses after Medicare

    Hi Bud, I'm sorry to hear about your son Jesse. Have you looked into a supplementary insurance? I have Medicare, but I also pay for a supplement insurance that pays for everything Medicare doesn't. Just a thought. Best to you all.
  7. Sweet


    Hi Jeannie! So great to hear from you. I have always enjoyed your posts. Much love to you!
  8. Hi Anona, Welcome to these forums! I have been on Plaquenil for 18 years. I did have side effects for the first 3 months. Which according to my Dr. is how long it takes to see if it helped me or not. The side effects I had was nausea and severe hair loss. It almost looked like I was on chemo. I hung in there and all that settled down and my hair came back. No problems since. You should have a baseline eye exam, and one every six month for the first two years and then one a year after that, as blindness can take place and once it's starts it irreversible. I have exams every year, along with ultrasounds and a few things I don't know what they are called, but its extensive. I've never had a bad eye exam. I would encourage you to stick with it. Not only does Plaquenil help with pain, but it also helps with fatigue AND... here's the biggie, it can slow down your progression or halt it at the stage you are now. Please let us know how you are getting along over time.
  9. Sweet

    Rheumatologist Answers.

    I've always had a supportive spouse so I'm grateful for that. However many friends and family just don't get it. I went to great lengths in the beginning to explain. I gave printed information, websites, had one on one conversations, and with some it just didn't matter. I would get "Well maybe tomorrow you'll be all better", or "It will be so nice when you are over this" My heart goes out to you because when it's a spouse that's a tough one. I know of many marriages that didn't make it through the diagnosis. Sad but true. I do hope she can grow to have an understanding. For the rest... I quit wasting my time. Some will never get it.
  10. Sweet

    Back again, still not diagnosed.

    Hi, I would definitely mention it to your primary care provider. And I get what you mean about being the professional crazy patient. So sad that at times we have to feel like that.
  11. Sweet

    Skin in Shower.

    I do believe it's sclero related, and my Rheumatologist agrees. As to what helps, it's hard to say. It comes and goes all on its own. It's so frustrating. I only shower 3 times a week and I use an oil to clean. I use NO rags or any scrubbers, just my hands. I keep the water close to cold. The hotter the water the worse it is for me.
  12. Sweet

    Skin in Shower.

    Hi SoulDancer, I can relate completely, but I don't think I'm as severe as you. I'm truly sorry. My issue doesn't happen every single time, but I would say 80% of the time. There is no rhyme or reason to it and I've tried all kinds of things. It's frustrating I know. I hope the links were helpful to you.
  13. Sweet

    Rheumatologist Answers.

    I'd be looking for another doctor.
  14. Sweet

    Pain Fatigue Malaise and Chills

    Hi, I'm so sorry to hear of your discomfort. I can relate all to well. I must say I'm disappointed in your doctor for his response. As you have already read from previous responses there are so many options. Jo gave you a link to find a scleroderma expert. I highly encourage you to make an appointment with one near you.
  15. Sweet

    Tissue donation

    What a great topic! Something I had never even thought about.
  16. Hi Mando, Truly sorry to hear of your cardiac problems, but really happy you are following up on it! Will be patiently waiting for more info. :) Shelley, you are always such an inspiration to me and others. Great advice my dear friend. xo
  17. Hi Mando, This is very interesting to me. I've been on hydroxychloroquine since 1999. I have often had irregular heart rate, mostly tachycardia, which has lead to numerous cardiac work ups, but everything ends up being normal. I think I'll do further research on this. Please let us know what your ECHO shows and if your rheumatologist decides to keep you off the meds. I went off them once and within days could not function, I was in so much pain etc. Please let us know how you are getting along.
  18. Hi Matt, Welcome to our forums. I'm really happy you found us. I'm sorry to hear of your localized Scleroderma. This disease can certainly be a challenge, but sounds like you are handling it like a rockstar. Jo has provided you with many good and informative links. I do hope you find some answers in them. Again welcome!
  19. Tears! So sad to hear this news. Sending love to her family and friends.
  20. Sweet

    Skin care ingredient query

    Hi Amanda, I use all of the above, and have for 30 years with no adverse reaction. Both my rheumatologist and dermatologist are on board with it, and state its perfectly fine. My two cents worth anyway. :)
  21. Sweet

    Soft soap for sensitive skin.

    Thank you for the info. I would love to know what it is if you wouldn't mind PM me. :)
  22. Sweet

    New here.....just diagnosed

    Hi Linda, Welcome to the forums. I'm so glad you've found us. Fatigue indeed is certainly an issue. It's a BIG one for me. You're starting out right by seeing a Sclero specialist, so kudos to you on that one. Really look forward to hearing the outcome of that visit. Keep us posted.