Jump to content
Sclero Forums


  • Content count

  • Joined

  • Last visited

Everything posted by Karenlee

  1. coffee elimination

    My dermatologist told me no sun also. He warned me not to try to "tan away" my Telangiectasia. But he never said anything about tan in a can :P
  2. Janey Willis: ISN News Manager

    Congradulations Janey! You always provide such good information, we are lucky to have you!! :)
  3. Itching relief

    ced, I do not have itching from the sclero per se, but when I had the reaction to the Prednisone, I took an oatmal bath and over the counter antihistamine and that seemed to help. I did see a Dermatologist a few weeks ago and he gave me Dovonex which is used to treat eczema (which I do not have). My rheumatologist says that will do nothing to help my Sclero but maybe it would help you with your eczema. Hope you find some relief soon!!
  4. Prednisone update

    Hi Bunky and Tru, Tru, my doctor did tell me to take an over the counter antihistamine (oral). That and the oatmeal bath really helped. I looked online at the side effects of Prednisone and the hives,itching and rash were listed under the "uncommon side effects" consult medical help immediately. I was surprised that my rheumatologist was unaware of these side effects and that he found it "highly unusual". I don't have any food allergies and didn't eat or do anything out of the ordinary yesterday. Was just laying in bed reading when it suddenly hit me with the itching and hot red skin. He also asked if I had eaten any strawberries (???) which I had not. Oh also, I had noticed the day before that I was very warm and clammy, like kind of sweaty. So, instead of 3 pills a day he told me to try taking 1/2 today and see how I feel. I hope I don't have another reaction because my husband went back to work today and I am by myself.
  5. Prednisone update

    Interesting that you say that Craig because I have an updated update. Today I had a severe allergic reaction to the Prednisone. Itchy, hives, rashes on my arms and legs. It felt and looked like I had a 3rd degree sunburn. I took a bath in oatmeal to try to get some releif. My husband called my Rhumetologist and he said it was highly unusual that I had a reaction because prednisone is used to treat hives. Anyway he told me to stop for today and begin again tomorrow with only 1/2 pill and see how that goes. My husband just ran out to get some over the counter anti-itch cream so hopefully that'll help with the itching. It's maddening! :( Two steps forward and one step back.
  6. Hi everyone. I know this seems shallow and there are more important things in life like getting healthy but I have a question for those who are taking or have taken Medrol and or Plaquenil. Has anyone experienced weight gain? I have been reading up on side effects and weight gain and swollen face was mentioned. I know, its a vanity issue but I was just curious what others have experienced. Thanks!!! Karen
  7. Hi Tru, Your post was really interesting. I agree that there are unfortunately many more people out there undiagnosed. Some cases creep up so slowly that the symptoms just seem random and singular rather than the whole of one disease. I find it frightening that there are doctors that have never even heard of CREST. It's understandable that the general public is unaware (myself included until just about 3 weeks ago) and trying to explain to your loved ones is hard enough, but trying to tell a physician can be harrowing. If you don't mind me asking, what was the condition that Raynauds caused that lead to your toe amputation? Karen
  8. arthritis

    Hi Snowbird, I have been taking cod liver oil and fish oil (omega 3's) but I hardly felt a difference until I started Prenisone so I cannot really give you a difinitive answer other than it can't hurt to take those suppliments. (unless her doctor says otherwise). Karen
  9. Prednisone update

    Hi Tru...that's awesome that you are recovering so quickly the way you are! Prednisone seeems to be that wonder drug we all hope for. Yaaaaaaay!!!!! Susie...yes, I have noticed an increased appetite as your hubby has. I'm trying to control it, but it does get the best of me at times. My hubby says I've been "loud" lately and a bit agressive. I told him that it's not me and it's the steroids but there's only so many excuses Lol I suppose after I wean off and get on the Plaquenil these side effects will taper off (I hope). Karen
  10. Ambien Nightmare

    Wow Barbara, so sorry you had such a crazy night!!! I'm sure your daughter knows that wasn't you really doing those things and it was the medication. I hope your ok. Karen
  11. Effects of Smoking and Ways to Quit

    Sheryl, Thanks for sharing your story with us. I can't beleive what a hold these things have on me. I did cut back to just about 1/2 pack a day, but I know now that means nothing and my goal is to quit. My Dad smoked for years then one day just put them down. Went cold turkey. This was back before there were all of the patches, gums, and pills on the market. My Father in law quit the same way. Just put em down and never smoked again. I suppose a lot of my fear is weight based. I know it sounds like an excuse and it probably is, but between quitting and being on prednosone I'm terrified of gaining weight. But I suppose fat and alive is better than thin and sick. Tru, I didn't know that it stays in your system for 72 hours! :o I guess that's why they say the first 3 days are the worst. Karen
  12. Prednisone update

    Thanks everyone. I finally got some sleep last night, but I did have to take some meds to help with that so, now I am a bit groggy. Ah the roller coaster that is CREST. Although I wasn't thrilled to have to take more meds on top of what I am already taking, being able to sleep was thrilling. Bunky---I beleive that Plaquenil has the chance to cause eye issues, so the refferal my Rhumetologist wrote to my eye specialist just said: "Unspecified connetive tissue disorder, CREST variant, will be starting Plaquenil, please evaluate visual fields". Sorry, I know that's not much of an answer. I'll look online and see if I can find a better, more clear answer. Sadie---yep, I have a cat, her name is Shelly and she is a spoiled little kitty as well. :)
  13. coffee elimination

    Hi snowbird, I would imagine the salt has inflamitory effects like water retention which can aggravate the joints as my hands are super puffy and swolen. As for the sugar, I'm not really sure why. I don't eat sugar so I didn't press the issue with my doctor for a reason. I am a salt lover and over season everything so it's gonna be a challenge. Everyone keeps mentioning alternative seasonings :( I doubt that's gonna help much but it will be interesting to try different seasonings to make up for the lack of salt. Karen
  14. Effects of Smoking and Ways to Quit

    Tru, So sorry you had to go thru that. I cannot even begin to imagine how scary and diffucult that was for you. The reason I asked was I too (hangs head in shame) am a smoker, and was told by my Dermatologist that if I did not stop smoking I would lose my toes. So far I have tried the patch but that did not work for me. I have heard a lot of people have had success with a new medication called Chantix. I am going to ask my primary care physician for a script and try that. I know I have to quit. It's just tough when within one week you are told: "Stop drinking coffee, no more sugar, no more salt and stop smoking". What else is there to do? Lo Jk. Anyway if the Chantix works I'll let you know and maybe we can be quitting buddies. :) Karen
  15. Nurse visit

    Sadie, Please do go soon and keep us posted. I really hope it heals up for you. I'm sorry you are having such issues with it. Shoot me an email or message me if you want to talk. Karen
  16. coffee elimination

    Sheryl, I sneak a cup or so in every now and then. I just love it so much it's so hard to go cold turkey. As long as you keep your heartburn in check, I think like you said, it's ok to indulge just a bit. Karen
  17. coffee elimination

    Hi Sharon, That why my Rhumetologist that told me about the coffee. He also said no more salt or sugar. I don't eat much sugar so that didn't bother me but giving up salt is gonna be tough. Karen
  18. New Member - Karenlee

    Hi everyone. This is my first post on this forum. I can't tell you what a comfort it is to have others to talk to about these issues. I am recently diagnosed and completely anxiety ridden. Anyway, I have the red spots on my face and hands, and some on my chest. My dermatologist told me to put vitamin K cream on my face and that may help. It can be found in natural food stores. I just started a couple days ago, so I will keep you posted as to any progess (if any) on the red spots. And yes, I love the upside of no wrinkes. At least we have that going for us huh? ;)
  19. Nurse visit

    Sadie, What did your home care nurse say about it? Should you go have it looked at? I would think if it's getting worse you should go see someone. I don't know how long it should take to heal but if it's looking as bad as you say, please have it checked out. Karen
  20. New Member - Karenlee

    Hi Sadie, When they first started appearing on my face, my sister thought I was drinking too much and had gin blossoms :P
  21. New Member - Karenlee

    Hi Cheri!! Haha you sound just like me! I googled my brains out after I heard the words CREST and Scleroderma and nearly passed out from fear. I wanted to know everything there was to know about it. Although it was a bit overwhelming, the upside is we found this forum and all came together. :)
  22. Sheryl's New Position

    Yaay Sheryl! I missed last Wed but will be sure to be on next week. You'll be a great mod for sure. :)
  23. SCOT Study

    Hi BMW, No, I have no personal experience with it but that's great that he's seeing improvement. Keep us posted on his progress and good luck.
  24. New Member - Karenlee

    Thanks for the warm welcome Snowbird. Nice to meet you. Albeit under these circumstances. Yep, I was pretty much a walking zombie for a couple of weeks until I had an actual diagnosis. Unfortunately I had a bad Dermatologist who made me horrified, but my rheumatologist is an angel and I'm so lucky to have him looking after me. Plus this forum is so comforting. The most wonderful warm people on here. :)