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Everything posted by Purr

  1. Undergoing Stem Cell Transplant

    That's great. It sounds 'very' promising!!!! I'll be thinking of you both. Hugs and best wishes, Christy
  2. Raynaud's help

    Berrydahl, I haven't had digital ulcers yet, but I get dry, cracked finger and thumb tips. My doctor has prescribed nitro patches, 0.1 mg. I just started using them today. You wear them for 12 hours and off for 12 hours. She wants me to wear them during the day. She said, hopefully, it will help prevent digital ulcers. I'll let you know how it goes and also if I have any side effects. OK? Christy
  3. Pain in Jaw

    Oops! I wear a retainer, not where a retainer. Going to be one of those days............ Christy
  4. Pain in Jaw

    Hi Berrydahl, You might try looking up TMJ on one the medical sites. It's has to do with the jaw and can be caused (or worsened) by scleroderma. I have it and where a 'retainer' (?) to ease the clenching and pain. Christy
  5. RE: hand pain

    I was just diagnosed with mild neuropathy in my lower legs and feet (mainly the right side). You might want to check one of the medical sites about neuropathy. It can cause most all of the symptoms you're describing. I get burning, tingling, numb feeling. It usually gets worse in the evening but hasn't bothered my sleeping. Recently (like last night) I started having shooting pain in my lower right leg. The neurologist is taking me off of my current anti-depressant and switching me to cymbalta. She says it should help take care of the pain and also any depression. Sunday I'll stop taking the anti-depressant completely for about 4 weeks. Sure hope I don't have any trouble. This isn't the time for it!!! :unsure: Ah, the ongoing adventures of scleroderma! :P Take care all, Christy
  6. Dry Eyes

    I use nasal saline spray too. And I use artificial tears and Restasis for dry eyes and sugarless gum for dry mouth. My Sjogren's just started getting worse so I have a humidifier in my bedroom and family room. All of those things help a lot. Hope you find some relief, Clementine. Christy
  7. Costochondritis?!

    Hi Razz, Thanks for sharing that with us. I'll file the info in my 'medical' folder. Take care, Christy
  8. My Brother Honored For Veterans Day

    Thanks for sharing with us, John. And I second your "Bless our service men and women" statement. They're special people. Bless you, too, Christy
  9. Bitter Taste

    Does anyone else experiencing a bitter taste. I'm wondering if it could be one (or a combination) of the medicines I take. It's really yucky!! :P I'm fine first thing in the morning, but after about an hour the bitter taste starts. Christy
  10. Bitter Taste

    It's me again. I think the "cloud" has lifted from my brain (temporarily??). I have sjogrens. It hasn't been very severe, but lately I have been experiencing more dryness in eyes, nose, and throat. That could be what's causing the bitter taste (sugarless gum suggestion) and very mild burning on the roof of my mouth and in the nostrils. Looks like I'll have to be more diligent about using the moisture spray for my nose, eye drops, and drinking more water. Does the sjogrens sound like a possibility for my discomfort? I'm not sleeping well again, too. I've been waking up about every 2 hours, even with taking a time released sleeping pill. The dose I'm taking is 6.25 mg. If I take 12.5 mg it makes me groggy most of the next day, but I do sleep better. Most of what I'm posting has already been posted by others, but my memory being what it is.............what can I say. Thanks for being here. Love, Christy
  11. Bitter Taste

    Thanks everyone. I'll have to try the sugarless gum. Another thing I thought it might be is a stomach ulcer. I had one about a year and a half ago and this is similar. Just incase it is, I'm going to stop drinking coke (caffine free, diet) and carbonated beverages, no chocolate :( , no tomato or garlic......this is a bummer!!!! <_< I'll raise the head of my bed alittle higher too. Oh! And I'll switch from excedrin to tylenol. Wohali, I've never taken Flagyl and I know I don't have thrush but thanks for you help. Karenlee, I take caltrate twice a day and centrum silver multi-vitamin once a day. Sure hope it's not that!!!! Thanks again, Christy P.S. The holliday tree I ordered just came!!!!! I'm READY to decorate! :)
  12. Hi everyone, This is my month for making doctor office visits. Yesterday I went to my rheumatologist . My CPK level is up again so I'm back on 1cc of methotrexate and 15 mg of prednisone. If that's what it takes to help me live a normal life (for who knows how long) then that's what I will do. I know the side effects of both medications and I'll take the risk. It's the polymyositis that is acting up. Today I had a bone density test and it shows that I have osteoporosis in my left hip and bone thinning in my left arm. Funny, it's my right hip that I have trouble with. :huh: On the bright side, my PFT results look better than last year's. Next week I have a mammogram :P and a CT scan and possibly a nerve test on my right leg. I'm waiting to get a call from the neurologist's office. Well, that's my news for the moment. It's a gorgeous day here. We're suppose to have rain later tonight. There go all of the leaves :( . Everybody take care, Christy
  13. Dr. Appointment Season

    Nope. I haven't had any hair loss. :)
  14. Hi Karenlee, That's something I've never experienced. But, I'm glad to know that NSAIDs help you! :) I can't take them anymore. 2 years ago when I was diagnosed with arthritis I used NSAIDs and ended up with a gastric ulcer :P . It was all down hill from there (not because of the med). Take care. Christy
  15. Dr. Appointment Season

    I saw a neurologist this morning and found out I have mild neuropathy in my feet. That's what the pain, burning, and numbness are from. She said it isn't unusual to have this with scleroderma. She is switching my anti-depressant, so for the next two weeks I taper off of my current med, wait four weeks, and then start the new one. Don't know that the holiday season is the best time to do this, but it may not bother me at all. The reason I was given the anti-depressant to begin with was to stimulate my appetite. The new med is for depression and also for the neuropathy pain. Sure hope it works!!! Peggy - from my personal experience I can't say enough good things about methotrexate. It has helped my polymyositis tremendously and is also the treatment for arthritis and scleroderma. I've been on it for almost a year. When I first started I had mild nausea and was tired, but that eventually went away and now I don't have any side effects at all. I don't recall ever having any pain from polyM, just extreme weakness in my shoulders, arms, and thigh muscles. Razz - let us know how your appointment goes tomorrow! Lots of good wishes to all, Christy
  16. Dr. Appointment Season

    Thank you Shelley, Janey, and Judy for your good wishes and sympathy. I really appreciate it. The methotrexate has already started to make a difference. I gave myself my injection Wednesday and when I took a shower yesterday I didn't have to put my hand on the wall to steady myself! Amazing. PolyM is very scary to me so I'm sooooooooooo glad the methotrexate works as well as it does. Have a blessed day. Christy
  17. I have GREAT news

    Wonderful news, Gina!!! What a great relief that must be. You've found an outstanding group of people for friendship and support. Don't be a stranger. Cheer and comfort, Christy
  18. Trying to find my sense of humor...

    Hi Ann, Good grief!!! I would say you're due for some 'good' things to happen. I hope all of the suggestions you've been given help. I especially like the writing suggestion Emmie gave. I do that every night. It helps relieve alot of emotions. Please take care and I hope things improve for you soon. Christy
  19. Hanging streamers and balloons

    Hi Razz, I love parties too!! The food planning is my favorite part. So glad yours went well. Ah, to be 21 again (but more mature..... <_< ). Christy
  20. GERD pillows

    Lyn, I don't think there is a way to keep from sliding (unless maybe using alot of velcro!). I've had my bed elevated for several years and still have the sliding problem. If the adjustable beds weren't so expensive I'd buy one of those. Christy
  21. Hi Sharon, I also have the hand and feet swelling. It usually starts bothering me in the evening. The swelling isn't very noticable (at least to me), but when they get like that, even socks hurt my feet. I have to cut the little thread of elastic at the top because it feels like it's cutting off my circulation. I end up taking off the socks because my feet burn so bad it feels like I'm walking on ridges. My hands don't get quite so bad. I do like Razz and prop my feet up for a while. Christy
  22. Flu Or Pneumonia

    Hello Barb, I had a general practitioner "for awhile" who sounds similar to yours. I never knew what to expect when I went to see her. One time she would be so caring and concerned and then the next time she would be very abrupt and sometimes a little hateful. Once, she was looking at the medications I was taking and wanted to know "Who told you to take THAT!!? I wouldn't have!" Well, guess what, she did!!. She lost quite a few patients. On her good days though, I really liked her. She was a 'before scleroderma' doctor. Hope you're continuing to improve. Take care, Christy
  23. How do you keep warm ?

    Hi Lizzie, Like the others, I drink hot tea or the micro-wave soup. I wear gloves when I get in the refrigerator or freezer and go out to get the paper or mail. Started the glove thing about 2 weeks ago. Good ol' Indiana. Tuesday night it got down in the 20s. Brrr This year I'm splurging and buying good quality long underwear. The pants are silk. My brother got some for my sister-in-law a couple of years ago for a gift and she said they're wonderful and there's no static cling. I also got some silk interlock glove liners that can be worn with gloves or mittens. I bought a box of Hot Hands that can be purchased in most drugstores and Toasty Toes (same place). Last year my furnace kept going out (bad gas valve). That was awful. Seemed like it always happened about 6:30 or 7:00 pm. I had a new valve installed and HOPE that does the trick!!!! Well, I've rattled on enough. Hope this helps. Take care and be warm, Christy
  24. Disability

    Hi Cin, If you a do a search on key work 'disability' there is a post titled Social Security. That should help answer some of your questions. There are several of us on here that have been through the process and are receiving disability. Personally, I think Jefa's reply is the best. Take care, Christy
  25. Book Recommendations

    I would like to find a book for lupus and for polymyositis written in non-medical terms (in other words, so that I can understand it). I already have an excellent book on scleroderma. I have been having some problems lately and my rheumatologist called and increased my predisone to 15 mg for a week and then down to 10mg until I see her on 11/5. She also increased my methotrexate back to 1cc from .8cc. She said the blood work I had done on 10/16 was slightly abnormal, but didn't give an detail. Since I'm not sure if this kind of info is allowed to be given on this forum, please send any recommendations to [email protected] I would really appreciate it. Since I have mixed connective tissue disease I feel I need to keep up on these nasty little "goblins". I hope everyone is enjoying what's left of this beautiful fall season. I'm not ready for the cold but there's always a way to manage. Best to all, Christy