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About janet905

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  1. Hi Amanda, Sorry you are feeling bad; you should have your liver enzymes checked as soon as possible, even if you have bloodwork every 3 months which is standard for this type of drug. The nausea could be from a liver that is stressed or damaged. Remember, methotrexate is a chemo drug that is metabolized by the liver and it can be very tough on the liver. Some persons are more sensitive than others; don't always assume that these side effects are "normal", so you should talk to your doctor.
  2. Hi jd2011 Be careful with doctors who tell you it is just a bad case of Raynaud's. Some of them don't fully understand the difference between primary and secondary Raynaud's. In most cases primary Raynaud's does NOT cause ulcerations and gangrene nor does it cause deformity or changes in the nailbeds. This would be a connective tissue disease such as scleroderma and you need to be examined by a rheumatologist that is well-schooled in connective tissue disorders. I started out on nifedipine also, but as my vascular problems intensified I soon switched to viagra. This drug saved what remained of my fingertips. It also helps the pain in hands and feet as it allows more oxygen to reach my extremities. Good luck!
  3. hi ann, i am so sorry you are going through such a difficult time. my heart goes out to you. i wanted to reply to this (i don't post often) because I have experienced "friends" that disappear and feelings of resentment and disappointment from my husband that totally caught me by surprise. like this illness is something we wanted!!! this is similar to the abuse we get from the physicians that tell us it is all in our heads or don't think we are really dealing with real pain. my significant other reminds me often how I have derailed our plans for the future. also is not too thrilled that we spend more money on health care because of my inconvenient illness. and I really feel lucky that he is usually a pretty good guy. i felt a little less alone after I read an article recently that talked about how many relationships go south after the illness or death of a child or family member or the chronic illness of a spouse. some people can't step up to the plate. they are the weak ones not us. but we suffer physically as well as mentally. i don't know what to say to ease your pain but I am angry that certain folks don't realize that they were lucky to be a part of your life. they will be the unlucky ones in the long run. the shoe will probably be on the other foot one day. venting helps!
  4. Enjoytheride, just to make sure your urinary tract is working well, a chem panel and urinalysis would certainly be warranted. You don't have to wait until you "see" something for the lab to rule out serious problems. Some things such as protein, white blood cells, etc. can be detected under the microscope and with chemistry tests that are in extremely small quantities. The cloudiness may even be vaginal mucus. Either way, don't wait to get it checked out.
  5. hi tammy, glad to see u are back. aren't u on the northshore? hope u are doing well!
  6. Sorry, must have been speed reading and didn't finish your post. Should work as well if you take 2 of the lesser strength capsules. my insurance still pays for the generic 30 mg.
  7. Hi Stacey, The otc prevacid isn't the same milligram strength as the prescription. you can't get the 30 mg prevacid otc.
  8. hi northendpoet, so sorry you are going through such a difficult time.i have been there and still have some days like that. i too was told I was depressed after I was diagnosed with scleroderma. i tried an antidepressant with no good results. one of my doctors( a very wise one) told me the antidepressant didn't help much because the real problem was ILLNESS and exhaustion. they look a lot like depression. doctors often don't recognize that we were formerly active vibrant folks who now have to contend with anemia, severe pain, changes in our bodies that would flatten the average person. we, however, tend to keep going and pushing ourselves and add frustration with that(long time to diagnosis, lots of tests and doctor visits) and anyone would snap under that pressure. being waterboarded would be easier! i feel so much better now than I did in the beginning. i am stronger, work full time and stay fairly fit these days. of course I am not normal healthwise, but recognize that, and do the best I can. you will find your way through all this and be stronger for it. just remember that we are here for you and know exactly how you feel. most of us have walked that long walk. and yes, it's ok to feel sad sometimes!
  9. hi peggy, sorry to hear about your fingers. this can be so scary. i have had several crooked fingers but only one that started to curl. it seemed to happen overnight. i suddenly developed a thick hard mass of collagen on the top of my right ring finger. it made the finger start to curl under as it tightened. as I have to use my hands so much I knew I had to do something drastic to stop this! i already had done hand therapy and have a parafin bath which both help, but this was different I have a good orthopedic surgeon who has injected my wrist when it became stiff and painful so I went to him and asked him if this might stop the collagen buildup and curling. he said he didn't know if this would help as he had never done this before ( he had only treated one sclero patient before). but he said lets see if it works. he injected a lot of cortisone into my finger ( don't ask how painful this was) into the hard fibrotic stuff on top of the finger. it immediately started shrinking the hard tissue and over the course of a few weeks I could straighten my finger again. the finger still feels weird on top (like marble). i have not had any more finger curling yet , just joint pain. hope this helps. janet
  10. i'm on the white horse in the background.
  11. me hanging out with some of my horses. pomelo on the right, and choco on the left. vodka in the background.
  12. Hi tj, I'm so sorry about your worsening symptoms. that must be so hard . gidget is right about the cyclophosphamide. Persons who take the oral form are at much greater risk of developing bladder cancer down the road. you should discuss the possibility of using the iv route with your doctor. I hope it helps you a lot. hang in there!!!
  13. hi karen, before I was diagnosed with limited sclero, one of my first symptoms was carpal tunnel and back pain. my x-rays were normal at the time. i felt like a hypochondriac but was in real pain. the x-ray tech was the only person who noticed that my hands were puffy. that was one more clue that helped me figure out the puzzle. my rheumatologist has me classified as having RA along with sclero (bloodwork was all positive for sclero) even though my initial bloodwork did not point to RA. now my most recent x-rays of hands show some areas of thinning bone(osteopenia) in just the last few years. the rest of my skeletal structure is ok (except for painful joints). don't feel like you are crazy, this disease takes a long time to show itself as somthing recognizable. janet
  14. such a loss to everyone. a truly brave and selfless person. she will be missed.
  15. hi ani, good question. and no you don't sound vain at all. i have had botox before and after I was diagnosed with limited sclero. my dermatologist and rheumatologist had no objections. i have also had juvederm lip injections (it's hyaluronic acid, not collagen) and laser skin treatments. it makes me look better than I usually feel. that in turn tends to make me feel better. i would, however, have any procedure like these done by a well - reputed dermatologist who is familiar with scleroderma. I have had great results with these procedures and no unusual side effects. i only have hard skin on several fingers and not my face. for my fingers that started to harden and curl, i went to my orthopedic surgeon and had cortisone injections into the fingers themselves and it helped stop the hardening and actually decreased the thickness on the tops of my fingers. helped the pain too. the pain of the injections was worse than just about anything else I have had done. but worth it since my hands work fairly well still. he had never done that procedure before since he only has had one other sclero patient but I thought it would work like the wrist injections I've had in the past , and it did ! I think doing things that help your self esteem and keeps you feeling more "normal" might just help battle depression and improve our overall health. one more thing that has really helped my overall wellbeing and energy level is the revatio (viagra) that my rheumatologist started me on last fall. it has decreased not only the fingertip ulcers and tends to speed their healing, but I have less muscle fatigue and more energy in general. i guess it helps increase blood flow to the whole body and therefore the tissues are less oxygen deprived in general. it has been amazing. i will definitely stay on this drug!. hope this helps. janet
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