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Everything posted by smac0719

  1. I took Lyrica before I was officially diagnosed and did not have any known side effects from it. I have not taken it for a few years now.
  2. Thank you Jo. I was supposed to speak with the clinical trial coordinator today to get more information about the study, but that didn't happen as planned. Hopefully we'll connect tomorrow.
  3. Thanks Janey for the response. I have been on methotrexate since 1/07 and it has been increased from 10mg to 25mg over the past 4 years. I've had good success with it in terms of the tightness of my skin and discoloration improving as well as the fatigue and overall achiness, but I guess it doesn't work for lung involvement.
  4. Hello all...it's been a while. I had a visit with my sclero specialist and he suspects some lung involvement as a result of a ct of my chest. I have an option to start taking cellcept 500mg 2x a day or enter a clinical trial where I may receive cellcept for a year and a plecebo for a year or cytoxan for 2 years. I found a post from 2008 with some thoughts about both. Is there anyone taking either of these meds now or has taken them within the past year or so? I'd like to know any thoughts on the effectiveness, side effects, etc...
  5. Happy New Years Eve everyone. It has been some time since I've last posted. This year has been interesting for me. I am curious to see if anyone has experienced tongue pain that doesn't seem to be brought on by anything in particular. Recently, my tongue began to hurt, which made eating somewhat difficult. I didn't burn it and it also hurt to touch it with my finger. The pain eventually went away, but I found it to be quite disturbing and annoying. I searched previous posts and didn't see anything quite like what I'm describing. Any feedback and/or remedies will be greatly appreciated.
  6. "But you don't look sick"...if only I had a dollar for every time I've heard that one! It's amazing how many people form assumptions based on looks alone. Of course this happens outside the realm of illness too and I have been guilty as well, but becoming a Sclerodermian has changed my outlook on a lot of things. We can only try to stay positive and use these instances as an educational opportunity.
  7. Sam that is great news as you have been so diligent with your fight for some time now. I hope you are keeping warm.
  8. Hello Sweet, You have sure been through a lot over the past year and I am hoping for a diagnosis and sucessful form of treatment for you soon. Your positive attitude will surely be beneficial to you during your healing process. You'll be in my thoughts.
  9. Barefut, This reminds me of a post we had about this subject last year some time. I too have become very forgetful. If it is not added to my calendar or written down, forget it...literally! I have forgotten children, appointments, food cooking, what I was doing, where I was going, etc. We are about the same age and I too wondered if I was pre-menopausal. The forgetfulness worried me a lot, but I do very well when I "remember" to make a list or put things on my calendar. I try to write down appointments as soon as I make them. I keep a note pad in my purse, car, kitchen and office so when a thought comes to mind I can write it down. I then transfer it to my planner which I keep with me at all times. I also send myself reminder emails at home and work. You are not alone.
  10. YF, Hello to you and the Missus. Glad to hear from you and to know the both of you are well. P.S. Be glad you don't have the bra issues :D
  11. Willow, I am sorry to hear you are having such problems. I hope you are able to find a cause and treatment some time soon.
  12. Hello Margaret. Glad to hear things went well with Gareth's test.
  13. Hello Seton. I developed skin pain within the first year of my symptoms and it lasted about a year or so (started my symptoms in 2004 and diagnosed in 2007). It was limited to my arms and legs though. Clothing, sheets, and the likes didn't bother me as much as someone touching my skin. I have a friend who would lightly hit my arm every time she spoke. It's just something she did and it took a while to get her out of that habit as it caused me immense pain. I hope you can find some help in treating your pain soon.
  14. Barefut, I hope you are feeling better these days. I remember in the not so distant past days like you describe. I too was working and had children that depended on me. I was a "workhorse" and keep everyone moving and everything in working and functioning order. It frustrated me to no end that I couldn't do the things I was used to doing or that I wanted to do. But then something happened....I realized I was not Superwoman and didn't have a supply of Kryptonite. It was ok that the clothes didn't get washed, the floor mopped or vacuumed. I did what I could and allowed my body to do it's thing while encouraging my mind that "this too would pass". Because I was not diagnosed yet, none of my doctors would give me anything for the pain. I began to let others help me which was hard for me to do, even family members; I allowed my able bodied teen sons to help out a little more and found they enjoyed soup and sandwich night as much as I did. I did not cook regularly for almost a year while going through the fatigue and pain. Rotisserie chicken, heat and eat potatoes and frozen steamable veggies also became a staple. Don't beat yourself up about the current limitations. Accept them and do what you can for the time that you can. If you get down again, just let your sclero family help to pick you up! Hugs to you! :emoticon-hug:
  15. Hi Amberjolie. I truly feel your frustration with all the doctor appointments. I have been where you are a few times. I have a goiter on my thyroid and after being diagnosed with Sclero, needing to see multiple doctors and always feeleing that I was in a doctors office. On top of that I had "normal" blood tests for the thyroid so I decided to remove one less doctor and stopped going to the endocrinologist thinking my primary could monitor it. Well my primary did, but not to the detail of my endo. My primary referred me back to the endo when my Vit D dropped again for the 3rd time this year. My endo welcomed me back, but was not hapopy that I'd cut her visits out all together. After a thyroid ultrasound, we found the goiter had grown in the time I hadn't been there. The growth didn't affect my labwork results, but I was surprised and she increased my synthroid immediately. I realized then that I will need to talk to the doctor and let them tell me their views on the necessity of follow-up visits before I decide to omit them or visit less frequently. Keep your head up and reach out when it get's overwhelming.
  16. I had a cystoscopy in October and my urologist used a numbing gel. I too was nervous and read that an anesthetic is used, but my urologist said it's such a quick procedure they don't use anything else besides the gel. I really tried to relax while they inserted the scope and that helped. He wanted me to look at the screen while he was "looking around" and I just wanted him to finish. I experienced a little burning with urination afterwards. They gave me an antibiotic immediately aftwards and some pills to help with the burning. Good luck!
  17. Happy Holidays everyone! This is a rather interesting topic and even more interesting to see the varied views. I was advised by my Sclero specialist not to take Ibuprofen or any NSAIDS when I was first diagnosed. I was an Aleve queen and felt it provided the fastest relief. I have since been using Tylenol and it's prescriptive derivatives when I've needed something stronger. He never said why I shouldn't take it or maybe I just don't remember, but I will be sure to ask when I see him again in February.
  18. Hope, It is really great that you have taken some time to seek information to better support your mom during this new phase in her life. I am near your mom's age, but my sons were younger when I was diagnosed a couple of years ago. I took them with me this year when I saw my sclero specialist so they could see the testing I go through as well as give them an opportunity to ask questions. You've been given some great advice. Don't hesitate to utilize this site for support for yourself as well. Take care.
  19. CraigR, Best wishes to you with your appeal. My thoughts will be with you during this next phase of the process.
  20. March, It's interesting that you mention a strong oder with urine. I too have experienced that and when it occurs automatically think I haven't had enough water so I start drinking more. I wonder what causes that when there are no other "symptoms"?
  21. I don't know much about ANA, but my highest was also 1:640 and speckled. That along with a positive skin biopsy, tight skin, skin discoloration, chronic fatigue, rheumatoid arthritis led the dermatologist to diagnose me with scleroderma and send me to a sclero specialist. None of my other tests had been positive up to that point.
  22. Excellente! Glad to hear some good news.
  23. Best wishes Sweet. My wish is that everything will go well.
  24. You're so on top of things Shelley. I miss her too and think of her often. She is such a trooper and fighter, it's amazing. Sorry to hear she needs a transplant especially after going through so much healthwise over the past year. She will remain in my thoughts.
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