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shennen0820

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Everything posted by shennen0820

  1. Just wondering if you have previously had kidney involvement...my rheumatologist stresses to my how important it is to watch my blood pressure as this can be a sign of kidney involvement...if you do not have kidney involvement previously then I would insist on a blood test BUN/creatitine (checks kidney functions) and also a urine test to UA/C&S (also checks what is going on in your urine which is basically produced in the kidneys) to make sure that there is no kidney involvement...(I am a nurse so I have a little bit of knowledge of these tests)
  2. Just found on a site to try bag balm...it is something that farmers use on cow's utters...a vet who has sclero tried it and it seemed to help according to her story...last night I think I scratched all night long! I am going to try to find this stuff and give it a try
  3. Heather T I so know what you mean...I have not been on any meds yet or started any treatments so hopefully I will become pregnant soon! It is just scary because who knows what will happen...get better or get worse during pregnancy. I will have to see what happens
  4. itchness is all part of this disease..it has something to do with the skin being so dried out...I notice that I am really itchy at night when in bed (I actually have a small scar on my arm from scratching so hard in my sleep)...also if I have a sweater on against my arms I am itchy...I try to lube up with vaseline before bed and it does seem to help...I have tried taking Benadryl and it does not really seem to help much. Check out the John Hopkins website they have some really good information and suggestions on which lotions and soaps are the best to use to not dry your skin out more
  5. Supposedly per the high risk pregnancy physician I have seen, the skin in the stomach will stretch. For me I am early in this awful disease and my hands still work pretty well...getting down on the floor is another story...my knees kill me. So I usually will sit on the ottoman or the hearth of the fireplace to play. When my son was smaller I just had some elbow soreness and a little stiffness in my hands so it was not an issue to get down on the floor. He is 2 now so he walks and stands so it is a little easier...I guess if I decided to have another I would have to find ways around this. I never really thought about it to tell you the truth....
  6. An echocardiogram is an ultrasound of your heart...no medication is injected as far as I know. (I am a critical care nurse, just so you know that I am exposed to these types of tests daily)
  7. This photophoresis treatment is going to be used to help soften my skin...you are given a medicine called Psoralen, an IV is started, and from my understanding this medicine Psoralen reacts with a UV light as your blood is going thru the machine. The treatments take about 3-4 hours and in the beginning they do it 2 days in a row once a month. I guess they evaluate how you are responding to it by having you see an occupational therapist and seeing the dermatologist and the skin scores and all. Then they will adjust the amount of times the treatment is done based on the results. It is supposed to help the T-cells calm down and to stop making collagen (or at least slow the production down). I guess it is not an "approved" treatment for sclero but it has been done and they have seen some good results according to the dermatologist at Yale I saw. He basically told me that the hardest thing about the treatment is finding a vein with having such hard skin and getting the ins company to approve it....fournatuly for me my ins did approve it. Thank you all for all of your help...I have found when searching for this that alot of information comes up PUVA treatments...
  8. could it be the change in weather where you live...it is getting colder and making you feel worse?
  9. Sorry it is just that my insurance company approved this and I am trying to make the decision to have it done or not. The doctors make it seem so simple...they don't have to think about the long term effects of this therapy...it is nice to have this website to find out info and learn about all of these things...I feel like I am a sclero forums junky lately!
  10. I just wish that the doctors would all get on the same page...My dermatologist said to me that most doctors do not like to treat sclero...my rheumatologist never even ordered basic screening tests that go along with a sclero diagnosis and never even followed up with me after seeing the dermatologist that she sent me too...I don't get any of them! Plus being a nurse for the past 4 years you really do get a clear picture that medicine is kind of a guessing game...trial and error...if one thing does not work then they try another! I'm so glad we have this website to vent together!
  11. I am very surprised that no one out there has replied saying that they have had this therapy...
  12. Basically the perinatologist said I would just to be followed more closely and I could either see my regular OB more often or I could be followed at Yale. Since I feel very comfortable with my regular OB I think I would just be followed there and have an occasional visit with the perinatologist. He stated that I would need to have more ultrasounds (like one every 4-5 weeks) to monitor the babies growth. That sounded great to me...who doesn't like to have ultrasounds when they are pregnant! I have read (somewhere online) that normally the skin tightening does not interfere with the babies growth. It is too bad that is not more information regarding pregnancy and sclero...Do you have any children Ana? Also you said that you have not been diagnosed yet...what symptoms do you currently have? I am in need of finding a new rheumatologist...Doctors are scary!
  13. thanks for the info...I will check out that site
  14. My dermatologist is suggesting photopheresis therapy...I have read a lot about it but was wondering if anyone has had it done and how is worked plus if there were any side effects...he stated the hardest thing about this therapy is finding a vein with the hard skin!
  15. Amanda...when you had your skin biopsy what did the results show...mine came back showing morphea and the dermatologist had it changed to sclero (as he said it would pull more weight with the insurance company stating sclero)...so I am still confused as to which type I actually have. The dermatologist stated that I have both types... Thanks Shennen
  16. Thanks for passing that along...I am trying to decided weather or not to get pregnant while dealing with sclero...I appreciate every piece of infor I can read regarding sclero and pregnancy since there is not to much to go around. :)
  17. I have been using a dry skin and foot cream (I actually borrowed some from work, I work in a hospital)... It seems to work really well...I have been using it everywhere arms, legs, stomach, face and chest. If you would like the name of it and additional information PM me.
  18. I totally agree...this whole thing is confusing. I have a very low positive ANA-80 and all else is negative. I am unsure which type I actually have. I have had a positive skin biopsy which showed morphea and the dermatologist had the lab change to show diagnosis of scleroderma. I have hard skin on my arms, legs, chest and face. No internal signs so far but do have darken skin on my legs which the dermatologist stated is blood vessel changes. So my confusion is because I have blood vessel changes is it inside to internal organs or do you get this blood vessel changes with limitied? SO CONFUSED!
  19. Thank you to all of you for sharing your stories...it is such a hard and scary decision to make with sclero in the equation. I actually had a great and uneventful pregnancy with my son...except also having my appendix out 7 weeks after delivery. It ended up turning out to be a great time to have the appendix out as it bought me 8 more weeks home with my son. I am a critical care nurse and had to have the appendix out with the "open approach" because is was so bad vs having it done with the scope, so my physician did not want me going back to work with all the heavy lifting that is done during a typical work day. Anyways thanks again for all of your stories...
  20. I was recently diagnosed also...the literature I have found suggests getting baseline testing...so if I were you I would push for the ct scan. This way you have a baseline...meaning from year to year when you have a ct scan they can compare it to this one to see if there are changes. I have found the John Hopkins website extremely helpful with this diagnosis. It has a lot of really good explained information. See Johns Hopkins Scleroderma Center.
  21. Hi I am 33 and was diagnosed with sclero in July 2008...I have a 2 year old son and would like to have another child. I was wondering if anyone out there has had a baby while dealing with this disease. I am interested in knowing which symptoms were exacerbated and which symptoms were suppressed. I am not on any meds currently and am just trying to deal with this on a daily basis. I am in search of a new rheumatologist who is knowledgeable in this disease. I am seen a perinatologist (high risk pregnancy doctor) and was told to go ahead and get pregnant. Since there is not tons of information on sclero in pregnancy I am looking for some help.
  22. Carrie and Judy thank you so much for pointing me in the direction...there is alot of information regarding the photo therapy.
  23. Thanks for your warm welcomes...I am not really sure which type as the dermatologist was not really informative. First I started in about December 2006 with some soreness in my elbow, which I wrote off because I had a baby in July and was breast feeding I just figured it was from that. Then it started in the opposite elbow so I went to see a hand/arm specialist who because it was bilateral sent me for labs and my ANA was slightly positive. I then began seeing a Rheumatologist who was treating this like RA. This past April my hands and arms were extremely tight and I made another appointment with the Rheumatologist but not until July and she diagnosed me with the scleroderma and told me not to look one thing up on the internet and that she going to set me up with an appointment to see a dermatologist down at Yale. I had to wait 11 weeks to see him and basically he did a skin biopsy (which he stated he only did to prove to the insurance company that I really have scleroderma), said that he suggested photophoresis therapy (which he said we better hoped worked), and said he would call in about a week with results. He did not schedule any follow up appointment or explain anything to me. Just so you know my background I am an ICU nurse so I have a very little bit of knowledge about scleroderma but know how medicine works. I have found the John Hopkins website very informative and easy to understand. I have had an echo, ct scan of my lungs, and some lab work which has all been essentially negative with the exception of my ANA level which is barely positive. I ended up taking the ball into my court and from finding information on the web regarding which tests I should have done and then working with my primary doctor he ordered them (which I kind of felt the rheumatologist should of been ordering since I was waiting this 11 weeks to see the dermatologist). I still need to have pulmonary function tests and a barium swallow done. I have no GI symptoms...but do have some blood vessel changes to my legs (diagnosed by the dermatologist). I am just a little confused as to who should be in charge of this whole treatment. Should the rheumatologist be in charge because it is an autoimmune disorder or the dermatologist because the disease primarily effects the skin...also does the photophoresis therapy just target the skin issues or does it also affect the immune system. The dermatologist also when I was attempting to ask him who should be in charge stated that no doctors like to treat this disorder...whatever that was supposed to mean. I am greatful for whatever information you can give me... Thanks again Shennen
  24. Hi I am newly diagnosed by a rheumatologist who sent to a dermatologist and the dermatologist has suggested photophoresis therapy. I was wondering if anyone has heard of this or has even had it done and what their outcome was
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