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Stacey

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About Stacey

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  1. Hi Lucy! I'm sorry to hear about all your troubles. I have Polymyositis. Before I was diagnosed the first thing that happened was not being able to lift my hands above my head. Unfortunately my original crash happened rather fast. When you go to the doctor in February make sure they check your CPK level. Normal is and where between 200. When I was diagnosed I was at 7600. So hopefully your numbers stay good :) I also think the Scleroderma causes weakness too. My Polymyositis is in remission but sometimes I get so tired and know that it isn't the Polymysoitis. Do you live where it's cold? If so, that might be a triger to your tiredness. Hope you get to feeling better!
  2. Thanks for the information. I will try to get the vaccination but do not have high hopes at this point. It's extremely hard to get. So I'll continue washing my hands and using sanitizer and **** that I don't get it. I didn't even know that I was supposed to get until a month ago. When I first got diagnosed and started treatment my doctor told me not to get it, that it wouldn't help me. So last year I didn't get it. SO I was a little surprised when he told me that it was important for me to get it. The joys of having a over active immune system :)
  3. Hi Everyone, I'm trying to be more active in the forums. Recently Prevacid became an over the counter drug and so my insurance will no longer cover the prescription. I've been taken the over the counter but it doesn't seem to do the trick like it used to. Has anyone else experienced? I know that they are only 15mgs so I've been taken 2 a day since I have been on the 30 for over a year. Could this be causing my heartburn coming back?
  4. Both of my grandmothers have Sclero and have both had to have their teeth pulled. I'm not sure if it's related to the Sclero or not. I'll have to ask.
  5. Hello all...I joined the group in November 2007 and haven't really been involved this past year. Sorry about that. I have Scleroderma with an overlap of Polymyositis. I was first diagnosed back in September 2007 and went on 60 mgs of prednizone. Fortunately I was able to taper and come off of the last year in October. This year though, I started into another flare with the Polymyositis so I had to go back on the steroids. It's been rough but I'm young and can handle it...I think. Have any of you got the H1N1 vaccination? I was told by my doctor that I need to get it but it's extremely hard to get where I live so I'm not sure if I should push the issue and make sure and get it. Well hope that everyone is doing well.
  6. I am currently on Prednizone. I have been since September of 2007. I am doing the tapering right now. Currently down to 4mg (thank goodness) Unfortunately with my exact condition I won't be completely of the roids till at least November. Like you when I was on the 60mg of prednizone I was extremely jittery and didn't sleep more than a couple hours at a time. I would be up at 1 in the morning til 3 or 4 lay back down til 6 or so then get up and go to work. I agree with getting lots of fruits and vegetables in the house for the increased appetite. It wasn't too bad once I was down below 40 mgs. Also the insomnia and jitteriness ended when I was down to about 20mg. You have my sympathy. I know it is very difficult to be on and the side effects alone are just hard to deal with. Hang in there. :)
  7. I think for me I was more likely to get Scleroderma because both of my grandmothers suffer from it also. My rheumatologist told it was more likely for me to have than not. At the time I developed Raynauds I had had a bad sinus infection and had extra stress. We put a lot of time and effort into running a Haunted Forest attraction in our area. I think the combination of those 2 is what caused me to crash so bad so fast. It's interesting to hear everyones stories. ;)
  8. I also have High Blood Pressure. At first we thought it was caused because I was on Prednizone but my doctor put me on Lisinopril and my blood pressure dropped the very next day. He said that since the Lisinopril worked for me it is most likely caused by the Scleroderma. I also am on Norvasc and a small water pill. Now my blood pressure is at a healthy level. Also one of my grandmothers who also suffers from Sclero has high blood pressure from the Slcero. She does not have Kidney involvement.
  9. Hi Lisa, I have been officially diagnosed with is since August of 2007. I had been dealing with problems with it since November 06. My first rheumatologist ran all the normal tests but didn't find anything. In April my CPK levels were normal but by the time August rolled around they were up to 8,000! It's a miracle I was able to do as much as I was. I haven't joined the Myositis group yet. Please PM me the link for it? Now that I've hit the lovely mark of 9mg of prednizone I only get to go down 1mg a month. That's if my levels stay normal. I don't have many things because of the Sclero yet either. Except for my hands have a little bit of tightening and I now have high blood pressure which my rheumatologist says is from the scelro. Other than that I haven't been affected. Both of my grandmas have Sclero also so I've seen what it has done to their lives. Were you ever on the Methotrexate? I hope everyone has a great day! Stacey
  10. I am too also on Methotrexate and it has helped a ton. I am on the shot once a week. I take it on Saturday nights so I sleep through the brunt of it. Sometimes though on Sunday I still feel like I'm going to throw up everywhere. Like everyone else has said drinking water helps out a lot. I hope you feel better!
  11. Rosa, I know exactly how you feel. I too haven't been able to have kids and 6 of my very close friends and relatives have told me that they are expecting. It's hard I know but just remember that all things happen for a reason! Stacey
  12. Hi Lisa, First off, welcome to the posts. I don't get to post on here very often but like to whenever possible. I like you have Polymyositis. Well ok my exact diagnosis is Scleroderma with an overlap of Polymyositis. I know how you feel with the prednizone moon face. Mine has finally gone away. I was originally on 60mgs a day and now am down to 9mg. I am sorry to hear that you have all of this going on. I do hope that they are able to get the right diagnosis for you! The longer it takes it seems the longer you suffer! Just know that you are not alone in all of this. Hugs Stacey :D
  13. Back in October I was rushed to the ER in an ambulance because I started having seizures. I was told by my Neurologist that if the Sclero caused the seizure it would be through another auto immune disorder like Vasculitis. They thought I had developed that but it was determined that my high blood pressure is what caused my seizures. As we all know high blood pressure runs with the territory. I do hope you are able to find out what's going on. Seizures are really scary.
  14. Karen, I wouldn't be worried about the rheumatologist thinking it was all in your head. Before I got an actual diagnosis I felt like it was all in my head but when others started noticing things I realized that it wasn't just in my head anymore. I do have Scleroderma with the overlap of Polymyositis and some of your symptoms sound a lot like mine. Don't give up. I'm sure your new rheumatologist will run the tests. If they do suspect you have Polymyositis they may order a muscle biopsy or a test called an EMG or they may order a MRI of your thigh muscles. The EMG, I'm sorry to say was one of the worst tests I ever had and I do hope that you won't have to go through that. And also they may have you get a CT scan. I do hope that they can find out what's wrong with you! Hugs, Stacey
  15. It's been a while since I posted anything on here. But to answer your question Kelsey, the reason I haven't had any kids yet is because we wanted to wait for a while after we got married and now I've been so sick. I'm currently down to 10mg of Prednizone a day and am looking forward to the day when I no longer have to be on that or the Methotrexate. Because of my seizures in October I will be on the anti seizure medication for 2 to 3 years and then if I haven't had any seizures will be able to go off of it. It has been determined the reason for the seizures is my high blood pressure at the time. When I got to the hospital it was 214/150 or something like that. (I was unconscious because of the seizures) Definitely a life changing event. I was on Plaquinil for about 2 weeks before I was diagnosed. I didn't like it and decided to go off of it because at the time we were going to plan on trying to start a family. I don't want to be on anything that can remotely affect a baby. At that time I was starting to have bad symptoms but I was managing ok for the most part. As of December 6 all of my muscle enzyme levels are normal! I was so excited when I got the results. It's been so hard to stay positive since my hospital stay but knowing now that I am on the road to recovery has been a definite highlight for me throughout the holiday season. Stacey
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