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About Lauriejill

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    Senior Bronze Member

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    Encinitas, California
  1. Helen, Long ago I was a Nuclear Med. Tech. and we did what was called "lung scans" that sound exactly like what you described. The test that I did involved breathing a radioactive gas and being imaged sitting up (if the patient could do so). There is no prep and no side effects. It has been 20 years so they may have renamed the study and do it a little differently. Just thought I would add my 2 cents. Good luck I had lowering PFT's and was put on cyclophosphamide IV once a month for 6 months and it helped my lungs. I have fibrosis. Laurie jill
  2. Hi, I completed six months of IV Cytoxan last December. I have everything you do and I have to say the Cytoxan really helped my lungs. I had developed fibrosis, my Pulmonary Function Tests were not good (down to 47% of normal) and I had shortness of breath. After the treatment my lungs sound clear, my PFT's are normal and no shortness of breath. I hated having to do the Cytoxan and put it off for several months after it was recommended.....but I have to say it was great for me. I was extremely tired during the treatments and slowly my energy has been getting better. The Nurse Practioner f
  3. Peggy, I too have systemic sclero, raynauds and sjo's....just like you. My front teeth have also started to hurt and I do have an appointment to see my dentist next week. I was originally thinking perhaps I was gritting my teeth at night as it seemed to be worse when I first woke up....? or perhaps thats just when I noticed it most before the distractions of the day. A visit to the dentist seems like a good idea! If I find out anything from my Dentist I will let you know! Lauriejill
  4. Hi everyone, I went to UCLA last friday and had my right heart cath done. This was done with no sedation just lidocaine to my neck. The catheter was placed in my jugular vein and I could watch on the x-ray screen where the catheter was going. The MD was great and made me feel confidant in his ability....said he had done 500-600 of these. For him it was like putting in an IV. I was quite anxious....DUH....and felt my heart flutter when the catheter went in. But it was over pretty fast and I just had to stay calm and not move my head. The numbers indicated that I was borderline for a diagnosis
  5. Congratulations Kelly ....have a happy wedding day. May you have a long and loving marriage. I will agree with most ...to keep Scleroderma out of your wonderful wedding day. Although I think it is wonderful to want to educate people and have them donate etc. it will be taken by your guests in so many ways that you may not recover easily from the feedback. I know most people are warm and loving and wish you the best but there may be others who just want to put you down for "force feeding" your stuff on them.......or be judgemental or be whispering behind you back and who wants t
  6. Hi everyone, I just got back from seeing Dr. Furst at UCLA and was offered to be on a new drug trial for scleroderma fibrosis (specifically lung fibrosis, alveolitis) called Gleevec (Imatinib) First I have to have a right heart cath to be sure that I DON'T have pulmonary hypertension and then I will be eligible for the study. Dr. Furst said that he is pretty excited about the potential for this to help us. The drug is presently FDA approved for a certain type of leukemia and a rare stomach cancer but has never been approved for scleroderma and no research trials have been done yet but for so
  7. Hi Karen, I have both fibro and scleroderma too. I was diagnosed with the fibro first about 8 years ago. The treatments are not the same and you will be able to read all about fibro on the link! Dr. Furst at UCLA thinks that cymbalta (an anti-depressant) is the drug of choice for fibro pain as there have been some drug studies showing it to work best. I was on 30 mg. and saw no chance in the pain so he upped it to 40mg (today) and then to possibly 60 mg. depending on how I feel. I also have sleep apnea and use a cpap to help me get a decent night's sleep. He says the cymb
  8. Tangelo, I am about to start taking cyclophosphamide could you tell me what Dr. Furst said about this particular drug...(if you can remember..lol)! Thanks so much..... Laurie jill
  9. Thanks ladies....for replying to me. I am having another CT (last one about 7 months ago) sometime soon. The PFT was the fourth I've had in the last two years each one showing a little decline from the last. My rheumatologist is pushing the cyclophosphamide, as he did a year ago when I refused to take it then.....all of my other MD's thought it was a bad idea ...but now the Pulmonary MD says it is time to start treatment as I am clearly getting worse. He called it a "moderate change". My pulmonary MD told me about an experimental drug called pirfenidone that is in clinical trials as an anti-
  10. Lisa, My son has Chiari Malformation as well .... has had it since he was 9 years old, now 30. He has had decompression surgery at UCLA 4 years ago. But he recent MRI shows that the tonsil size is the same as pre-surgery. He also complains of swallowing issues..? There is an active Chiari support group on line if you need one. Laurie jill
  11. Hello everyone, ts been a long time since I have posted but I need some help. I just found out that my PFT showed an FRC of 60% which is down from 80% a year ago. My Doctors - Pulmonary and rheumatologist say that my interstitial lung disease is moving moderately fast and needs to be treated. Cyclophosphamide (and possible prednisone) has been suggested. Does anyone have any experience with this drug and has it slowed down progress, side effects etc. Thanks so much ... I am feeling quite stunned and scared about this next step.....thanks in advance. Laurie jill
  12. Good question .... I had been taking a CCB for my raynauds for a while when I also read that they can cause weakening of the lower esophageal sphincter ..... one of the problems with GERD. I asked my MD about it and he said that there are pros and cons for each med. I have recently stopped the CCB because of untoward side effects and was prescribed Revatio, which is basically Viagara repackaged with FDA approval for pulmonary arterial hypertension. Viagara, Cialis and now this Revatio are not approved for Raynauds as far as I can tell. THe Revatio my MD ordered turned out to cost $760/mont
  13. Hello Jaxs, I have not heard anything that specifically ties CREST to sleep apnea but I HAVE heard of a connection between apnea and Fibromyalgia! I have both Crest and Fibro and I also sleep with a CPAP machine. I have found that despite my initial cringe at having to put something over my face I actually tolerate the machine very well. I believe that it really does help me and I have had several chances to prove it to myself by traveling a few times without it and then just stopping a couple of nights to see what would happen. I know now that I get better sleep with it than wit
  14. Dave, I wish for you that everyone who touches you during your procedures does so with competant and loving hands! I wish for you that everything goes the way it is intended and that your results are better than expected!!!! I wish for you the ability to remain calm when crazy things are happening to you and that you are not constantly second guessing your decisions (one of my problems!) I wish for you a quick recovery and please know that everyone here is thinking of you and wishing you the same!!!! Much love, Lauriejill
  15. Laurie, I am a Laurie too!!! And I also live in San Diego. I have been diagnosed with Scleroderma for a little over a year. I have CREST and Raynaud's and fibromyalgia. I have been to see Dr. Furst at UCLA and Dr. Medsger at the University of Pittsburgh and I have a north county rheumatologist who I think is pretty good. If you would like to speak to someone else with this disease, send me a private message and I will send you my phone number. Welcome to this forum! Lauriejill
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