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Lauriejill

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About Lauriejill

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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 for my rheumatologist said it takes several months after you are finished with the treatment to feel really better. It worked for me and breathing is a great thing!!! I really hated the idea of having "chemo" (I still take methotrexate shots weekly) and worried about the side effects and the stigma and the feeling that I am sicker than I want to be ..... I was soooo tired......but endurance paid off for me so I am sharing the experience of having gone through it with positive results. Hope this helps. Lauriejill
  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 of resting pulmonary hypotension but was still able to qualify for the trial.....so I went into the next room for a bronchoalveolar lavage (BAL). I was given the usual "conscious sedation" drugsl but this was NOT pleasant as I became conscious of my surroundings and what was happening.....thought I couldn't breathe with the tube in my lungs and the fluid! I got pretty scared and tried to pull the tube out......I think they gave me some more meds because I dont remember much after that. I signed the consent papers for the trial and I will be one of 10 participating at UCLA. I will be given the starting dose of Gleevec on Friday when I return to UCLA for a physical and a 6 min walk test. Gleevec is a drug currently in use for certain types of leukemia and a rare stomach cancer. It works in a specific way and with a certain protein that causes fibrosis in the lungs (although skin should be helped as well). They have high hopes for this drug in scleroderma and it has less side effects and adverse effects than a drug like cyclophosphamide. The trial is for a year and I will be closely monitored with clinical visits and blood tests. I believe that Dr. Furst and the clinical trial coordinator have my best interests in mind and if there is any indication of worsening I will be advised . I know clinical trials can be risky but I feel that currently there is no really good drug available anyway so why not try to help myself and others by going into some unknown territory......... I will keep everyone advised of my progress....wish me luck....could be good for all of us! Lauriejill
  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 to deal with all of that negative energy. I agree that you should tell those closest to you and your loved ones at appropriate and easy times when you can have a REAL conversation.... and then have them tell others as they see fit. I wish everyone were supportive and understanding of what we have to go through but the truth of it is that there are those who will never understand or have "small minds" or their own problems of thinking ....you probably know what I mean. Keep smiling..... Lauriejill
  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 some reason the MD's are very optimistic about the science involved having to do with a certain protein (tyrosine) etc. etc. The trial is for a year and the medication will be taken orally started at a low dosage and then slowly upped. I will have blood tests every 2 weeks and a clinic visit, PFT, etc. every three months. The drug and blood tests will be covered by the drug manufacturer and I will be monitored very closely. My primary care physician told me that he has had other patients on Gleevec for the above mentioned cancers and they have all done very well on it with limited side effects. So....I think I am going to go for it as my other option is cyclophosphamide (booo) or other drugs that have only been marginally successful.....(?) Just thought I'd share ......happy to hear any feedback. Lauriejill
  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 cymbalta should help with that too..... I also take advil for the fibro pain which always gets worse when I am under stress. Exercise is recommended and a hot tub would be fabulous!!!!!! Hope this helps. Lauriejill
  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-fibrotic and is doing very well for patients but not approved yet by the FDA. I am trying to find out if there are any trials for scleroderma patients....all I have found are for idiopathic lung fibrosis. I will be sending my recent PFT and echocard. to Dr. Furst at UCLA as he is my scleroderma specialist/advisor. But no one likes to hear the words "getting worse" ...."cyclophosphamide" ....so scary to me and it helps to hear from others who have advice and experience. Thanks for your replies. I will ask about cellcept too ...... To be honest, I just don't know how to feel about all of this ..... a bit shell-shocked, some denial....what is up ahead?? questions that just cannot be answered.......and sadness. Thanks Lauriejill
  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/month....soooo....I won't be taking that one! I am waiting for my MD to try to get it through the insurance company but when they are "off label" usages it may be a battle. I have read on this forum many people who use Cialis or Viagara for their raynauds.....and it works well for them. Lauriejill
  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 without it! Hope you get the help you need! Lauriejill
  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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