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Everything posted by Gidget

  1. Snowbird, It is my understanding that drugs like Nexium control the production of acid while tablets such as Tums neutralize the acid. I had severe acid reflux and I could not get it under control with any of the medication. I basically have little/no esophogus motility. My flap separating the esophogus and stomach was completely gone as a result of the acid having eaten it away. Ultimately, I had fundoplication surgery which helped dramatically. The surgery is such that the esophogus is stretched and wrapped around the stomach to make it difficult for the acid to come up into the esophogus. All the sclero doctors that I saw recommended that I NOT have this surgery done. The best I got was that even if it worked that it would only last 2 years as my esophogus would continue to deteriorate due to the sclero disease. In any event, I took the leap of faith and had the surgery done. It has been the best thing for me. My acid reflux is not bad at all and I pretty much eat everything. I just need to drink alot of liquid when I eat items such as bread in order to push the bread down. If this is something that people want to consider, my only advice is to have it done by a surgeon that does lots of them and one who is very familiar with sclero patients. The surgeon who did my procedure was great and I appreciate the fact that he was willing to adjust the surgery he performed based on how flexible he found my esophogus as he was aware that with sclero patients you don't really know how rigid the esophogus will be. If you reach the point that you can't manage the acid reflux no matter how many Nexiums you take, then this might be an option for you. Good Luck.
  2. Kelli, When I was initially diagnosed, my white cell count was 14. The normal range is between 4 and 10. At the time I was given IV cyclophosphamide and the drug drove my white cell count down to 6 but the doctors wanted it down more- to below 4. As such, the cyclophosphamide dosage was increased for the last 3 treatments and my white cell count hit just below 4 by the end of the last dosage. I have since then used my white cell count as an indicator of how active my disease is. My count went from the 4 to over 10 within 9 months and I seemed to be heading higher. At that time, I decided to enroll in a clinical trial with the drug Gleevec. Since taking Gleevec, my white count has come down to a 7 level. In all cases my neutriphils have been fine. As such, I keep close watch on my white cells as I know that during the cyclophosphamide dosages it is what my rheumatologist watched. Good luck. Gidget
  3. jackie, Just an FYI -- I have sclero and my esophogus does not work at all and the flap at the stomach is gone. As a result of all this my acid reflux is horrible and sometimes not under control. My GI doctor recently had a probe inserted into my GI tract which recorded my acidity over a 48 hour period to an external device and the record will be reviewed. The thought is that if my stomach acid is very bad that I will need some sort of stomach reduction in order to produce less acid. I am assuming this would be some sort of lap band procedure. The concern is that I am in danger of developing Barrett's syndrome which can lead to cancer. The GI doctor that I see treats several sclero patients and is familiar with the disease. As such, I believe that the procedure can be tolerated by sclero patients. Hope this info helps a little bit. Good luck. Gidget
  4. Barefut, Here is a suggestion -- Submit paperwork requesting FMLA (Family Medical Leave). Then for the 2 hours that you leave early each day, have it charged to FMLA. On the days you choose to not leave early, then your time would not need to be charged. Of course, the reason you are leaving 2 hours early is to take care of yourself -- don't say you need it to manage the household. I believe you are entitled by federal law to 8 weeks of FMLA leave every two years. In some states ie. Connecticut, you can take up to 16 weeks of FMLA leave. Your HR dept can give you this info or you can find it out by googling it for your state. The important thing to note, is that FMLA offers job security in that your employer cannot lay your off or should not lay you off while you are on FMLA. Hope this suggestion helps. I have a friend that uses FMLA to take her mom to dr's apptmts, etc.. and she uses it by the hour but then again, this is in CT where the rules or the corporation are more flexible. Good Luck. Gidget
  5. Raechel, I am so sorry to hear about your daughter. You must be frantic! My suggestion is that you get with a sclero specialist as soon as possible. There are only a handful throughout the country but I think they are all very good. My personal experience has been positive with Wigley out of Johns Hopkins; Medsger out of Pittsburgh and Varga out of Northwestern, Chicago. You can also try Spiera out of NYC if that is closer. In any event, what you will want is to develop a team of doctors -- you need the sclero expert; you need a local rheumatologist to support the sclero expert; and you need your local pediatrician to also be part of the team. Depending on your daughters issues, you will need to add a local Gastric guy or a local Lung doctor -- probably ones that do peds. Basically, you will need a local team that understands the sclero issue. Do not be afraid to seek out the best medical attention that you can get. A great team of doctors will make all the difference in the world. Based on your posting, I think you need to move away from the doctor that is saying weight is the problem. Yes, the weight is the problem if your daughters issue is her lungs but it is how you eat that can help/hurt the gastro issues -- not her weight. I always feel that doctors that right away focus on weight just are not that sharp. Now, a lung doctor told me that you want to be as fit as possible as the fitter your body is, the better it utilizes oxygen -- now that makes sense -- not you need to lose weight. Good luck. Gidget.
  6. Margaret, My rheumatologist told me NOT to get the H1N1 vaccine as there is no way to tell how someone with an autoimmune disorder will react to it as it is so new. In the meantime, a sanitization gel is my new best friend. I do not plan to get the flu, pneumonia or H1N1 vaccines as I believe that I got sclero from the Hepatitis or Typhoid vaccines. Can't prove that these vaccines caused sclero but within 8 months of the vaccine, I had it. I am also holding off on my daughters Guardasil and spinelmengitus vaccines until I see what happens with the H1N1 as there is no reason to weaken her system in time for the H1N1 season. Excuse my poor spelling. Good luck. Gidget.
  7. Hi Deb, I am not sure if you are on the oral or IV cytoxan. I did 6 monthly doses of the IV cytoxan and here are is what I think helps. First drink lots of water -- you want to flush the drug out of your system. By lots of water, I mean an 8oz glass every 2 hours. And try to do this for most of the month. I used to do it for 2 weeks and then got lazy the last 2 weeks. The other thing is to make sure you do absolutely Nothing the day of the treatment and the day after. If you do this, by the 2nd day you will start to feel better. If you don't, then the cytoxan will knock you on your butt for most of the month. That is why most people schedule the treatment for Friday, so they have the weekend to do nothing and are feeling better by Monday. Once, I had the cytoxan and then caught a plane the following day for a doctors appointment and I just could not get my energy back up again for the whole month. So, I think it is very important to get your treatment and then plan to lay around the house literally for the next 2 days. It will make a big difference if you just take this little bit of time. In any event, I liked being on the cytoxan once I knew how to use it. It will make your skin softer and your breathing will feel better -- I mean, you can take a deep breath and it won't hurt. I wanted to stay on it in quarterly doses but nobody would Rx it. I am happy that you have found a specialist even if you need to travel. I fly lots of places to see specialists that I am happy with. Good luck. Gidget
  8. tonya, I have seen Dr. Medsger (Pittsburgh) and Dr. Wigley (Baltimore). I decided to see Dr. Wigley as he likes to RX cellcept while Dr. Medsger does not. At the time of my decision, Cellcept was the "new" drug. Both doctors are very capable. I have also heard good things about Birdman's Dr. Shanahan. I use Dr. Wigley to RX drugs/treatments, however, as I live in Florida -- the Mayo Clinic performs the treatments. When I was in CT, my CT rheumatologist would have the treatments done in CT. It is important that no matter who you decide on, that you have an excellent rheumatologist near where you live. Not only will they be helpful should you need them, but they can be an invaluable sounding board when trying to plan out different treatments. In most cases, I think your local rheumatologist will be happy to have you as a patient as it will give him/her and opportunity as to what the sclero specialists are doing and they can see first hand what works or does not. And they get the additional benefit of not having to be responsible for treating you. Good luck. Gidget
  9. Ani, I have been on Gleevec for over a year now. I initially received the drug as part of a clinical trial out of NYC with Hospital of Special Surgery. I am now in the follow up trial. The clinical trial is getting ready to publish their results for October and the doctors have told me unofficially that the drug has been promising. As I have lung issues and some skin hardening, my main hope was that it would work effectively for my lungs. After a year of the drug, my skin score went from a 21 to an 11 -- so I think it worked marvelously for that. As far as my lungs -- well they have remained relatively the same although they have drifted slightly downward in the year. What I have heard from the clinical trial is that of the 10 that completed the trial almost all the participants lung function remained the same and that a 2 of the participants had a significant improvement in their lung function. As a side note, the Mayo Clinic in MN did a study on Gleevec for pulmunary fibrosis on 400 patients and the results of their study showed "no significant change in lung function". When I brought this up to the clinical trial doctors in NYC, they indicated that they felt that the pulmunary fibrosis was caused by sclero and therefore it was not the same study. As far as side effects for Gleevec -- I had alot of nauseau initially and felt very worn out -- so I started to taking the dosage throughout the day on a full stomach and that help quite a lot. Also, while on Gleevec, I have less joint pain and I feel less arthritic. It takes a few months for your body to get use to Gleevec. I initially did not feel good on the drug. My only other comment is that the drug here in the USA runs about $3000-$4000 per month -- hence the reason I continue in the clinical study as there is no way any insurance company will cover this drug,. Also, some others have tried the clinical trial and had very poor luck with Gleevec in that it made them very sick. I think if you search Gleevec on the forum you will see some other experiences. Good luck. Let me know if you have any questions. Gidget.
  10. Alex, When I travel, I take anticeptic wipes and when I get on the airplane, I wipe down everything that I will touch -- the arm rests; the tray, the seat belt clips, etc.. While in the airports, trains, subways, etc.. I always carry a little bottle of germ killer and am constantly using it numerous times a day. Like you, I am very concerned about the swine flu. Should we have an epidemic, I expect to begin wearing a mask. Also, I try to wipe down grocery carts too. In general, I try to not shake hands. I think the best we can do is think about it and try to keep our hands clean. When I was on a flight from Orlando to NYC, the person sitting next to me got sick on the plane with projectile vomiting. I thought I was going to jump out of my skin!! I jumped out of my seat and ran to the next available one and practically launched myself into someone's lap to get away. I could not get off that plane fast enough! I did ask my rheumatologist if I should get the vaccine when it is available -- he said no. That the vaccine itself is 2 shots and he is afraid that it will further trigger my autoimmune system. He said that this has been a problem with previous type vaccines. good luck. gidget
  11. Eddie, Used to live in Connecticut and moved to Northeast Florida. I have sclero with lung involvement and Raynaud's. The change in weather helped me in the following areas: - Warmer weather improved circulation. Less sores on my fingers. - Slower lifestyle eliminated stress - Humidity was good for my very very dry skin. - Good weather all year which means that I can walk all year which has been good for my overall fitness. In CT, during the winters I would be curled up on the couch which kept me stiff and sore. I believe that my change in lifestyle and environment has had a huge impact on me and my quality of life. Good luck. Gidget
  12. Barefut, What is the name of the generic? Thanks. Gidget
  13. Angie, I also have just become eligible Medicare and the prescriptions plans and here is what I have found. 1 - Contact your state insurance department to find out what medicare supplement programs are eligible to you. This is especially important if you are under 65 as not all medicare plans are available to you. For example, in Florida there are no medicare supplemental plans available as I am under 65 and disabled. In Connecticut, I can purchase Plan A, B and C. These are the only plans that can be sold to me. I believe each state is different. Also, keep in mind that Medicare covers stem cell transplant -- so when you go to a medicare advantage program, I think that it is the advantage program that now pays for your coverage and you are not using the medicare program. For me, I want to make sure I am in Medicare and don't want to muddy the situation with the advantage program. 2 - As I see doctors in many different states, it is best if I get the medicare supplement and NOT a medicare advantage plan. With a medicare supplement, if the doctor accepts medicare, then they have to accept the supplement as it works in all states. Under the medicare advantage plan, it is only good for doctors in their network as then you have out of network requirements which from what I can see, means limited coverage for those of us under 65 and disabled. 3 - For the prescription plans, I am going to the cheapest plan as most of my drugs are generic and I will get from a local pharmacy, etc.. I set up my drug list, and for me the only drug that has been problematic is the Nexium -- so I am looking for an plan that rates it as a Tier 1 drug; does not need prior authorization; does not need step therapy and and does not limit the quantity. Any of the immunosuppresent drugs will need prior authorization from what I can tell, but for me getting Nexium has been my battle with the insurance company. Also, if you are under 65 and disabled, keep in mind your deadline to pick something. You only have a 3 month window and not the 6 month window that you would have if you are 65. For the prescription coverage amounts the $2700 and the no gap up to $4300, these amounts reset every calendar year (Jan1). Also, I think you can switch in and out of the Plan D program each fall if you do not like your current provider. Good luck. Gidget
  14. Birdman, I am sorry to hear that your lungs are not holding. Mine continue to drift downward slowly. Yes, I did the IV cytoxan. Yes - I tried the Cellcept -- couldn't handle it -- it made me bleed. Yes - I have had a RX for Imuran but decided not to take it. Instead I did the clinical trial for Gleevec (leukemia drug) and I took Gleevec for a year. MY PFTs remained the same or slightly better year over year and my skin did great. I think I went from a skin score of 21 to 10/11. Also, the skin biopsy showed an improvement year over year. I am now trying to get into a follow up study. I am not sure if all the Gleevec clinical trials have a follow up study but the study at Hospital for Special Surgery in NYC has a 2 year follow up where you can get the drug (Gleevec) for another 2 years after you end the trial. Which is great as it normally costs $5,000 a month for the drug if you don't have insurance or can't get insurance to cover it. Johns Hopkins will prescribe it and work to get insurance coverage. On a separate note, Mayo clinic studied Gleevec for lung fibrosis and did not get a "statistically significant" result but the doctors. at HSS say that is because they did not test it on sclero people and they (HSS) are seeing the PFTs either stay the same; slightly improve; or improve quite a bit (unusual but true). During the gap period, I have also taken Colchizine which is a gout medicine. Pretty much every rheumatologist doctor will tell you it does not work but the lung transplant doctor told me that he gives the drug to people waiting for the lung transplant and sometimes it works for their fibrosis and sometimes it doesn't. He has no idea why or on who it works. But it is a great drug as you don't even know you are taking it. Personally, if I were you, I would not take it as it seems like your disease is very active but for me, I like it as it made me feel like I was doing something during my gap period. Best of luck with everyting. REgards, Gidget
  15. My ear lobes have shrunk as well. Gidget
  16. Beth, Yes, you are right -- stem cell transplant is your only option and you are smart to move forward on it. I will PM you with some info regarding people that may be able to help you with your fund raising. Regards, Gidget
  17. Beth, Northwestern is a fantastic facility and Dr. Burt has much experience/success with the stem cells--just make sure you understand the risks. Like you, I went for the stem cell but could not get insurance approval. I got my state's health advocate involved and spoke with the state's attorney general. All appeals were denied. At the time it felt like a death sentance. In the meantime, I did the cytoxan treatments and changed my lifestyle completely by moving to a warm climate, not working and trying to stay active. For the most part this all worked. I also went into the Gleevec clinical trial for a year. In the end, my strategy was to try to "run out the clock" as it is my understanding that Sclero is the most active for the first 36 to 60 months. I hit the 36 month mark this month and my fingers are crossed. I now have medicare coverage which will cover stem cells. The reason that I am choosing to not have it done is that I think I am relatively stable although my PFTs move around. Like you, I had no problem with the cytoxan -- I only had 6 dosages and I asked and asked to continue getting more -- I argued that if I couldn't have it monthly then at least let me have it quarterly -- I was convinced that I needed it to keep me stable -- I tried to get it from 3 doctors -- in the end, all 3 had the same response -- "the risk outweighs the benefits". Their recommendations were Cellcept/Immuran/Gleevec. So, this is the part I can't get my arms around. Basically the cytoxan I was asking for was a "thimblefull" compared with what is given for the stem cell. So, if 3 doctors won't give me a thimblefull of cytoxan because the "risk outweighs the benefits" -- then how can it be OK to get an ablative dose of cytoxan. When I asked this question, I was told it is a "different procedure in that it is necessary to do for the SCT". I recently went to Northwestern again to find out how bad my PFT needs to be before they will NOT perform the stem cell. Basically, the DLCO can be at 14% and they still will do the stem cell. The issue is the heart. Your heart needs to be in tip top shape. My DLCO is at 50% -- so I figure I still have time. Basically my take is that I can be dragging an oxygen tank and as long as my heart is good -- I can have the procedure done. So, I am again opting to wait and try to "run out the clock" until the disease peaks if it hasn't already. I wish you the best. Had the cytoxan not been able to control the lung progression, I would have had the stem cell -- and paid out of pocket. It sounds like you are at the 3 year mark and may be at the disease peak as I count my 3 year mark as when I got the acid reflux as I had the Raynaud's for 2 years before the acid reflux and the exhaustion started. I would guess that while you are raising funds, you will see if your lungs are stabilized or not. And I am assuming that Dr. Varga is recommending the stem cell transplant for you as he is the rheumatologist paired with Dr. Barr. Good Luck. You will be in good hands at Northwestern. Gidget
  18. Hi Shirl, I just finished a clinical trial where I was taking 400mg of Gleevec. It did wonders for the skin. According to the study, my skin score went from a 21 to 10 in a year. I think throughout the year, my PFTs went up and down, however for the study purposes, my PFT at the end of the study was the same or slightly better than at the beginning of the study -- so from the study perspective, that was a good thing -- from my perspective, I wish it had been significantly better. The Mayo clinic in MN did a study of 400mg on Gleevec on pulmonary fibrosis. The unofficial results was that there was no statistically significant change between the participants in the study -- and I think it was a large study group. I had a hard time taking all 4 Gleevec pills at the same time as I was nauseous and a couch potato. It was much better once I split the dosage up into 200 mg at lunch and 200 mg at dinner. For now, since coming off the study, I have been on colchicine. Everyone says colchicine does not work but a lung transplant doctor told me that he has seen it work on patients waiting for a lung. He doesn't know why it works for some and not for others. For me, I like it as it is like taking nothing, i.e. no side effects, and makes me feel like I am doing something. Good Luck. Gidget
  19. Hi, I am sorry to hear about your mom. It must be very difficult for you and your family to watch her suffer. I checked the protocol for the 2 Stem Cell transplant clinical trials recruiting in the USA-- the SCOT and the Northwestern trial through the links above. The SCOT trial age cutoff is 69 and the Northwestern age cutoff is 70 years. As a side note, the typical treatment is to treat symptoms so as there is no "cure". By treating symptoms, the goal is to keep the sclero patient as comfortable as possible. Best of luck. Gidget
  20. Dave, I am SOOOO Happy for you!! Keep up the good "work". Wishing you and your family all the best. Gidget
  21. Ashu, It is my understanding that cytoxan is a treatment for those of us suffering from decreased lung capacity due to fibrosis in our lungs caused by scleroderma. In your daughters symptoms, I don't see you listing shortness of breath but maybe I missed it. Cytoxan is a very strong drug and is best administered by IV. When taking the drug it is important to drink as much water as possible to flush out the drug from your system. I have taken cytoxan and it was primarily for my lung issues not for my skin or joint issues. Good luck. I hope everything goes well for your daughter. Gidget.
  22. Hi Peggy, I am glad you had a positive doctors appointment. I am sure you are relieved as well. Just one quick question: Why do they think you will develop lymphoma -- or did I just misunderstand your post? Is it because of the cytoxan? Thanks, Gidget
  23. TJ, I am not sure what your sclero issues are -- mine includes lung involvement along with GI and skin hardening. When I was denied the SCT, I was put on IV cyclophosphamide which helped stabilize the lungs. Then I went into the clinical trial for Gleevec which worked wonders for my skin and joints but did absolutely nothing for my lungs. During the time I was on Gleevec, my lungs have since become unstable which corresponds with the timing of when the cyclophosphamide results wear off. So, I am now trudging back to Northwestern to find out how bad do I have to be BEFORE they can no longer perform the SCT. Anyway, I have since come across a drug Revimmune which I am trying to find more info on. It is still in clinical testing but apparently it works similar to the SCT and consists of a 4 days of infusions where the patient recovers at home while the immune system reconstitues itself over a 2-3 week period. Apparently the drug can search out the defective stem cells while sparing the stem cells in the bone marrow. Something like this may be an option for you. I also live in FL and go to the Mayo clinic in Jacksonville for my local care. They have been very supportive. Good luck. Gidget
  24. Danielles Mom, Was that Anthem BCBS of MN that finally approved the SCT procedure? Thanks. Gidget
  25. TJ, As far as I know, the following insurance companies cover stem cell transplant. 1-Medicare 2-United Healthcare 3-BCBS of Florida (only one case - won on appeal by Northwestern) None of the BCBS New England companies cover stem cell ie BCBS of Connecticut, New York, etc.. Some individuals have been lucky enough that their company wrote a separate policy to cover the stem cell, however that does nothing for the appeal process as it does not set a precedence of prior insurance coverage. Basically, if the insurance company covered the procedurer in the past -- then they need to cover it now for you. If you are denied on appeal, you should contact your state's attorney general's office to see if the state's health insurance laws can "force" coverage. For example, in CT, I was denied and contacted my state's attorney general office where I was informed that since my company used BCBS as an administrator for a self funded plan, that the state could not force coverage for the SCT as self funded plans run "outside" of CT insurance laws. Had the plan been a "fully funded" plan, the attorney general's office could have forced BCBS of CT to cover the SCT. Unfortunately, most plans are written to "exclude experimental treatments" regardless or not as to if they are a "medical necessity". This is the problem -- the exclusion is not written to say "exclude experimental treatments EXCEPT when deemed a medical necessity". I have tried to get HR depts to change this wording with NO success as with this wording you would be able to get the SCT coverage. As far as the appeal, and your doctor will know this -- the insurance company should be using a licensed rheumatologist preferably one that specializes in sclero or autoimmune diseases. It is important that their "expert" is truly and expert and knowledgeable about the sclero condition. As a side note, Northwestern handled my appeals. They did an excellent job, however, in the end I was denied with the only option of paying for it out-of-pocket. The problem with this is that should you have complications, the procedure can cost much more than you anticipated -- and your insurance company will cover none of it -- and try to relate any future coverage for any ache or pain back to the SCT so effectively, you will not have insurance coverage without a battle for each expense. Good luck. Gidget.
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