Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Tim: welcome to the group! We look forward to hearing from you again. on 2/12/2004 7:19 AM, slitherboy_uk at slitherboy_uk@... wrote: > Hi Folks, > > I'm new to the group so I just thought I'd post an initial message > just to say " hi " . Have some questions about doing CR, or rather > about having started it - but probably in the wrong way (and with > concerns about potential consequences and what I can/should now do > about it for the best). Like I say I'm pretty new to all this, so I > hope you won't find my questions and concerns annoying. Hope we can > all be of assistance to each other. Later. > > Cheers, > > Tim. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2007 Report Share Posted December 14, 2007 Welcome to the group, Robin. I'll share my asthma experience with you if it helps you deal with yours. I was hit the IGE test at around 330. I've been on the max dose of Xolair for about 1-1/2 years. I take that along with Advair 250, Uniphyl 300 (that's a low dose) and Zrytec which controls the sneezing. 1-2 puffs of albuterol maybe once or twice a month. When my peak flow drops below about 90% of normal, every few months, I up the Advair to 500 for a couple of weeks. Thats a lot of medicine but I generally feel asthma-free. It used to take a course of predisone to temporarily put me in the state of good breathing that I now enjoy routinely without that steroid. I've not had, or wanted, any predisone for six months. The really great thing is now I can suck fresh air deep into my lungs like never before and I've been building up my physical health from outdoor exercise. At 61 they say I'm no spring chicken, but I feel like one when I get out in the fresh air. I'm leading a normal productive life when a couple years ago I had slipped into a severe sedentary lifestyle and the docs had me planning my obituary. The problem I see with Xolair is that it's super expensive but I'm so fortunate that my medical insurance covers it almost entirely. Ohterwise there is no way I could afford it and I'd probably be out of work and hanging out at the hospital emergency room by now. > > Hi, my name is Robin and I wanted to stop in and introduce myself. > > I was diagnosed with asthma and severe allergies three years ago. I > have been taking allergy shots for almost two years. I also take > singulair, nasonex, and histavent daily to try to control my > allergies. My asthma has been getting progressively worse despite the > best efforts of my docs and myself. After trying a variety of meds, > Advair 500 has been the only one to have any real effect on my asthma. > Even while on Advair, I am still having bad asthma attacks. Each time > I come off the prednisone, within two days I can feel my chest start > to tighten again and the problems start all over. Within two weeks I > am right back at the docs with bad asthma problems again. I have also > been having repeat sinus infections. > > I had an IgE test done last month. My results were 281. Higher than > they expected with my current treatment plan. I go back on the 20th of > this month for a breathing test with a follow up the following week. > The doc is leaning strongly to adding Xolair shots to my regimen. > First he wants to see how my Spiro test goes. The last two I had were > fine. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 Thanks for telling me your story. I'm hoping my insurance will cover a high percentage...otherwise I won't be able to afford it. I would love to go back outside and enjoy the beautiful weather with my family right now. I too have been getting very sedentary lately... Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2007 Report Share Posted December 16, 2007 Welcome, Robin! Please keep us posted on how you are doing and if you decide to take Xolair. Most of us have benefitted greatly. We've only had a handful of people (no more than 6) who've not benefitted and decided to continue and only a couple with side effects severe enough that they decided to continue. As for me, Xolair has given me my life back. Addy Group co-owner > > Hi, my name is Robin and I wanted to stop in and introduce myself. > > I was diagnosed with asthma and severe allergies three years ago. I > have been taking allergy shots for almost two years. I also take > singulair, nasonex, and histavent daily to try to control my > allergies. My asthma has been getting progressively worse despite the > best efforts of my docs and myself. After trying a variety of meds, > Advair 500 has been the only one to have any real effect on my asthma. > Even while on Advair, I am still having bad asthma attacks. Each time > I come off the prednisone, within two days I can feel my chest start > to tighten again and the problems start all over. Within two weeks I > am right back at the docs with bad asthma problems again. I have also > been having repeat sinus infections. > > I had an IgE test done last month. My results were 281. Higher than > they expected with my current treatment plan. I go back on the 20th of > this month for a breathing test with a follow up the following week. > The doc is leaning strongly to adding Xolair shots to my regimen. > First he wants to see how my Spiro test goes. The last two I had were > fine. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 WELCOME to the group! Please let us know how things go for you! Addy Group co-owner > > > > > Greetings, Just discovered this group. After a prolonged struggle with > insurance, and many attempts at various other interesting but unsuccessful > therapies, I get my first hit of xolair day after tomorrow. I am very > excited at the thought of getting off prednisone. I¹m glad this group > exists‹very helpful and supportive. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Hi Steve, welcome to the group, they have helped me tremendously. I just had shot #3. jean ---- steven miller <smiller@...> wrote: > > > > Greetings, Just discovered this group. After a prolonged struggle with > insurance, and many attempts at various other interesting but unsuccessful > therapies, I get my first hit of xolair day after tomorrow. I am very > excited at the thought of getting off prednisone. I¹m glad this group > exists‹very helpful and supportive. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Welcome to the group. Xolair has helped me and I have been on a low dose for two years.  Adah From: steven miller <smiller@...> Subject: [ ] New to group Date: Tuesday, July 22, 2008, 10:13 PM Greetings, Just discovered this group. After a prolonged struggle with insurance, and many attempts at various other interesting but unsuccessful therapies, I get my first hit of xolair day after tomorrow. I am very excited at the thought of getting off prednisone. I¹m glad this group exists‹very helpful and supportive. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2008 Report Share Posted October 10, 2008 Hi everyone I am new to this group so thought I would say hi. I was diagnosed 12 months ago and haven't coped very well. Before I was diagnosed, I was a fit 37 year old so it hit me quite hard. The rheumy I have been going to has not really given me much info so I have been absolutely terrified. I am going to a new one on Monday - hooray. The pain seems to get worse over time - each flare a little worse than the last - particularly when stressed. Does the disease get worse or are there no real levels of disease? You either have it or you don't? Sorry for the silly question, this is all a bit new to me. I take mtx, plaquenil, arava, sulphasalazine, folate. It seems everyone is on injections. Am I behind the times? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2008 Report Share Posted October 11, 2008 Welcome to the group. You have several items and I will try to hit them all. If I don’t, please let me know and I will try again. RA is extremely variable from quite mild to very severe. Mild cases are treated with mild medications while more severe cases require stronger and more expensive medications. You are on fairly strong medications but as you mentioned injections or infusions (called biologics) are likely to be the next step. The first four medications you mentioned are called DMARDs (Disease Modifying Anti-Rheumatic Drugs) while the last one is to counteract some side effects of Methotrexate. Because of expense, most insurance companies will not support biologics unless the patient demonstrates that less expensive medications are not adequate. Based on time and current medications I think you are likely to be approved for a biologic, but even with most insurance they still are expensive. Also it depends on how long you have been on the less expensive medications because most RA treatments require several months to show whether or not they are effective. Within about two years most people find a way to reach a new normal and stabilize the disease. A few go back to how they were before RA but most have some limitations even with medications. However, very few do not get any relief at all. The link below is to an English booklet that I think gives an accurate and readable picture of RA. There may be minor terminology differences but it is helpful to most newbies. http://www.arc.org.uk/about_arth/booklets/6033/6033.htm I don’t know how limited you are because of RA but if it keeps you from doing things you really need to do (rather than limiting what you only want to do) you might consider Prednisone. This doesn’t do much to slow damage from RA like a DMARD does but it usually gives quick relief from many symptoms of RA. It is a corticosteroid and also does many bad things to us, especially when taken at high doses for long times. I started at 40 mg daily to permit me to struggle from bed to the bathroom and it took me about a year and a half to get the right medications and doses to finally get off it. However, it let me function marginally at least till I got the right treatment. I think your current treatment is not unreasonable but I’m sorry that your rheumatologist is not more communicative. I hope we can help with that here. God bless. From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of cheryl.dines Sent: Friday, October 10, 2008 4:05 AM Rheumatoid Arthritis Subject: New to group Hi everyone I am new to this group so thought I would say hi. I was diagnosed 12 months ago and haven't coped very well. Before I was diagnosed, I was a fit 37 year old so it hit me quite hard. The rheumy I have been going to has not really given me much info so I have been absolutely terrified. I am going to a new one on Monday - hooray. The pain seems to get worse over time - each flare a little worse than the last - particularly when stressed. Does the disease get worse or are there no real levels of disease? You either have it or you don't? Sorry for the silly question, this is all a bit new to me. I take mtx, plaquenil, arava, sulphasalazine, folate. It seems everyone is on injections. Am I behind the times? No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.173 / Virus Database: 270.8.0/1720 - Release Date: 10/11/2008 3:59 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2008 Report Share Posted October 12, 2008 I'm on methotrexate, prednisone, naproxen, folic acid - no insurance, can't afford the injections Helen From: cheryl.dines <cheryl.dines@...>Subject: New to groupRheumatoid Arthritis Date: Friday, October 10, 2008, 7:05 AM Hi everyoneI am new to this group so thought I would say hi. I was diagnosed 12 months ago and haven't coped very well. Before I was diagnosed, I was a fit 37 year old so it hit me quite hard. The rheumy I have been going to has not really given me much info so I have been absolutely terrified. I am going to a new one on Monday - hooray. The pain seems to get worse over time - each flare a little worse than the last - particularly when stressed. Does the disease get worse or are there no real levels of disease? You either have it or you don't? Sorry for the silly question, this is all a bit new to me. I take mtx, plaquenil, arava, sulphasalazine, folate. It seems everyone is on injections. Am I behind the times? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2008 Report Share Posted October 12, 2008 Dear Cheryl- You should start thinking about applying for SSDI or social security disability. This will pay for a biologic medication that should address your disease as aggressively as its addressing you with flares. Remicade by infusion intereferes with the cellular chain that causes your flares. Medicare approves this drug and it is given by IV. Other biologics are injectibles. Humira and Enbrel. There is also a B-Cell blocker called Rituxan. You can find out about all those on the arthritis foundation website. There are chapters with support meetings in every major city. www.arthritisfoundation.org Remember that pain triggers chemicals in your brain that leave you feeling depressed and desperate and afraid. Get to a chronic pain councelor or licensed therapist to help you cope. Denial is a common reaction. I was deep in mine for the first few months but because of the Arthritis foundation I found people who had had it for years as well as specialists in Rheumatology that were essential to my knowledge of the disease and my path to wellness. I have been a support group leader in the past and am happy to help you via email any time. Yours, Deborah. RA since 1994. Remember to be an advocate for yourself. Fight for the best care. I am on my 23rd Rheumatologist because I wouldnt take no or inadequate care. I research everything and know as much or more than the doctors do. Find out the how and why of the disease. I have been on Remicade since 2000 with very good results. On Fri, Oct 10, 2008 at 8:05 AM, cheryl.dines <cheryl.dines@...> wrote: Hi everyone I am new to this group so thought I would say hi. I was diagnosed 12 months ago and haven't coped very well. Before I was diagnosed, I was a fit 37 year old so it hit me quite hard. The rheumy I have been going to has not really given me much info so I have been absolutely terrified. I am going to a new one on Monday - hooray. The pain seems to get worse over time - each flare a little worse than the last - particularly when stressed. Does the disease get worse or are there no real levels of disease? You either have it or you don't? Sorry for the silly question, this is all a bit new to me. I take mtx, plaquenil, arava, sulphasalazine, folate. It seems everyone is on injections. Am I behind the times? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2008 Report Share Posted October 12, 2008 There is drug assistance for those without insurance. I would look into that. If you go to arthritis.org its the arthritis foundations site you can look at all the drug assistance companies. You may qualify to get your meds free or at a low fixed co-pay. I don't have insurance and that is what I am doing. I also use pharmacies that have the low cost generic drug programs. We have quite a few where I live and they offer anywhere from $4-5 a month for generics as well as many offer from $9-20 for three month supply of generics. ToniNew MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News more. Try it out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2010 Report Share Posted December 11, 2010 Hi Bruce, First ... Welcome to the group. I am not overly active but have found there to be a lot of good info here. I have been on Xolair since January 2009. I was one of the lucky ones who gained improvement almost immediately. It has made a world of difference for me. I was in the ER about 1x per month, now I go about 2x per year. Instead of allergies, my attacks are triggered by colds/bronchitis. More immediately, the cancer can be quite scary. My older brother (54yo) just had a kidney removed due to an apple sized tumor. His was totally encapsulated and he returned to work about 2 weeks post op. He has had some periods of being very tired, but that passed after about another 2 weeks. He's had no radiation nor chemo. I pray that yours goes just as well. Do let us know how you fare. Mike McBride (Kenai, ALaska) Like the apple of Thine eye preserve me, O Lord God; defend me and beneath Thy wings shelter me from temptations. St. Ephraim the Syrian ________________________________ From: Bruce <bjenkcool@...> Sent: Sat, December 11, 2010 7:25:37 AM Subject: [ ] New to Group Hello to all members I am to go into the hospital this Wednesday for a kidney removal (cancer). I will be starting Xolair treatments in January 2011. Do you think this will be too soon after surgery? What side effects can I expect? I am so glad that this group is available. Thank you in advance for all your support. Bruce Virginia Beach, VA Quote Link to comment Share on other sites More sharing options...
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