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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
@fransav .. do you have a first name .. more personal. Oh @fransav, this must be just awful for you! PLEASE have your Infectious Disease doctor CALL and work WITH your doctor for your psoriatic arthritis! You CANNOT live with unbearable pain AND going on the meds without the two doctors working in tandem .. OR getting to a MAJOR medical facility that can help you work this out. From my File Cabinet two that you might consider are:
MAYO CONTACT INFO If you would like to seek help from Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63
** Minnesota campus for an appointment, here's the number: 507-538-3270
They will discuss your medical history with you and match you to a specialist suited to your situation. They can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. For billing and insurance information you can call Patient Account Services at 800-660-4582, or click on this link: http://mayocl.in/2hpba1s
or JEWISH NATIONAL HEALTH https://www.nationaljewish.org/treatment-programs/directory/ntm
Member @128128terry11t, Q National Jewish: how long (approximately) does it take to get in once you have sent the records and the sputum sample? A I believe that once they check your insurance and make certain that all is okay, it was about 5 weeks or so for me. If your schedule is flexible, you could ask that if they have a cancellation to let you know and you might be able to get in sooner. Don't be afraid to call them and ask that question; they are extremely kind and professional. FINANCIAL You will have an excellent experience please call the number on the site to see if you financially could go to NJH......for the first 50 years of their existence....1898 til 1958 they did not charge clients..I am on Medicare....they accepted it fully....3 months after my trip....l have yet to see a bill....they have a separate person who works out the financial part of the visit prior. I know it sounds too good to be true....but it is there to help people. l beg you to contact them to check
@fransav .. I hope some of the above helps you .. I am so glad you found us! Please read the past pages of our Forum .. you will learn a great deal about your MAC disease .. remember KNOWLEDGE IS POWER .. and please keep coming back with ANY questions you might have .. we will be here for you. AND PLEASE Members .. please jump in if you have any thoughts/hints/help on "taken off my biological meds for my psoriatic arthritis. The Otezla I was given worked for 2 yrs, but isn't working anymore & my pain is unbearable" .. she really needs our help! Hugs to all! Katherine
Replies to "@fransav .. do you have a first name .. more personal. Oh @fransav, this must be..."
@fransav. I hope your visit today is productive. Also you might want to see a pain management specialist to try to get you some relief. I too have RA and bronchiectasis with MAC. I can't take the new medications because they weaken the immune system. I've given up wearing any rings because my hands swell. Every day In the morning and with supper I take two advil or one aleve. I also grab a cold can or glass jar from thr refriderator and wrap my hands around it to help with the pain and inflammation. Sometimes heat feels better and i warm a cup of water in the microwave and hold that in my hands. I use a microwave heating pad for my back and my neck. I put Topical lidocaine on my neck, back and knees. They make it sent free now. Apply with gloves or wash hands really well afterwards so it doesnt get into your eyes. So i hope this helps a little and take care.
Becky
To both @fransav & @chinasmom - recommend talking to your rheumy about low dose shots of kenalog (I get 40 mgs quarterly) - a steroid therefore immune suppressant but at a dose that doesn't exacerbate the MAC - as for Psoriatic arthritis, there's now a biologic treatment that doesn't suppress the immune system...asking your dermatologist about it.
Boomer, thanks so much .. @fransav & @chinasmom are lucky that we have a Member on our MAC Forum who has experience with RA as well as MAC .. tough to have both so nice to have a Member who can jump in with hints and help in this area! Again, thank you! Hugs to all! Katherine
@chinasmom .. Becky what GREAT common sense advice to help on a daily basis .. thank you! Each little nugget of information and help adds to our pages for not only @fransav but also for any newcomer coming to our MAC Forum scared and looking for answers .. we have become a wonderful Reference Library over time for not only MAC and Bronchiectasis .. BUT also for so many of the related issues that seem to go along with it. EACH person who has contributed hints/help/advise to these pages can be proud that they have "PLAYED it forward" to a newcomer who was just as scared as THEY were .. and can now be more serene on their journey! To each of you .. thank you for your contribution and support for taking the time! Hugs to all! Katherine
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Thank you so very much! I'm going to Pulmonary Dr on Friday, will let u know what we decide from there!