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Posts (45)

Apr 11, 2017 · Sjogrens in Autoimmune Diseases

I’d be interested to know if your drs find out what is causing your fevers. I’ve had daily fevers of unknown origin for over 2 years now. If I don’t take a tylenol or aleve when it gets around 101, it’ll keep going up till I take something. Last summer one day was the highest at 103.5 I think it got. The last 3 months I have had days where I don’t have fevers. But not 100% sure as to what the difference is other than in january I started taking 2000mg of mycophenolate/ day for restrictive lung disease. Would love a path to follow that might get rid of the fevers for good.

Apr 10, 2017 · Sjogrens in Autoimmune Diseases

I had severe wrist pain and initally my reg dr thought possible carpel tunnel and I said I didn’t think so as I’d been typing on a computer for my job for almost 18 yrs, why would it show up now? So went with my gut of arthritis and when RA dr said I did not have rheumatoid arthritis but had sjogren’s and it was a shock to me. Currently I do not have pain in my hands/wrist, but also on plaquinell and down to 15mg of predisone (to relieve interstitial lung disease caused by sjogren’s). I also have a lot of eczema type spots flaring up on my hands and arms and thighs right now that I put vanicream on and after a couple of days subsides. Sorry I got off topic. I need to go back and read this forum from the start as I have lots of questions about sjogren’s.

Apr 3, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

So sorry to hear all your mom is going through. My ID dr told me I had to take all 3 antibotics/ day or don’t take any (like if I had a procedure). Yet in October (my MAC cultures were clear) when we discovered the ethambutol was giving me a rash, they had me stop that drug and keep going with rifampin and azythromycin (sp?). They told me that the MAC was so slow growing they were okay waiting for a month or two. I’m guessing this was because my cultures were negative. They sent me to an allergist to see if I could be desentatize to ethambutol, which I was able to be and went back on it jan 30th, along with the oyher 2 drugs I never stopped. When I saw an ID dr at mayo he said there were other drugs to be tried if I couldn’t be desentatized, but he didn’t indicate if it was drug for drug or the whole treatment of drugs together. Hope someone else has a better answer for you. One thing I would say is to call the dr back that you have an appt with in july and see if you can be put on a cancel list. Never hurts to ask! Best wishes.

Mar 21, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Being dehydrated can cause headaches. Drink lots of water all day long 🙂  hope you don’t have headaches again.I’ve had acid reflux since probably 2008 or 2009 when I was diagnosed.  I was in the hospital for an outpatient procedure and the nurse in my recovery asked if I’d ever been checked for reflux because of my constant clearing if my throat.  I said no and she said she would get it checked out.  I finally did as I was having issues swallowing too and my reflux was so bad it made my esophagus brittle, found during a procedure to put a balloon in to expand my esophagus  (which didn’t happen when the dr saw how brittle it was).  I was put on reflux meds and my esophagus recovered.  I’ve had an endscope as recently as last year and with acid reflux meds it looks good.  However there has been some question of sclurrederma (sp?) From my 2nd high res ct scan, but I haven’t followed up yet on that, since it was just checked last summer.I have so many things going on it’s always interesting to me to see how things are intertwined for me personally, as I have no clue which ‘came first’.

Mar 21, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I did not have headaches that I recall from the meds.  Before and while on the antibotics I  did however take 2 extra strength tylenol almost daily for unexplained fevers.  I now am able to take 1 aleve (Naproxen I believe) for my fevers instead of the tylenol  (and still on the antibotics)  I feel it might help me better with any joint aches if I have them.  So not sure why the pharmacist seemed to indicate they are okay for short term, unless it’s just they are harsh on your stomach.

Mar 21, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Okay I added a discussion, hopefully I did it correctly 🙂

Mar 21, 2017 · Tips for first dr visit and tests/appt schedules in Visiting Mayo Clinic

I was asked by @colleenyoung to post some info I shared in another group. When you go for your initial visit if you are on a timeline and have to leave on a certain date be sure to tell the first dr you visit with. They still might not be able to get everything they want done, but at least they will know and if there are some tests or appts more important then others hopefully they’d be able to schedule those first. While not ideal I would say most tests can be done elsewhere (such as at home dr/hospital) if absolutely necessary and results sent back to mayo drs. Just remember you have options and ask what they are or even suggest ones and see what happens. My second tip is be sure that when you get your schedule of tests and appts you can always go to the desk the appt is scheduled for and see if you can get it moved up. I had tests over 4 days and got them all done in 1 1/2 days. I was able to get a dr appt moved up and freed up a whole day which that dr then added a bunch more testing so I was glad I had gotten things done to free up that day. There is a patient education center in the subway past the cafeteria that I never found time to go to, but really wish I would have.

Mar 21, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

My infectious disease with  dr wilson was on 6th floor east desk.  Not aure if your dr is there or not so probably best to call or stop by an info desk when you get in the building.