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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
Hello - I thought I'd post an update as my ID Drs here in NE were unsure if there was a protocal to be desentatize to one of the drugs I found out I was allergic to last fall. As I was weened off predisone, for an autoimmune issue, I started developing an itchy rash to Ethambutol. My ID Drs put me in touch with an allergist. Depending on what she says about me having RSV right now, I am supposed to be desentized a week from today. The allergist says she's never done this particular drug before, but has done a lot of others. It'll take all day at an outpatient center and maybe a part of the next, will have to see since she hasn't done this one before. I should note I have had clear cultures of MAC since August and I've been off Ethambutol since mid Oct. My timing of my mayo clinic trip, the holidays and restricted days the allergist does this have resulted in the longer than normal wait, but was assured by my ID Drs that a few months in the world of MAC isn't bad because of how slow it grows and my last cultures in Nov were clear. I know I haven't read ALL information on this page, but wonder if anyone has been desentized to this drug before and how it went for you? (I know results are different for everyone). Thanks.
Replies to "Hello - I thought I'd post an update as my ID Drs here in NE were..."
@tdrell that's interesting. Yes there has to be a nurse to monitor me. And they are putting me on 3 other allergy type medications. And they say if I miss a dose after doing this I will have to have it done again. She said they always want to see if they can go with a different drug, but if not they can desentatize (trick my body). Maybe it has to do with the reaction of the drugs they are desensitizing the person to and the persons medical condition. I mentioned this to the drs at mayo as well and the ID dr there seemed liked it was a good idea as well. I definately trust my medical Drs I've found and that was confirmed when I went to mayo. The ID dr up there said he agreed with everything my ID drs at home were doing. It's the Pulmonary Drs I don't always agree with what they say. Thank you for sharing your experience with me.
You have to be very careful with Tylenol. It is an effective pain medication for minor to moderate pain. By taking extra Strength Tylenol (2) 500mg tabs every 4-6 hours. is tough on your liver over time. Nsaids reduce swelling and inflammation as well as pain, but take about 6 hour apart. It is so painful when your hip starts to go south, but some stretching as tolerated do help along with ice packs. Best of luck my dear, I know how painful hip pain can be.
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Jillnc.....years ago when i had a confirmed allergy (x2) to all NSAIDS think motrin, aleve, celebrex and my hip was bone on bone. I needed effective pain control yet only tyelenol and narcotics were options. My allergist said one option would be to put me in ICU and to start giving me Pharmacy prepared tiny dosages of a selected NSAID and increase the strength slow but surely. He would be in attendance the whole time.....and PRIOR to doing this, I would need to have all my affairs in order and realize I might not survive the procedure. I opted to continue using large doses of tyelenol and then have the hip replaced.
So I guess I question the desensitization being done as an outpatient.TerriD