I did look up and see minocycline is also used for psoriatic arthritis also.
I learned about it on another board its called:
"The Roadback Foundation"
Just google that and check it out
Its non immune suppressive medication!

Thank you Shari,

Oops i mistyped your name when i mentioned you in a post to boomerexpert, Terri. Its hard with the fingers typing on my phone and spell checker not available here, lol. Like you my bacteria and fungal problems started in my lung when i started Humira. I go to the Dr in a few weeks so will be talking about the bad reaction i had to otezla and what we can do to minimize the bacteria infections etc. I would have tagged you in that message, could you tell me how?

Hoping your having a good day,
Julie

To tag someone in a post do so as you would w/Twitter, @ and their user name

@pfists .. Shari , thanks for jumping in . I have no knowledge of RA .. so it is great helping each other like this when in addition to MAC there are other issues! Hugs! Katherine

@jewel8888 .. Julie, thanks for your post! This is all so interesting! Your statement 'my body likes "old school meds'. I absolutely think this is SO relevant! YES so many new exciting drugs are coming out .. BUT there is LITTLE time tested research on them! WHEN IN DOUBT .. request the older generic drug! They have the MOST data backing them up.

I JUST had this experience. My husband is doing WONDERFULLY with his CLL on a chemotherapy call Imbruvica. It is said if you don't have problems with it upfront .. it can be come 'life sustaining" .. not a cure but 'life sustaining'. WELL all of a sudden his Oncologist "suggests' a change to a new drug . . he had just been to a conference on it 12/16. You know me .. I did my "due diligence' .. spent half a day on it. NOPE!! Just ONE of the factors I found: I won't name the drug .. '. March 2016 The company stopped 6 trials on Monday after reports of serious side effects--including multiple deaths--among participants in several of the studies.' That was just ONE of the 3 VERY negative things I found on the drug! I am fully aware that doctors do NOT have half days to research every new drug they hear about .. BUT this is why I SO stress 'due diligence'!

All your examples speak right to my recent experience! We ALL must continue to do our due diligence! Katherine

Thank you Katherine, your example is one that could have really impacted your family and i am so glad to be talking here for these reasons and more

. Im trying to help others to nake sure they get a chest xray before staeting new lifechanging meds. My current drs didnt believe it wasnt a requirement before Humira was stsrted. Due dilegence is better tham putting ourselves in worse situatuons. Im sure your husband appreciates it. Thank you also for saying to stick around. I will and happy so far for all yours and others support.
Julie

@jewel8888, Julie, thank you for your kind words! Funny, but I tease my husband that I am his 'Unpaid Medical Secretary' .. to which he always responds that I am 'well paid'! We MUST advocate not only for ourselves .. but for family members or friends!

Yes, INDEED we CAN help others by reminding/teaching them to do their own 'due diligence' and being their own best Advocate! If there is one thing we are learning from each other .. it is those two things! .. AND if we can help others as we are being helped .. surely THAT is 'playing it forward'! How better to thank each other than helping yet another person .. good for you! Hugs to you! Katherine

Hello Julie, I am Terri M. I too live in S.C. in Bluffton. I see that you live in S.C. also. I hope it isn't in my area because you will not get proper care here. I have gone thirty years with getting misdiagnosed or just sent home with antibiotics. Meanwhile, my lungs were being destroyed because a sputem test was never done to get the correct antibiotics. I now have only 1/3 of my lungs left. it is EXTREMELY important to seek out the proper help. I started treatment at the Mayo three yrs ago, and I can tell you, my quality of life is so much better.

Hi Terri, thank you so much. I moved to Myrtle Beach a year ago. I knew i could get insurance and see what drs i decide i need. Im better off than the plan i had. My old NC Drs didnt do anything, not realizing i had lung issues after a three level neck fusion.l in 2015. I dont have TB but the scar tissue thet see they cant explain yet.

MUSC Dr i met sounds qualified, but he is reluctant with my new shellfish allergy and uticaria that isnt going away. He said he wish i didnt live at beach, its makung me worse.

Terri, Oops, hit the send button. I feel so bad your having less lung function. Im supposed to do a breathing test, the last appt i had rhe girl left early because hurricane Mathew was headed our way, so i am tryibg to be patient.
Hugs to you, hopibf your having a nice day.
Julie