@jewel8888 I really feel for you, I hope they can find some answers for you and get onto it quick, mayo sounds like a great place, im sure they will get you sorted, I bet your dog helps alot I know mine is a great comfort to me. Please let us know how you get on.

@jewel8888, Julie, my heart goes out to you. I am SO glad you mentioned going to Mayo Clinic .. people from all over the world fly to Mayo Clinic, Rochester MN for the outstanding help they can get there .. TEAMS OF DOCTORS .. they WILL get to the bottom of what is going on with you.

If I was you .. just age 46 .. WOW .. Here is what I would do if I was sitting in your shoes at only age 46 with YEARS ahead of GREAT living!
1. I would collect AN/Y/ALL medical records I could get my hand on from ANY/ALL doctors you have seen. It may take them emailing you Authorizations for Release of Information .. BUT DO get started.
2. Contact Info given to me for: MAYO CONTACT
If you would like to seek help from Mayo Clinic appointment offices. The contact information for Minnesota
* 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
3. Schedule a flight to MSP .. the Minneapolis airport .. OR you can fly right into Rochester MN
4. Rent a hotel room that is walking distance from Mayo Clinic. You can google all these things. I have stayed in hotels in Rochester .. not fancy but close by. You will not need a car.

Hope this helps you Julie .. but if you have read the posts on our Forum .. you KNOW how big I am on being your OWN best advocate!! That NO ONE cares about your body as much as you do .. AND if you don't take good care of IT .. IT CANNOT take good care of you. Sending you a hug in this tough time! Katherine

Excellent plan, Kate. I believe seeing multiple docs during that visit will be ideal. Is going out of state affordable for you, Julie?

Thank you for asking Boomerexpert,

I dont believe ill be able to actually take the trip for both physical and financial reasons. I have insurance but with the many doctors i see here and my disability income alone finances are already tight.

For now i hope its ok i learn from all the caring responses and bring my questions to my providers. I am waiting on a return visit with the director of thoracic surgery at MUSC. He wanted me to restart methotrexate because my skin psoriasis and arthritis have gotten so extreme. He told me the other lung Dr i saw for bronchoscopy said i have a cavitary lesion so waiting until spring is best. Who knows if thats all can be done for now, i will continue to fight and try to get a handle on the infections.

I like the new group it helps me look at topics, better for navigation, and feel more comfotable.

Sincerely,
Julie

There is a new generation treatment for Psoriatic Arthritis that does not suppress the immune system! Sounds perfect for you. Wish I could take it by I have regular RA not PA. A dermatologist would know about it...

@jewel8888, Julie .. you just stick with us Kid .. we'll be here for you every step of the way! You may not be able to get to Mayo .. BUT we will try to help you advocate for yourself the best way we know how! Just keep asking questions .. reading .. educating yourself .. doing your "due diligence" .. you WILL come out on the other side of this thing!! Sending you a hug in this tough time! AND lots of positive energy! Katherine

Boomer, as we well know .. MANY of our doctors are not always up on things .. do you happen to know the name of the 'new generation treatment for Psoriatic Arthritis that does not suppress the immune system'? Julie has so many things going on I think it would be helpful for her to have this info. Thanks! Katherine

Unfortunately I do not and I did a google search to find it before writing in the hope that I could. She can contact the National Psoriasis Foundation https://www.psoriasis.org/ - sure they'll know! My docs who do know work 1/2 days on Friday so not in office (yep, FL, where docs go to semi-retire...). I will see if I can get a name for you next week, Julie, but sure you can find it through PA related sites.
Terri

Yes look for medications that don't suppress your immune response.
I have RA also and all my troubles started with the medication I was taking for RA Humira. That started a 6 week pseudomnas pneumonia that developed into bronchialectasis. That was 8 years ago when I quit Humira.
Anyway RA is doing great on the antibiotic Minocycline 3 X a week.
Not sure what medications is used for psoriatic arthritis but hopfully find something that doesn't suppress your immune system : )
Shari

I believe you are suggesting Otezla. I tried this medication in Nov/Dec. I had to retreat because of tendonitis side affects. It is a slow process healing from the reaction to the onset of parthesis, neuropothy ,sticff neck, swollen joints and tendon pain.

I found there is a FDA black box warning on this new medicine in Australia for such reactions but not here in US. Ive strggled to find mire info about this.

I appreciate Sherri, mentioning this started with Humira, i also had my infections and lesion diagnosed after starting Humira. It seems my body likes "old school meds". I remember working at NIH seeing patients on trials for Enbrel but i wasnt a candidate then so i know im too complicated now. I hear many are doing well on Otezla or Humira so dont want anyone to take my post personally, it can be a life saver for others!