scleroderma medications and quality of life questions

@gila. Good morning. You and your husband have a lot to handle so we have got to find you some appropriate care. Are you now getting care at a comprehensive medical center or university med center? If not, that’s the 1st thing that you want to look into. I drive into Denver to UCH every 3 months for my care and it’s well worth it.
Or
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members This shows a system of Mayo-connected hospitals, several of which are in Arizona
Or
Call Mayo again and ask for recommendation of rheumatologists in your area
Or
Check with the Genetic and Rare Diseases for doctors in your area. https://rarediseases.info.nih.gov/

Will you try one of these suggestions on Monday and then let me know what you learn?

Thank you so much for your reply. I will read the info! I live in Southwest New Mexico where medical care is woefully in short supply. Can take 3-4 months just to see a general practitioner. Closest rheumatologist care is Las Cruses and they were not taking new patients. About 3 weeks ago my NP reapplied to Mayo for me and also to a rheumatologist she likes in Chandler. So far, no reply, so plan to call tomorrow, on Monday, to see status of referrals. Albuquerque is a possible option, it’s just logistics issues in that that husband is driving 5 and a half hours one way to get to Phoenix. He starts five weeks of radiation there at the end of February I haven’t been able to drive the last month due to feeling so bad (weak, foggy headed, dizzy, fatigue and wonky vision) that I would be unsafe. No family here. There is a little affordable private jet company that flies from here to Phoenix. I could fly them to Albuquerque also. I know I can’t continue as things have gone.
As you probably know, it is a long and frustrating battle to fight when you have barely enough energy to take a shower and get dressed. But I feel so much better this week than last month, so have clear enough head and energy to tackle this access to appropriate medical care again. Not called warriors for nothing:) I will let you know what I accomplish. Thank you again. Hope you are doing well!

I will just remind you that prednisone increases your vulnerability to infection. It’s also a miracle drug but be cautious and deliberate about avoiding infections.

I get that you need prednisone. I suggest you speak with some of the people on the PMR board - polymyalgia rheumatica - because Prednisone is a mainstay drug for them. Some have been on it for a decade. Tapering down to a low dose is as much art as science. But if anyone can guide you on how to make a case with your doc for a longer course of prednisone, it’s those warriors.
@dada might be someone who can hook you up with the moderator or
other subject matter experts

Good luck!!

Yes! Thank you for your reply. I wear a mask anytime in public and we live in a very rural area out in the mountains so our exposure to people is minimal. Our neighbors are mostly retired people like us, so we protect each other .
My dad had Polymyalgia Rheumatica and took prednisone for the last 10 years of his life. Every time they tried to taper him down below 5 mg, he was just miserable. He passed away from Lymphoma. I am on 2.5, but as a home care nurse I had a patient who was able to get by with 1mg. I’ve Always been a lightweight with medications, and that may actually be a bright spot with this disease.

Brilliant! You have all the insight you need! I misinterpreted your depth of knowledge - apologies.

I just got off a course of Prednisone for a rather bad RA flare. It was the first time I had it for 15 yrs when I took it for back pain and had a horrible experience. This time, it was awesome. I started on 20 mg and tapered off over four or five weeks. But for those first three weeks I was bullet proof, I had no pain anywhere, I was europhic. I had energy for days. All I could think was why I never heard of it in the 70’s 😁. Bit alas I can’t make a habit of it.

Good luck with your journey.

Gila, I live in Fountain Hills just east of Scottsdale. My PCP referred me to Mark Freijat, rheum, not taking new patients now but has a new partner, female. She’s taking new patients and you can get an appointment sooner than most places. She can also have Dr Freijat weigh in on your situation as needed. They are located near Shea and 90th street, so a little closer than PHX. You might be able to get an appointment with her while you are here with your hubby.
I would recommend that you request serum muscle enzymes measured as hydroxychloroquine rarely causes neuromuscular toxicity resulting in muscle weakness. This happened to me and it took a decade to figure out the cause. Also consider seeing a neurologist if you have any symptoms of peripheral neuropathy to rule out CIDP, another rare autoimmune disease. I have a good neurologist here too that might have an appointment opening while you’re here. You can pm me for contact info for both Drs.
I sure understand the level of fatigue you describe and wish you weren’t dealing with so many health issues between you and your husband! So glad we can help each other out to navigate the treacherous waters. I just discovered today that my hands look shiny and tight. I hope I am not adding SCL to my long list of AI disorders!
Good luck and take care.

Thank you for that info! I called the Scottsdale office and left them a voice mail. I see the one doctor has knowledge and experience with scleroderma, so am hopeful.
Today has been a particularly rough one, so when a little hope comes in, it is wonderful. “Treacherous waters” is a perfect description of navigating autoimmune diseases. Feels like swimming against the current and getting smacked with big waves. I’m sorry about you having hand /skin symptoms.
The fear of the unknown is the worst. Funny how getting a diagnosis, even if it is awful, is somehow better than not knowing.
Holding onto hope, one day at a time,
Gila