Newly Diagnosed

[Masha]

Marsha, I guess one of the many questions I have is how do you know you are in remission? I have had a round of Retuximab (weekly doses for 4 weeks) although I do feel a lot better, I am still having issues, my nose continues , I still have double peripheral vision in right eye, constant fatigue, and shortness of breath with exertion. I have a follow up appointments with the rheumatoidologist and pulmonary ( masses from Wegeners ). I have slowly weaned down the prednisone, now taking 15mg daily down from 40 mg until follow up with the Dr.s. With the decreasing doses of prednisone, my joints are starting to ache. Sherry

Sherry, remission is hard to determine, since there are many blood tests involved. My C-anca has always come in higher than normal. I think the best way to tell remission is how you feel, doesn’t sound like you are there yet. After my first series of Rituxan, I mistakenly figured I was going back to normal and I really overdid it. What I was really feeling was a jump in energy from prednisone during infusion. I ended up flat on my back.
Here are a few things that helped me. Prescription Fluocinonide on Qtip for nasal crusts. I was directed from people on this site to get a Sinu Pulse machine. It is wonderful, far better than those ridiculous pots to irrigate. My ENT, who diagnosed me suggested I take Mucinix, you can get generic. I take one a day. For leg pain, I take an Epi Epson Salts bath nightly. Fortunately, I have a big deep tub. I only use half of what the bag suggests. When the pain is really bad there is Deep Blue Rub.
My Duke doctor who is a specialist in Wegeners started me on three Bactrim a week. The members going to Cleveland Clinic are also on this. My doctor was on the team that determined 2 day larger infusions are as effective as the 4 day. She has seen everything, even Wegeners of the breast!
I wasn’t on this site very long before I realized I had a hole in my septum. Pure panic! Others who have had theirs turn into saddle back quickly responded and told me how they dealt with it.
Are you currently working or on sick leave? Have you found a Wegeners specialist? I wish I would have done that in the first place instead of wasting time with a non specialist rheumatologist.
Masha

[sshiveley]

The rheumatoidologist specializes in GPA, I really don’t think I am in remission either, don’t feel like myself at all, which is frustrating as I was always active. I was on sick leave for 2 months but now back at work in the ER. Co-workers ask how I am feeling and say I look great, I just smile and say thanks but underneath it all I feel terrible. I really hope I don’t blow my septum, can’t afford another surgery or time off if work. It all could he worse though, I see so many tragedies every day which keeps me in check. Sherry

[sshiveley]

I am also on Bactrim X3 weekly, but only 3 times a week how does this deter bacteria?

[Pete]

I am also on Bactrim X3 weekly, but only 3 times a week how does this deter bacteria?

It’s prophylaxis for PCP pneumonia to which immunosuppressed people are more susceptible.

[sshiveley]

Thanks Pete, for some reason I thought I was taking it for my kidneys, good to know I am somewhat protected, especially with the people I come into contact with at work. Sherry

[seied]

The rheumatoidologist specializes in GPA, I really don’t think I am in remission either, don’t feel like myself at all, which is frustrating as I was always active. I was on sick leave for 2 months but now back at work in the ER. Co-workers ask how I am feeling and say I look great, I just smile and say thanks but underneath it all I feel terrible. I really hope I don’t blow my septum, can’t afford another surgery or time off if work. It all could he worse though, I see so many tragedies every day which keeps me in check. Sherry

Dear Sherry,

Sorry you are also going through this.

I'm about to complete my second year with this and I managed to figure out a few things about how this disease and the treatment interact with each other, which I will share soon. I'm almost in remission and no longer afraid of relapsing. Currently using Mtx weekly and a little Prednisone daily.

Right now, I think a good option for you is to contact HR to determine if you have a short-term disability coverage, and if so, you may want to use it. Your health is of utmost importance, and managing this illness is very difficult and challenging.

In the long term, as you know, the treatment is immunosupression, possibly for the rest of your life. In your line of work, you're exposed to all sorts of pathogens. Our risk of suffering complications of opportunistic, contagious diseases is dangerously high.
Ed.
(I'll follow up later)

[sshiveley]

I did check into disability at work, they only provide 60%, not enough sadly. Sherry

[Masha]

Sherry, Regarding your long term disability_ If you qualify for long term disability and you have paid into Social Security for 40 quarters, you are qualified to receive the full amount of SS that you would receive at age 65, in addition to your disability income. Not only that, you would then qualify for Medicare. Health insurance, such as Medicare is paramount to someone with our disease. Your employer is probably taking money out of your paycheck for insurance right now. If you add up the cost of your commute, lunches, insurance etc, you might just be breaking even with this plan. You just might want to make an appointment with a disability attorney to see what steps you need to take.
Masha

[sshiveley]

Marsha, Thank you so much for this information!! I will definitely look into it, Sherry

[Masha]

Sherry, Just had lunch with friends. Their nephew has an autoimmune disease too. He applied for the disability 3 times. He was rejected the first two, but got it on the third try.
Masha