gunnyl,
I'm very sorry to hear about your plight. Do you think your leg fracture was a byproduct of weak bones and long term prednisone usage, or was it the type of accident where someone with...
Type: Posts; User: richard052018
gunnyl,
I'm very sorry to hear about your plight. Do you think your leg fracture was a byproduct of weak bones and long term prednisone usage, or was it the type of accident where someone with...
Despite my vaccinated status, Delta caught up with me in early August (I thought I could take my child to an amusement park: bad thought). Extreme fever (103.5), weight loss (15 pounds), and overall...
This is the official guidance (from the American College of Rheumatology) that all of the doctors are going with. Dr. Villa Forte at the Cleveland Clinic as well as my local rheumatologist both...
Bummer on the Avacopan front
Per Dr. Villa Forte (met with her this week), she believes that if Avacopan gets FDA Approval, it will be approved for treatment of active disease to induce...
I know it is scary to think that you are having infusion therapy but the clinical trials and a decade of field usage show that this drug works. It worked for me. May 2021 will be 3 years for me. I...
Check with your local grocery chains to see what's possible in terms of curbside. My local grocer, Food Lion, has partnered with InstaCart to use their technology to put its entire store online. If...
Just my $0.02, but I'd rather deal with COVID than deal with end stage renal disease. I'd be on some prednisone immediately if there was blood in my urine. Use curbside pickup for your groceries,...
jmq: just curious, you mention 3 years remission but only 2 years of Rituximab. Am I reading this right? Were you taken off RTX maintenance, and now your ANCA numbers are out of sorts? If you...
This is a wild story, but it leaves out one very, very critical component. How are you doing RIGHT NOW? How are your kidneys (current eGFR or Creatinine)? What is your quality of life? Can you...
I'm supposed to be taking my Bactrim DS religiously (part of the Dr. Villa Forte care plan, glad to hear she doesn't pull you off of it before/after infusion, she doesn't manage my infusions so I...
Had my RTX infusion on last Wednesday. Went well. I got my lab draw before the infusion and got my results on Friday. All good except for a +2 on leukocytes (in urine). That smells like a UTI: I...
Does anyone have any concerns WRT the rate of FDA approval of these vaccines? No prior vaccines for any of the coronaviruses. New strains popping up every day. Will the vaccine handle the new...
Masha,
This is the study: https://clinicaltrials.gov/ct2/show/NCT00748644
The readers digest version: ...
The term used by my financial counselor was "I was grandfathered in because I was part of the old system" I was fully ready in my mind to drop down to 500mg.
Has anyone pursued getting Genotech...
Dr. Villa Forte (who I consult with mostly remotely) told me she expected the insurance companies to discontinue allowing 1000mg doses after one of the recent trials showed 500mg every 6 months was...
Hey,
If I could pile on to the ocular pressure discussion, I'm using Alphagan P and it has my pressure down in the mid-teens. One drop a day. It is liquid gold (very expensive), but thankfully...
Masha/Dr. Z,
That awkward moment when you think you are making a strong point and you look up and realized you were responding to an original post from June 2019.
While many of us are partial to the Cleveland Clinic, US News and World Report consistently ranks Johns Hopkins as the best hospital in the US for Rheumatology. Dr. Philip Seo is considered probably...
45 pound weight loss on Pred is incredible. I did the opposite: I gained 45 pounds. I want to take it off, but obviously not enough to put in the work. Hearing it is possible is enough to push me...
Masha: Just hoping for the best on this. Any sort of snake oil that will work. The Pred is tearing me up and I'd personally love an alternative.
Did they mention cost and/or insurance "buy in"...
Masha,
I'm sure you saw this. FDA application has moved from status "submitted" to "accepted" on AVACOPAN as a NDA (New Drug Application) by ChemoCentryx. FDA sets PDUFA (drug approval) goal...
The MAINRITSAN study was used to expand FDA approval for using Rituxan for remission maintenance. The dosage involved was 500mg every 6 months (I'm currently getting 1g every 6 months myself). In...
I am sorry to hear about your situation but will remain hopeful that you get the needed treatment and recover as much as possible. You have validated my worst fears of this pandemic situation: when...
I'm with seied on your prednisone usage. It seems a bit excessive. I would think with the trouble you are having you'd be a good candidate for the plasma exchange therapy, bring that up with your...
Gary: what was the basis for your GPA diagnosis (ANCA-C, PR3, Biopsy)? Did any of the medications help your lungs? Do you have kidney involvement? What are your inflammation numbers like now? ...