Sounds like you need to get back to your Reumy and get back to treatment!
Its hard to get an appointment with a specialist. I would suggest going to your family Dr and getting a referral to the previous or new Reumy and stick with the appointments.
I was dx'd late in the process, so I asked the reumuy, What would happen if I quit taking the meds? His reply was that best case scenario would be I would go 2, maybe 3 months before I flared! Worst case and most likely would be I'd go 3 weeks to a month and flare!
His concern is that if I have a flare/relapse, that it will be harder to get control of it if at all, and each successive flare would be more damaging!
Just having Wegeners is bad at any stage because untreated, it will progress!
As for the pain, insist on more than relief besides pain pills! Insist on getting some resolve. If you are like me, I went 5 years with problems and other health issues. If I can put a name on something I can deal with it. An example is I had stage 4 cancer and suffered for nearly 3 months til they found it. I dealt with it, I was fatigued a couple years later and felt like I did when I had cancer, we found it was diabetes, I changed my diet and it helped some but I got some relief! I eventually got to where I couldn't breath and had 2 lobes of my lung removed from a growth. 2 months later, I was suffering some symptoms similar to yours! I flared with the purpura and it was determined I had Wegeners! I hate it but I knew what ailed me and so I dealt with it internally as well as being able to take part in my medical treatment!
The road is long and hard, but get back to a Dr to treat you and stay with it! Best Wishes!
Nobody knows how we got to the top of the hill. But since were on the way down, we might as well enjoy the ride!
James Taylor, Secret Of Life
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