wegeners sufferer

[t15mobley]

Have been diagnosed for 8 years but was never given the how bad it was so I went untreated...Had a Rheumatologist but lost him because "I missed to many appts." Only appts I missed I was in-patient. Now have been off treatment for appx. 6 months now having the sunburn looking rash on my legs and they are hot to touch and hurt like a sunburn. Have been running a fever for at least 2 months of at least 101.00 and higher. Go to er just to keep getting sent home pain is unbearable MOST DAYS EVEN WITH THE PAIN MED THEY HAVE ME ON.....AND RECCOMMENDATIONS? please add me on fb if you can Tonya Thurman mobley.

[mrtmeo]

What meds were you on?

[Dirty Don]

May I suggest you get back on the meds you were on. You're flaring. Also, maybe a new doc? Best to you.

[LisaMac]

I went untreated for 1 year, and...died. Please fight for yourself. Find a Rheumatologist who understands that you need constant supervision. Even in remission I don't go more than 6 weeks without an appointment. Do you have an advocate? Someone who can stand up for you and look at your labs? Someone who can say that you aren't leaving the office without help? Pain will usually make my symptoms worse.

[mishb]

Hi Tonya and welcome, I'm glad you found this forum.

I agree that you really need to get to a specialist and also get back on some meds.

I hope you can get an appointment quickly with a proper WG expert

[annekat]

Welcome, Tonya. Many of us go undiagnosed and untreated for a period of years, until things get bad enough that we end up in the hospital and get diagnosed. Others have more severe symptoms right away, or are lucky enough to get an early diagnosis even with lighter symptoms. It's unfortunate that no one conveyed the seriousness of the disease to you at the time of dx. A lot of damage can be done to the body when going untreated. So I agree with all of the above advice, to find a good specialist and get back on treatment ASAP. Or if it takes time to get a specialist, get a prescription from a family doctor or some other doc that you trust, if possible, to hold you over til you get set up with the specialist. They should know from your records that you have a dx and what meds you were supposed to be taking.

Where do you live? That would affect what specialists would be available. Try the Vasculitis Foundation and VPAN websites for lists of specialists that might be in your area. I will add you as a friend on Facebook... you will see the same avatar. And there are some groups on there you might be interested in joining, as well. Keep us posted on how things are going. And I'd get the rash looked at soon, whether it is from vasculitis or not.

[Tom]

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!