Low Grade Fevers

**RCOSSIO** · 03-12-2011, 09:02 AM

Not sure why he is not on any immunosuppressant. From what you are describing based on the above...he has active wegs. The initial regime is cytoxan and once the patient is stabilized, Imuran, Methotraxate or Cellcept.

Danell...is Mitch being treated with a Wegs Specialist...no doc would ever get a patient out of immuno drugs unless that patients showed absolutely positively no signs of active wegs.

I had no signs of active wegs for 2 years but was still on Cellcept and was just bumped up because of minor joint pains...I went right after it, did not wait and schedule all bloodwork and doc appt immediately.

If it was me...I WOULD GET TO A DOC WHO UNDERSTANDS WEGS. NOW!

**drz** · 03-12-2011, 09:53 AM

I had lots of plasmaparesis treatments intially. The way it was explained to me and my family the treatment would remove all my plasma with the bad antibodies. They then replaced the plasma with donated clean plasma that didn't have the bad antibodies. Then they tried to kill off the antibodies ones that were hiding and got away from the plasmaparesis by giving me me IV Rituxan, then IV Cytoxan since Rituxan wasn't working, either fast enough or at all depending upon which doctor you talked to, then with oral Cytoxan to keep killing off the undesired antibodies since oral was considered more effective and less risk of adverse reactions. I was also on 1000 mg of solumedrol during this time to try stop the bleeding in my lungs and kidneys. I also needed lots of blood transfusions to try keep my hemoglobin up. I believe the plasmaparesis along with rest of treatment saved my life and my kidneys.

**Daggar** · 03-12-2011, 10:34 AM

Exactly drz... same as Holly

Have you ever heard of plasmaparesis on its own? I can't see that unless there was some form of blood count recovery thing happening at the time and they failed to let Danell know a date they planned on starting an immune suppressant again? If there are PR3, or other, antibodies present and they're doing the plasma exchange what's to stop the immune system from regenerating them? It sounds odd.

**drz** · 03-12-2011, 10:54 AM

Originally Posted by Daggar

Exactly drz... same as Holly

Have you ever heard of plasmaparesis on its own? I can't see that unless there was some form of blood count recovery thing happening at the time and they failed to let Danell know a date they planned on starting an immune suppressant again? If there are PR3, or other, antibodies present and they're doing the plasma exchange what's to stop the immune system from regenerating them? It sounds odd.

I am just guessing but I think there might be some tests to see how effective the plasmaparesis actually was and period of waiting to see how quickly the bad guys grow back. That might determine what type of immunosuppressant is warranted to try control the bad guys. It is just a guess, but a question the treatment team should be able to explain to the patient and the family. Maybe there has been an adverse reaction to the heavy hitters too or some risk so they don't think it is safe using them either right now. Those are questions that should get answered for your peace of mind. If they aren't recognized experts this is where you ask them to call their colleagues and discuss the treatment options and then explain the choices. I like those choices simple "we try this or you die" or "your case is so bad that we will try everything and hope something works."

**Mitch** · 03-12-2011, 12:11 PM

Richard, I am no doctor, but I do believe that Mitch does have active Wegs...the neuropathy has spread in TWO days to other fingers. I would think this would be a sign...along with the low-grade fevers. Unfortunately, we in an area where no wegener's specialists exist...so until I found this site, we didn't have a clue about what to do except listen to our internist, nephrologist, pulmonologist and neurologist. We've sent all of Mitch's records to Duke...such a slow freakin' process. There is a doctor there who has done much research and publication on the subject. I feel like my hands are tied. We were told by the nephrologist only a couple of weeks ago, that this disease was clinically in remission; however, it seems to have come back with a vengance. Oh, me, I can't speed the process on my own and can't just find another specialist with whom to deal. NOW! would be my greatest wish.

**LilyPony** · 03-13-2011, 05:08 AM

I live in Cary (near Raleigh). I have spent the last 1 1/2 years trying to get somewhere with Duke. They do wonderful things, but they are severely overbooked and have no business accepting new patients. It took me 8 months to get my initial appointment with firm refusals to squeeze me in. I got in and my symptoms didn't fit neatly into the wegs box, so I was sent on my way to see what happened. Phone calls not returned. My 30-day follow up was many months later. I was put on pred with instructions to call if anything worsened and to return in 2 weeks. That was 6 weeks ago and they are "trying to find an appointment" for me. My phone calls about worsening symptoms were later responded with instructions to find an ENT or a GP to help. Granted I"m not in a life threatening situation, but there is active something going on and in the last few weeks have developed reynaud's and am having issues with that several times a day.

My GP, after a brief conversation with the staff at JH vasculitis clinic, determined that the first step for me was to get established with a local rheum who will consult directly with JH and/or send me there in person depending on what my needs are determined to be. My non-emergency (but somewhat urgent) appointment is scheduled for thursday which is 6 days after GP called. I know you're not in the immediate area, but at least it's somebody in state who has the time, interest, and ability to treat and consult with experts.

WALT CHMELEWSKI, MD
Triangle Arthritis and Rheumatology
2418 Blue Ridge Rd, Suite 105
Raleigh, NC 27607
(919) 881-8272

**Mitch** · 03-13-2011, 11:24 AM

I'm writing this in hopes that DRZ, Richard, Dagger and you, Lily, will all see this. Because of what you've all posted, I WILL on Monday call our internist and see that he makes an appt. with Dr. Chmelewski. For the first time, I feel some hope. You have all enlightened me and Mitch on so many levels. We can't thank you enough. Will keep you posted. Danell

**Daggar** · 03-13-2011, 01:16 PM

Good luck Danell ... Mitch!! I'm hoping that the feeling something is being done relieves some of your stress about treatment... that's the last thing you need at this time.