Therapy question

**Trudy** · 08-31-2011, 03:40 PM

Help please!
My doctor told me I will need to consider going on immunosuppressant therapy. I have read a lot and especially the threads here for reactions, and find it really confusing and scary. I realize we all react differently to drugs, but the doctors seem to vary so much on administering and tapering of these drugs. So far I have ruled out Methotrexate as it should not be used with anyone with a kidney function (eGFR) of less than 50…and mine is now at 46. Cellcept contains aspartame which I am allergic to, so it is also out. I have a history of bladder problems and Cytoxan can cause bladder cancer. My vasculitis affects my sinuses, eye, ear (all the right side of my head), and my right lung. I have one lung nodule and one shrunken and scarred kidney. Polyneuropathy has gotten very bad in both legs and I often have mobility problems. My liver markers are bad also. It is hard to differentiate between what is caused by my SLE (lupus) and what would be from the vasculitis, but they both are autoimmune and treated by the same drugs. My blood test markers for SLE are fine right now, but ANCA (both MPO and PR3) have been positive. My brain MRI shows no tumors, but inflammation in sinus, mastoid, and base of brain. Right now I take Plaquinil for lupus, and 20 mg of Prednisone, plus meds for thyroid and blood pressure. So….on my list I have left Rituxan and Imuran…are there any medications to consider other than those?
I realize you are not doctors, but with autoimmune issues the experience of others is definitely helpful and in my estimation seriously to be considered. I would welcome any input. What is working and what hasn’t? Does anyone know if any of the drugs are more helpful or harmful to certain parts of your body? That sounds like a silly question, but the information I am finding seems vague.
Sorry for the long post, but I have one more question. What constitutes a flare? I have read some people do not even have positive ANCA during a flare. If you are not in remission are you continually flaring? And I thought Lupus was confusing!!!!!
Thanks for your time! Trudy

**vdub** · 08-31-2011, 04:19 PM

What are you feeling like now? What are your conditions, signs, and sypmtoms? Do you also have lupus?

I think a lot of people with wg often do not have a positive ANCA. I was one of of those.

**Trudy** · 08-31-2011, 05:36 PM

Originally Posted by vdub

What are you feeling like now? What are your conditions, signs, and sypmtoms? Do you also have lupus?

I am tired, short of breath, nose bleeds with sores and crustiness in nose, pain on right side of my head, pressure behind my right eye, continual tinnitis in right ear with intermitent loss of hearing, polyneuropathy in both feet. I can only sleep in a semi-sitting position.
I was labeled with chronic kidney problems, bronchial asthma, and anemia since a toddler. I would get extremely ill for about a month (usually June) then be OK the rest of the year. After my first child I was healthy for years. I became ill again after my last child (21 years ago, I'm 62). Lots of doctors and tests. Finally, I was diagnosed with Lupus in 1998. I have had ups and downs with the Lupus. Right now those tests are normal, but I am even more ill. Two summers ago I had a vascular rash on my thigh that the local Rheumatologist made light of. When my PCP saw it, along with the fact of 105 degree fever, she suggested I find another specialist. I now go to a renowned Lupus specialist in Chicago. Vasculitis is common with Lupus, but not this type. During the past year he has tested my ANCA 5 times, 3 times the MPO and PR3 have been positive. It seems to be normal when I am on a higher dose of Prednisone. However the problems never go away now. Plus I have a lung nodule and my brain MRI showed inflamation. I used to have some bad days, but now I never seem to have a good day.
You have an amazing story, I am glad that you shared it!

**Sangye** · 09-01-2011, 01:11 AM

Trudy, all the drugs work but not all for everyone. I can't take mtx or ctx again, either. Since I have chronically severe disease (lung hemorrhage) the only drug left for me is rtx. Thank goodness it works for me, even if it makes me feel like death warmed over for 6 weeks each time I take it.

With some of your symptoms it sounds like you need one of the 2 stronger drugs--either ctx or rtx.

BTW, I didn't know CellCept has aspartame. That might explain all the common side effect of diarrhea. Man, I was on it for 2 years. I avoid aspartame and other artificial sweeteners like the plague. I guess I'm glad I didn't know about it, since there was no other drug option for me at the time. I wonder if the generic form has it as well.

**Trudy** · 09-01-2011, 03:15 AM

[QUOTE=Sangye;46219]BTW, I didn't know CellCept has aspartame. QUOTE]
Sangye, I have noticed alot of people seem to have a reaction to Cellcept....I wonder if it is actually the aspartame they can not take!

Can I ask, does your lung hemorrhage often?
Two winters ago my husband was in a cast, so I thought I would shovel the walk. I lasted 15 minutes, and came in coughing up fresh blood. I didn't have a cold, but continued coughing (but not more blood) for days. With Lupus I tend to ignore any symptoms that go away realitively soon, rather than take Prednisone. For the past two years I have been on a Prednisone rollercoaster, but now I can't lower it without getting sicker. I have eaten organic foods and lived as chemically free as possible for about 40 years. Avoiding stress might be a different matter. I have nine kids spread over 21 years, taught school for 23 years, did craft shows, and like to be busy; however I think being sick and inactive is actually more stressful.
I always have a felling of pressure in my bad lung, do you have that?

**pberggren1** · 09-01-2011, 06:48 AM

I wonder why they would put aspertame in cellcept.

**Sangye** · 09-01-2011, 09:03 AM

In my case, every time the Wegs becomes active it follows the same exact pattern: I get increasing fatigue, then joint pain and then shortness of breath. If we don't catch it and treat, my lungs begin to hemorrhage. I've been on rtx almost 2 years (wow, how can that be?) and every time it starts to wear off the same cascade of symptoms begins. My symptoms return before my B cells return and before my labs show increasing inflammation. The Wegs dog who lives at my house is one sneaky dawg.

**drz** · 09-01-2011, 10:21 AM

Originally Posted by Sangye

In my case, every time the Wegs becomes active it follows the same exact pattern: I get increasing fatigue, then joint pain and then shortness of breath. If we don't catch it and treat, my lungs begin to hemorrhage. I've been on rtx almost 2 years (wow, how can that be?) and every time it starts to wear off the same cascade of symptoms begins. My symptoms return before my B cells return and before my labs show increasing inflammation. The Wegs dog who lives at my house is one sneaky dawg.

It is interesting to me that my lab results too often lag my physical symptoms. I wonder if this is typical for others too. It is nice when doctors trust your reports enough to begin treatments before lab results confirm what your body tells you. Fortunately my lab results generally tend to eventually confirm the clinical impressions so i tend not to encountered the doubting and questioning that some others have reported.

**elephant** · 09-01-2011, 12:33 PM

That is interesting that your Wegeners likes your right side. My wegeners loves my left side more. I had a lung nodule removed on my left side, four sinus surgeries on my left side, problems with with my left lower calf gets swollen on and off, left eye pain on and off, and I leak on the left side of my nose. So weird. When I flare my ears get clogged, joint pain and very tired.