Lost in the battle towards remission

[nympha7]

Hello. I am the daughter of someone with this disease. My mother and I live in deep south texas where doctor's are in high demand but run like roaches to get the hell out of here. My mother was diagnosed three yrs. ago after being misdiagnosed fifteen years again, her pulmonologist claimed she was allergic to the dow of her parrots feathers. Finally after almost dying in the hospital after being admitted and discharged over ten times in a period of two weeks, her allergist was able to determine that one she and I weren't crazy making up stories of her collapsing daily as one ER doctor told me, but that she was either a cocaine addict, yes thats it my 72 year old, at the time mother does so much blow that she caused her nose to disintegrate or she had a rare disease called Wegener's Granulomatosis. Hallelujah finally an answer. Now here is my dilemma now .... her rheumatologist poor thing has been trying to force this bastard into remission with no such luck. She now has 85% hearing loss in one ear and 62% hearing loss in the other. She also just had triple bypass surgery last February due to this mofo as well. Now she is haveing constant uti's almost every month,her blood sugar is uncontolled and I fear she is headed for kidney failure. In the past she was only on prednisone. She has also been on methotrexate but we are still battling this bastards. Does anyone have any suggestions. I am losing my patience with this disease.

[Debbie C]

Hi Nympha7,sorry to hear about all your mom has been though.That is the biggest problem with this disease ,is that it is so rare that most drs. never even heard of it let alone how to treat it.SO saying that it is very important that you find a dr that specializes in wg.You can go to to the Vasculitsis Foundation website and maybe can locate a dr. that might be within travelling distance,if not there are many that will consult with your dr.There are a couple people on here from Texas so they may chime in and give you some advise. Has she ever been given any rtx infusions ( rituxan ) ? Most of us have several drs.,it sounds like she needs a good ent, a cardio dr.and a kidney dr .Good luck in your search but I can't stress enough how important it is she see a specialist SOON.

[Pete]

Hi Nympha,

Sorry to learn about your Mom's trials with our dumb disease. Here are a few thoughts for you...

1. Your Mom needs help from a weg's expert. Encourage (demand?) your local doc to consult with a Vasculitis expert. They often provide free consultations. You can get a list from the Vasculitis Foundation's website.
2. Methotrexate is usually used to maintain remission and seems to be less successful at inducing it. Rituximab or cyclophosphamide are the drugs used to induce remission and/or knock down kidney involvement. Rituximab is frightfully expensive, so you and your doc will need to work with your health insurance company to get preapproval. As an example, my two infusions carried a list price of $20,000 each. With insurance, my copay was $20 each. Genentech may provide some help if you don't have insurance.
3. Prednisone is a drug that we weggies have a love-hate relationship with. It makes our appetites go crazy resulting in weight gain and sometimes Cushing's disease (moon face and/or buffalo hump). It also causes our bodies to leach calcium leading to osteoporosis or osteopenia. I take calcium supplements to combat this.
4. Some of your Mom's hearing may return once the disease is under control and the infection is healed. I had to get hearing aids to help me hear better -- unfortunately, not normally. She should see an ENT to assess damage and see what can be done.

Let us know how she does. Btw, I'm 68, and have been fortunate in that I've been able to recover from this. I'm fours in since diagnosis. The best advice I've gotten is from the doc who diagnosed me: Take your meds as directed and live life as best you can. It's a one step at a time process.

[Dirty Don]

Welcome Nympha...the patience you're losing is what you and your mom need most...along with better docs. Best to you.

[annekat]

I agree with Pete. She needs the right meds to move her toward remission, and an expert enough doc to know what these are. MTX is not enough for kidney issues, I don't think. And she should never have been on just prednisone alone. If RTX is not feasible in the short term, financially or because it takes too long to get started on and to see results from, she needs something immediate like CTX (cyclophosphomide), which is a hard hitter and works well against kidney issues. All the drugs carry some risks, but it is worth the risk to get her better. Good luck to her and you.

[mrtmeo]

Hi Nymph,
Has your mom had cyclophosphamide (cytoxan)?
Inducing remission in severe cases is usaully done using either Cytoxan or Rituxan.
There are many here that have had really good results with Rituxan, especially, if Cytoxan didn't work well.
The kidneys can fail fast, so don't wait. Get someone in your corner to get the disease under control.

[annekat]

I agree with mrmteo that she needs something effective soon. This has been going on too long and if her kidneys are showing signs of failing, I would want to go with CTX (cytoxan, cyclophosphamide) ASAP, because it can be started immediately, either by pill or infusion, where RTX (rituxin, rituximab) would take time to get authorized by insurance, might require a hefty copay, and is generally said to take longer to work than CTX. The RTX could always be added later if it seemed like a good idea. She definitely needs an expert doc to make these decisions.

[mrtmeo]

Here are some people's experiences with weg's and their treatments from the vasculitis foundation
https://www.youtube.com/playlist?list=PL451A815B784B2048

[nympha7]

Thank you all for the advice. Its as if you've all given me the strength and motivation to keep pushing forward. She is now in Azathioprine 50 mgs three times a day, hopefully it helps still waiting on referral for specialist in june. Still praying ...thanks for thr support.

[mrtmeo]

Hi Nymph,
I am praying for you too!
My grandma used to get UTI's all the time due to a bladder lift surgery and she needed the strong antibiotics by iv, but after giving her cranberry extract she never got another infection again.

[me2]

Some really great suggestions above. I think waiting until June is way to long to wait. It sounds like it is very possible that she is still not getting proper treatment. This disease can progress extremely fast.
If it were me I would do anything possible to get seen immediately - even by an iffy Rheumotolist who would be at least willing to consult with someone from the Vasculitis Foundation list. You need someone who knows this particular disease very well to be advising - if not directly treating her.
I think it is too soon to be patient.

[Jaha]

Wishing your Mother all the best for getting on the correct treatment from a Wegener's Specialist. It is really important to tell the specialist everything about the onset of her illness. That will help them in determining what they will treat her with since she has been on preds and has had dx for a while. Keep advocating along with her, it helps to have someone there with you to listen when you are feeling so poorly.

[annekat]

I agree June is too long to wait. Azathioprine might not help her kidneys like something stronger. If you get a referral, keep calling to check for cancellations, and maybe you can get her in sooner. Meanwhile, her current rheumy could prescribe CTX any time and should know that, and can consult with specialists, too. When she gets a real appointment with a specialist, they can evaluate her progress on that treatment and will know where to go from there.

[Debbie C]

me2 and Anne are right,don't wait till June,that is way too long.She needs to be on the right meds yesterday! Call her dr. INSIST she get in sooner like Anne said he can consult a specialist and prescribe something else.Does she get monthly bloodwork and urine test done,that is very important to know where she stands ?

[annekat]

me2 and Anne are right,don't wait till June,that is way too long.She needs to be on the right meds yesterday! Call her dr. INSIST she get in sooner like Anne said he can consult a specialist and prescribe something else.Does she get monthly bloodwork and urine test done,that is very important to know where she stands ? Agreed. I'm not an expert and can't be sure that azathioprine won't help, and I don't know whether maybe your mom's age is a factor in hesitating to use a really strong drug like CTX. But if it's a matter of saving her, I don't think there should be any hesitation! My two cents worth.

[drz]

I got CTX in my late 60's. It is toxic drug and can cause lot of bladder infections by knocking down your immune system but this needs to be done to get GPA under control. AZA is then good for maintenance to keep it controlled. She may also need some higher prednisone dosage to try reduce the inflammation and bleeding in the nose and sinuses. A WEG expert should monitor her condition with weekly labs till things get better.

[kaysee]

Hi. I live in Texas, south of Houston. Where are you located?
I really trust my rheumatologist in the NASA area.
I agree with others that methotrexate will not stop the disease. She needs either CTX or rituxan. I think I've read that methotrexate is bad for kidneys. I may be wrong, bot if she has kidney issues she maybe should not be taking that. Ask the rheumy about that.
It sounds like the rheumy does not really know how to treat this disease. Try to find another who is a vasculitis specialist or who will at least consult with a WG specialist.
Private message me if you would like.