This is all new, scary, and very surreal.

[Urbanator]

I cannot tell you how happy I was to stumble upon this group while researching various treatment options and trying to understand what this diagnosis is and means. Your positive and supportive spirit on the threads lifted me up when I was feeling frightened and overwhelmed.

My mother has been deteriorating over the past year. Her RA getting worse and worse. Even being sent home from her job in a shipping receiving plant. She is 62 (and a smoker). Since February she has developed numbness in her left leg, and a sort of tingling sensation. I flew back for her mothers funeral and I couldn't believe how she shuffled, the pain she was in, and how she hadn't slept because of it. When her RA Dr. sent her for a chest CT I knew something was up. I was afraid it was cancer. The next two weeks became a whirlwind. My moms CT shows that she had pulmonary lesions (cavities). Chunks of lung gone! Still afraid is was cancer, we didn't understand why we were being sent next to a Kidney Dr. (good news is. That day was my mothers last cigarette!)

I got a call from her pulmonary Dr. telling me about Wegeners. He was positive that was it and the Kidney biopsy would confirm it. The more I researched, the more the Kidney Dr. spoke... the more I tried to understand this strange disease. He called it a medical Zebra. Every symptom leads one to think horses... typical. But this diagnosis is the Zebra, the unusual, the not expected.

My mother had the biopsy, she's also had a bronchoscopy with bronchial lavage, and a lower back CT (which came out clear). It's been two weeks since all those tests and even now on 50mg of prednizone a day, apo-hydroxyquine 200mg (since 2013), pmg-gabapentin 300mg, a day... the Tylenol #3 for pain. which sometimes works, but not really since she is still shuffling and having a hard time sleeping.
The leg numbness is what's really driving her nuts. Has anyone had a similar experience and what advice do you have about treating or managing with it?

The Drs have asked me to make sure I understand the course of treatment and to do my research. Which is how I found this site and the wealth of information. This week I'll be FaceTimed into her dr. appointments. and the hope is that treatment will begin next week.
Thank you for this group. Thank you for your posts. :rolleyes1:

[Mas78]

Welcome Urbanator
I can relate to your moms muscle fatigue and pain, that's what really drove me to see a doctor when I got diagnosed back in 2000. from what I've read and my Rhumy tells me Rituxan is the go to choice now days, I took Cytoxan though and it worked well for me.

I've been told there can be several things that can cause numbness and tingling. For me I've actually had blood clots in my left leg twice now, first time when I was really sick and couldn't get around very well. I was then tested and diagnosed for Factor V lieden which makes a person more prone to clotting. and again last fall close to the same spot in my leg as the first one so they believe it was caused by my varicose veins in the area, and my Factor V contribuiting.

Once I got diagnosed and started treatment my condition greatly improved and I'm sure the same will happen for your mom.
be sure to ask any questions you have, there will be somebody who will give you advice

[Jaha]

Welcome to the best source of caring people, with vast knowledge on this crazy disease, you will ever find. When your at the docs office make sure you take a pen and paper, to jot down things. This disease can be very complicated and it helps to take notes and to write down questions to ask about. I have neuropathy in my hands, legs and feet ( nerve damage), caused from the Wegeners. I know have to be treated by a neurologist. She may need to see several different specialists along her journey. The most important specialist of all to see, is a Wegeners, make sure she has a good one. Best wishes to your Mom on her treatments and to you as her advocate.

[Jayne 14]

Welcome Urbanator & your mum
Best place for help advice & support on your own journey xxx


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[BookNut]

Welcome. You will find lots of help and comfort here. I do NOT have Wegeners. I was misdiagnosed, but stayed on anyway as I find much to help with my respiratory issues.

Just wanted to make a suggestion. Have your mom check with her doctor first of course. But melatonin has been very helpful to me when the prednisone is keeping me awake. Adding sleep deprivation to everything else can be very discouraging. Melatonin is an OTC supplement and is not likely to cause dependence.

Glad you found the group!

[Debbie C]

I am glad you found our forum too,this is a place to come to ask questions,get answers or just vent away.So sorry to hear your mom is going through such pain but with the right drs. and the right medicine, in time things will get better.First of all,don't believe everything you read on the internet,it will just scare you.Things are not as bad as it says.Don't get me wrong though ,this is a serious disease and its needs to be treated promptly and the right way. The good thing is she did quit smoking. I also have involvement in my lungs and in order to get the right diagnoses I had to get a partial middle lobectomy,that was the day I quit also.
You can go to The Vasculitsis Foundation website for more info and I believe they should have lists of drs in Canada but if not there are several people on this site that can steer you in the right direction.The most important thing is to find a dr that has expertise in wg..even if you have you travel at first ,most drs will consult with your home dr on what treatment and like Jana said before it is over with she will have a list of drs she will be seeing since this disease can effect every part of your body. But please do not hesitate in getting her to a specialist because untreated things can go downhill very quickly. Good luck and keep us posted and ask away.

[MaxD]

Urbanator: check out vasculitisfoundation.org for a list of specialists near you. I recommending consulting a specialist and having them treat your mom, or else having them coordinate/direct care with her doctor. It's a rare disease and no doctor should hesitate to work with a specialist. Good luck to both of you!

[kaysee]

Welcome urbanator, You have come to a great place for support and answers to your questions.

[annekat]

Welcome, Urbanator. Coming here is a huge step in the right direction for understanding this disease in its many variations and allaying some of your fears. If her current lung damage from WG is severe and progressing, CTX (cyclophosphamide, Cytoxan) may be the first drug of choice for getting it under control quickly. It worked well for me, and I had cavitations scattered throughout my lungs, though they were small and did not comprise large chunks as in the case of your mom. I think they shrink but may never fully heal, so my lung capacity may be permanently diminished, and I get a little out of breath, but it could be a lot worse. RTX is considered the state-of-the art treatment, but m ay not act as fast, though it can always be used later, and it's not good to stay on CTX any longer than necessary. There are several other meds used, too, according to individual situations. I concur with others that your mom needs the most experienced WG doctors she can find, though other competent doctors may get her started on treatment in advance of getting appointment with specialists, and they may consult with WG specialists on this list: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/) . Best wishes to you and your mom and please keep us posted on her progress, as well as joining in any discussions and asking any questions.

[drz]

I cannot tell you how happy I was to stumble upon this group while researching various treatment options and trying to understand what this diagnosis is and means. Your positive and supportive spirit on the threads lifted me up when I was feeling frightened and overwhelmed.

The more I researched, the more the Kidney Dr. spoke... the more I tried to understand this strange disease. He called it a medical Zebra. Every symptom leads one to think horses... typical. But this diagnosis is the Zebra, the unusual, the not expected.

Thank you for this group. Thank you for your posts. :rolleyes1:

They have a diagnostic program called Find a Zebra and when i put in my symptoms or some of my symptoms Wegs is first or second thing that came up. You might find it interesting to try and see what it suggests.

[Urbanator]

Thank you all for your notes of support!! My moms Drs are really fantastic. I do feel blessed to have them. We are exclusively working with specialists. But I feel like the disease is not cooperating. The nerve test came back with "significant damage". Which means that the disease is progressing. But somehow no kidney results yet!
We've been given two options right now, biopsy the nerve and see just how bad damage is and confirm the diagnosis OR just go ahead and blast it with Rituxan. I'm leaning toward just blasting it before the damage progresses further in the nerves. I'm so bummed about this news. We were hoping that the nerves could get better. I haven't even told my mum that they will likely stay that way. I don't want her to get depressed about it.

Has anyone had something similar with the leg nerves?? This is a crazy disease!

Thanks everyone! :)


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[Dirty Don]

I had neuropathy in both legs from the shins to the tips of my toes. Most of the numbeness in the right leg/foot is gone, but the left, altho diminished, has retained some of the neuropathy making me a bit more prone to stumbling than I usually am! I did a lot of massaging of both feet and it seemed to help. Best to you both.

[Debbie C]

This may sound silly but since Don said massaging helped ,I wonder if getting one of those foot massenging spas and put Epson salts in it may help,since there is pressure points in the feet that help different parts of the body ???????????

[annekat]

This may sound silly but since Don said massaging helped ,I wonder if getting one of those foot massenging spas and put Epson salts in it may help,since there is pressure points in the feet that help different parts of the body ??????????? I think it sounds great, Debra. Anything that promotes circulation in the feet should help, as well as the pressure points. I have seen many of those foot spas at the Goodwill.... not sure why I didn't buy one, waiting for the most perfect and least used one, I guess.

[Dirty Don]

I did mine by hand. Wife has a foot spa, but the ones that would work most efficiently would be the 'robotic' type where the feet are squeezed back & forth. Anne is right in that it's the circulation of blood that helped. Most nerve damage, unless caught early enough (within 6 mos.) tends to stay. Nerves are extremely slow at regeneration, if they do at all. Once past the 6 mos. period, approximately, most of the damage remains. Have seen it with many football injuries. I'd go get a foot massage by a pro if I didn't want to do it myself. Have fun!

[annekat]

It's nice that we are easily able to massage our own feet, if no one else is there to do it. ideally, I would go for the hot foot bath with epsom salts first, to soften and loosen everything up and maybe get rid of some of the dead skin. Then go for the massage action with the hands! Yep, I still have some of the neuropathy, though not as bad as some, I'm sure. I also get the hand and foot cramping, and I'm not sure whether that is related....

[Urbanator]

Awesome suggestions for the neuropathy! And great gift ideas for Mother's Day!! I hope we can reverse some of the damage. I'm afraid she won't be able to return to work as a Hilo driver.
I've got an apt with the Drs today to discuss treatment. We're going to start Rituxan. Here comes the next hurtle. I'm so great full for all the suggestions!!! You have no idea!! :)


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[annekat]

I think there are drugs people take for neuropathy, too. I just don't know or remember what they are. Anyone?

[MikeG-2012]

I think there are drugs people take for neuropathy, too. I just don't know or remember what they are. Anyone?

gabapentin/Neuontin
Lyrica

and others that I can't remember...

[kaysee]

I have issues with neuropathy in my left leg probably as a result of WG. I did physical therapy for about 12 weeks and was finally able to walk with the help of a cane. My dr then prescribed a neuropathy cream that had the following ingredients: gabapentin, flurbiprofen, cyclobenzaprine, lidocaine. The pharmacy had to make it for me and it expires in a month. It really helped. After about 4 days applying it 4 times a day I was walking pretty well without pain in the leg. Still had some pain from fluid in the hip joint. Well I went to renew the Rx today - and wouldn't you know it - the insurance will no longer cover any of those ingredients. The cost of a months supply was going to be $440. No way I can pay that - so I guess it is back to the dr.

[annekat]

That's very unfortunate, Karen. It doesn't seem right. :thumbdn:

[BookNut]

I once had to have a script that had to be made special. My dr. ordered it for me via a compounding pharmacy called professional Arts Pharmacy in Louisiana. Here is the website. Compounding Pharmacy | Professional Arts Pharmacy (http://professionalarts.com)

Maybe you could check with them and see if they can compund the nixture more cheaply. If they can lower the cost, perhaps your insurance will agree to cover it. They are WONDERFUL people to deal with. Friendly and accomodating. and they do what they promise. They once called me about some detail, and then said that i would have my medicine in 24 hours. I thought to myself..."fat chance from Louisiana to NY"...but sure enough, it was in my hands by the next afternoon.

[drz]

I have issues with neuropathy in my left leg probably as a result of WG. I did physical therapy for about 12 weeks and was finally able to walk with the help of a cane. My dr then prescribed a neuropathy cream that had the following ingredients: gabapentin, flurbiprofen, cyclobenzaprine, lidocaine. The pharmacy had to make it for me and it expires in a month. It really helped. After about 4 days applying it 4 times a day I was walking pretty well without pain in the leg. Still had some pain from fluid in the hip joint. Well I went to renew the Rx today - and wouldn't you know it - the insurance will no longer cover any of those ingredients. The cost of a months supply was going to be $440. No way I can pay that - so I guess it is back to the dr.

I seldom have such denials but I know there is an appeal method if I do but have been lucky so far that I have not had to use it. Usually it takes a couple phone calls and then often have the paperwork repeated in order to get some meds covered. Some are denied because there is an over the counter med that often costs the same or less than what the pharmacy carries so those I don't appeal.

Can you appeal the denial to see if it can be covered by your insurance?

[Rini]

This is way cool. We have a joke in my family about flipping through Dr. House episodes to guess which zebra will be the next. Immune problems are like a family curse. I refuse to belive it is not a genetic thing with an environmental trigger. This will be very handy!

[annekat]

Good to see you back, Rini, and glad you are doing well! :smile1: