New from Colorado

[ScreaminMeanie]

Hi everyone. I've been reading a little bit and this looks like a really good place to be. Thank you all in advance for listening to my story!

I was diagnosed in June with WG for the second time. The first time was in 1991, and the only symptoms I had were skin and gum lesions. The doctors assumed I was in "final stage" and put me on high dose Medrol and Cytoxan. After about 8 months I developed Pneumocystis pneumonia and they took me off the Cytoxan and then tapered me off the Medrol. I lost most of my hair and went through early menopause (age 34) because of the Cytoxan. The good news is, the WG went into remission and stayed there until last fall.

I also believe that a flu shot last October triggered this flare. My symptoms this time started out with shooting pains originating from the site of the flu shot. Those diminished after a couple of months, but they migrated through my upper left quadrant and then down my entire left side. In December I developed two very small skin lesions on my face that would not heal. Meanwhile, in November I also had to have a breast biopsy/lumpectomy (which turned out to be a benign fibroadenoma *whew*). The incision site (or possibly the needle locate site) developed a lesion that popped open in early January. It spread and would not respond to any treatment, including a second surgery in April to clean up the wound and re-close the incision site. By this time I was starting to suspect it might be a recurrence of WG, and had been talking to my GP about it. He did a lot of blood work, but it was inconclusive. He also removed the two small lesions on my face and had them biopsied, again with inconclusive results.

In mid-April, I started having severe pain in my left foot. X-rays showed nothing, and the doc sent me to PT, which seemed to help for a little while. Then the pain began in my right foot. At this point my GP was stumped and referred me to a rheumatologist. It was June before I was able to see her. By that time, my ankles had swollen up to twice their normal size and I could barely walk, and the surgery site on my breast had opened up again. A week after my first visit with the rheum, I developed foot drop in my right foot, and took a couple nasty falls. By that time my blood work had come back and confirmed the suspected WG.

The rheum wanted to put me on Rituxan, but my insurance company won't cover it, and I can't afford the approximately $60,000 the four treatments would cost. We both wanted to avoid putting me on Cytoxan again, due to the extreme side effects I suffered the first time around, so I've been on prednisone and methotrexate since about mid-June, along with prilosec and Bactrim. The lesion on my breast healed up completely, and most of the nerve symptoms in my feet were gone. There was still some slight numbness in both feet, which seemed to get worse the more time I spent on my feet.

Everything was going well, and we started tapering the prednisone a few months ago. I was one day away from being off the pred entirely when I did my monthly blood work last week, and my PR-2/ANCA marker is back in the "active" range. The numbness in my feet had also stopped improving, perhaps even getting worse. So I'm in kind of a scary place right now, wondering if I'm going to have to go back on the Cytoxan, or go into debt for the rest of my life to pay for the Rituxan treatment. Coincidentally, this was one week after I stopped taking the Bactrim. I'm going to ask the doc next week if I should go back on it and see if my markers improve.....

Meanwhile, I'm scheduled for a nerve study on my feet in early January to see if the numbness is from lingering inflammatory processes, or from actual mechanical damage that was caused before I started the treatment.

It is really interesting to me to see how many people suspect flu shots to be the cause of their disease/flare. I'm looking forward to getting to know the group here and hear their stories of how WG has affected them and how their treatments are working for them.

[elephant]

Thanks for sharing your story. I know there have been quite a few members who were denied by there insurance re:RTX infusions...they finally got their insurance to pay for it. I forgot how and what they said. Brain fog. Recently Marta was just talking about the flu shot she received which she thinks caused a flare. So it is very possible that the flu shot cause your flare. Do you have a Wegeners specialist. Wish you well and we are here for you!

[renidrag]

Hello ScreaminMeanie: You will soon be hearing from a lot of the most experienced people dealing or having dealt with WG. Welcome to our group. Feel free to say whatever you feel, whenever you feel it.
Dale

[Thakator]

Hi,
May I add my welcome to that of the others. Indeed you shall find this site to be of considerable assistance as you continue down your weggie trail. I would simply relay to you that I too have had the numbness in the feet as well as staggered gait and inability to flex toes all of which, of course, makes walking somewhat ackward. I have seen a neurologist lately and have had those nerve conductivity tests - - failed miserably. He said that the main muscles along the sides of my feet were "gone". His word, gone, atrophied as the result of peripheral neuropothy which can be caused by several things. When I asked him if WG could be the cause he said "absolutely". I've since researched the matter and, sure enough, WG is listed as one of the causes of PN. Your feet troubles could, therefor, be a further manifestation of WG's nastiness - - or it could be caused by something else like vitamin B-12 deficiency, diabetes (which I imagine they would have detected in you by now), etc. Mine looks to be the work of our old buddy, that common bugaboo that brings us together in this e-world.

One other thing my neurologist said after studying an MRI brain scan that I had done this past summer; he said, "Well, the Wegener's isn't in your brain - - yet." Until that day, I didn't know that it could go there as well. It can. Even though its most customary sites of involvement are the kidneys, the lungs and the upper respitory tract, it appears that it can strike wherever it wants - - essentially anywhere there are blood vessels! Mine is primarily in the lungs yet still my feet muscles are "gone". WG, what a buddy that is!

Hope that you find much on this site to help you through your struggles. I do and thus I join in welcoming you to it. Ron

[Jack]

Hi and welcome to the site, I'm sure you will be bombarded with information about your condition, but the thing that struck me was the seeming lack of urgency behind your treatment. This can result in unnecessary permanent damage and can even be life threatening. If you have not already done so you must try to find yourself a Wegener's specialist. You will then receive the best treatment and they may well have the experience to obtain the drugs you require.

[ScreaminMeanie]

Thanks for the kind welcome!

I'm quite disheartened to find out that the numbness in my feet may be permanent. I haven't ridden my motorcycle since May because of feeling like I didn't have the foot/ankle strength to be safe. Looks like I may be selling it next spring if this hasn't cleared up. Time to start saving up for a trike, I guess! LOL

Jack, thanks for your kind words and concern. I didn't mean to portray my current treatment as lacking urgency. It's just that since I have the limited version (no lung or kidney involvement), we felt like we could go with a less aggressive treatment. My experience with Cytoxan was horrible: two major infections which both resulted in weeklong+ hospital stays, constant nausea, horrendous fatigue - I couldn't work more than 4 hours a day most days - plus the early menopause. I wanted to avoid taking that again if there were any way possible, so the pred/mtx/bactrim regimen was one the doc and I both agreed on. So far, it's yielded good results until this one blip.

Even though my doc is not a Wegener's specialist, she does have a lot of WG patients (especially considering how small of a town I live in). I think she said she currently is working with 14 WG patients. She has already said she is willing to go to battle with my insurance company over the Rituximab, but I didn't want to wait months for that to play out, so I suggested that in the meantime we do the less aggressive treatment. I think it may be time to unleash her on the insurance company, however......

[Sangye]

Hi, nice to have you in the group. I'm sorry your Wegs has flared up again, after all those years. Please don't take this as me being picky, but I noticed that you spoke about Wegs as if it were like cancer that could be cured and then reoccur, or even go into end stage. Wegs can go into remission, but it can't be cured. Also, it isn't a progressive disease like cancer, which progressively worsens and leads to end stage and death. You might understand all this, but I just wanted to clarify it for others who might not know. :wink1:

There are several drugs used for mild to moderate Wegs-- mtx, imuran and Cellcept. If mtx isn't controlling your Wegs enough, it might not be a case of needing something stronger (eg ctx or rtx) but of switching to a different drug that works better for you. I recommend you get started with a Wegs specialist. Here's some info to help you with those options: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/986-what-newly-diagnosed-need-know.html

Having said that, your early experience with ctx is not unusual. I don't know if it was routine in those days to use Bactrim as a prophylactic while on ctx to prevent PCP. I don't believe your experience with ctx would prevent them from using it again. Sounds awful, but you never want a drug removed from your list of possibilities. I can't take ctx or mtx again, which is enough to give me and my Wegs doc pause.

Other than that, I agree with what the others have said above and I'm glad you're here. :smile1:

[Sangye]

Just saw your reply that posted while I was typing....

I'm sorry to tell you that 14 Wegs patients is completely inadequate experience. Wegs is highly variable. If you compared 14 of us in this group it wouldn't even look like we had the same disease!

[Sangye]

One other thing my neurologist said after studying an MRI brain scan that I had done this past summer; he said, "Well, the Wegener's isn't in your brain - - yet."


That is absolutely horrible. Wegs is NOT a progressive disease. CNS involvement is quite rare. There is absolutely nothing true about his statement and it is wrong for any doctor to say such a thing. :angry:

Words like that have a way of sticking in our minds. I can only imagine what Dr Seo would say if he heard such a statement. When I first started care with him, I told him how my prior docs had treated me like I was permanently on the brink of death. He was very upset about that, very compassionate about how damaging that can be to one's thinking. And he set me straight.

[ScreaminMeanie]

Thanks for clarifying what I said, Sangye. I do know now that WG never goes away. The first time I had it, I had no resources for information (no internet!) except my doctor, and she told me when I finally got off the drugs that I was in "permanent remission." She did warn me that it was possible to "get it again" but that the chances of that were just as unlikely as me getting it the first time. So, until recently, I *did* think it was a "once and done" kind of thing. Still, a 19-yr remission with no symptoms during that time is not too bad, and I do feel lucky.

When I said that my current doc had 14 patients, I meant 14 patients with active disease that she is treating right now (she's gotten 13 of them on Rtx, either paid by their insurance or donated by the manufacturer, so I get the feeling she's quite the bulldog in that regard). I am not the only one who doesn't have lung/kidney involvement, but I do have the mildest symptoms of any patient she's seen. She's probably had 100 or more WG patients overall, and has a handful of WG specialists all over the country that she consults with. This is a very isolated small town, and the closest WG specialist is likely 300 or more miles away. I'm lucky that there are two rheumatologists and a brand new state of the art regional medical center here! If things get worse, I may have to go that route, but until I have to, I really can't afford the travel and the time off work.

My first time around I lived in a big city with a huge university research/teaching hospital, and they didn't do that great of a job with the WG! I like the doctor I have now. I think she is on top of things, and she is very responsive when I have questions - usually get a call back within a couple of hours. She's also one of those rare doctors who seems to understand that a patient is likely to know their own body better than any doctor ever could, and she LISTENS. To me, that's almost the most important quality any doctor can have!

[Jack]

One of the best moves you can make is to educate yourself as much as possible so that you are in a position to participate in the decisions being made about your treatment. This forum, together with other valuable resources on the internet are a great way to move in that direction. :)

[Sangye]

Very glad to hear all that.... It puts my mind at ease!

[Thakator]

Dear Sangye, Thank you so much for the heads up regarding my neurologist's comments. I shall most certainly bring this to his attention when next we meet and to that of my rheumotoligst as well.

When you say that WG is not progressive, are you implying that it cannot involve multiple parts of the body or multiple systems such as the respitory as well as the CNS? I'm still learning and thus this question is not in the least bit facetious; I'd really like your opinion because I do have peripheral neuropathy and I have found references which list it as sometimes being caused by
WG (albeit rare, like WG itself) and I do have the results from an open lung biopsy which confirms WG as having established residence in my lungs.

While I am at it I'd like to say that I find your postings to be of considerable assistance as I delve more and more deeply into our malady. And for this I thank you most sincerely. Ron

[Sangye]

Wegs can affect any part of the body. What I mean by "not progressive" is that it doesn't follow a progressive course and involve one area after another, automatically. Diseases like multiple sclerosis or ALS are progressive. More and more damage is guaranteed. With Wegs, while it can affect different areas, it doesn't necessarily mean that it will.

No matter what a Weggie presents with, a Wegs doc would never say "It's just a matter of time before you have involvement in x or y other area." Never. And especially given that CNS Wegs is so rare, they really would never say that's likely.

If it were me, I'd give that neurologist an earful at my next appointment. Even if I had a progressive disease, such a statement is incredibly callous and unproductive. He's not psychic. Even oncologists treating a patient with advanced, progressive cancer will talk in statistical terms of what is likely to happen and would still always express a ray of hope, not the way he said it. (eg "With cancers of this type at this stage, there's a 98% likelihood that it will spread to the lungs and brain within 3 months.")

The reason why this upsets me so much is that I know how easy it is to lose hope with Wegs. Even if we're fine today, such a statement can arise in the mind at a future time when we're hanging on by a thread. Feeling doomed is very damaging.

[ScreaminMeanie]

Dear Sangye, Thank you so much for the heads up regarding my neurologist's comments. I shall most certainly bring this to his attention when next we meet and to that of my rheumotoligst as well.

When you say that WG is not progressive, are you implying that it cannot involve multiple parts of the body or multiple systems such as the respitory as well as the CNS? I'm still learning and thus this question is not in the least bit facetious; I'd really like your opinion because I do have peripheral neuropathy and I have found references which list it as sometimes being caused by
WG (albeit rare, like WG itself) and I do have the results from an open lung biopsy which confirms WG as having established residence in my lungs.

While I am at it I'd like to say that I find your postings to be of considerable assistance as I delve more and more deeply into our malady. And for this I thank you most sincerely. Ron

I'm curious about this, too. Since my symptoms are almost entirely different this time than the first, and slightly more severe (e.g., the mononeuritis multiplex), I have also been wondering if the disease can act in a progressive fashion. Mainly, if I don't get this under control quickly, are my lungs and kidneys going to be the next target?

[Sangye]

LOL I just posted a reply above yours...

[Jack]

I would just like to second Sangye's comments on Wegener's progression. Although there are some "typical" cases which appear to involve a set group of organs this can never be assumed to be a stable situation and can change at any time. The changes that occur are not inevitably for the worse as in a progressive disease and I often joke that some symptoms have to get better in order to make way for the new ones! :)

Of course, things can take a turn for the worse and that is why I hate the term Limited Wegener's. These apparently mild cases can turn bad at the drop of a hat.

With good treatment, most patients will see some sort of remission from the symptoms. This can last for a considerable time or perhaps not, depending largely on luck. It is starting to become apparent that the drugs used to control the disease do not necessarily affect the remission period and if you can manage to go drug free this is a viable option.

[Thakator]

Thanks Sangye for taking the time to respond. And to you, MsMeanie, please feel to e-mail me if you'ld like to compare notes along the way inre. our neuropathic issues. Ron

[JanW]

Seconding Sangye's comments about WG not being progressive. Although, I have to say that my (very compassionate) docs will say to me, "the thing about WG is that today you could be feeling fine and suddenly next week your kidneys could start to fail" and I do not feel disheartened or offended (that having been said, they know me and see me often, know that right now I feel really well, and that my symptoms are totally controlled). So when I read the "yet" coming, I wasn't thinking of "definitely will" but rather "could happen." I do agree that no doc should be saying that to you if they know you very casually, or you are very ill because it's easy to give up hope.

I always thought that one of the best things for me (mentally) was knowing that WG is not progressive, and there's no reason right now for me not to believe that how I felt before diagnosis isn't the worst it could get for me.

[Sangye]

Yes to Jack and JanW's comments-- the fact that Wegs is unpredictable can work for you or against you! :unsure:

[julia]

I always like to hear stories of long remissions. Hope you are soon in remission again.

I have family in Durango Colorado. Have visited the state many times. My husband loves Colorado.

[ScreaminMeanie]

I always like to hear stories of long remissions. Hope you are soon in remission again.

I have family in Durango Colorado. Have visited the state many times. My husband loves Colorado.

Thank you! I hope so, too.

BTW, Durango is where I am! I love it here and would never willingly move back to a big city.

When I talked to my rheumy last week about the blood work, she called it a "bump in the road" and said not to get discouraged. She's said all along that I have been her easiest WG patient ever to treat. I think she was almost starting to doubt the diagnosis until this happened. LOL

[julia]

When you said you were near a new medical center I thought it might be Durango. My brother in law works at the hospital. He is not a doctor. He is in administration.

I do not visit as much as I would like because I hate driving in the mountains and hate to fly. Once I drove way out of the way to come up through New mexico or Arizona just to avoid the mountains.

Wish you well.

[RPylican]

Hi ScreaminMeanie ~ Your post caught my eye when I saw you were from Colorado. I am also from Colorado (Thornton) and was just diagnosed last March. They caught it pretty early and I do not have a lot of damage at this point. I have also responded pretty well to treatment. A few things you are going through sound alot like what I'm dealing with including early menopause (or peri-menopause) and numbness/tingling in my feet. I'll be seeing a nuerologist on the 13th so I'm very curious to see what they find. My symptoms started with arthritis like pain and swelling in my feet, legs and hands. It also included kidney involvement and bloody noses. I took cytoxan for 7 months and am now on Imuran. So far so good until my last appointment a couple weeks ago when I mentioned my feet were hurting again and I was experiencing some mild numbness. We'll have to see what they find but other than that, I'm very fortunate I was diagnosed early and I have such attentive and involved doctor's.

I love Durango, I've been to the college there many times for meetings. :cool: You are very lucky to live in such a beautiful place. Take good care of yourself.