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[alhartzler]

Hi, I'm Angela. I was diagnosed with limited Wegener's in May of 2009. It began with a cold, which progressed to loss of hearing on the right, and eventually nasal bleeding/crusting, etc. I had sinus surgery and ear tubes placed, and was started on prednisone. Eventually I started methotrexate 20 mg per week, and prednisone was tapered off. I still have daily nose bleeds and crusting. My nasal symptoms are no worse, but certainly no better. My ENT says my right ear is in complete remission. What is worrisome to me is that over the last several months, I have begun to have joint pain that comes and goes. It varies between hands, elbows, shoulders, knees, and ankles/feet and toes. The most excruciating pain has been in my shoulders and feet/ankles. It sometimes feels like my shoulder is coming out of its socket, and is difficult to sleep. I take no pain medications, other than Aleve ocasionally. I recently had a parathyroid adenoma removed, which apparently was contributing to my chronically high calcium. I was hoping that some of the joint/muscle pain might be due to such a high calcium, but alas, the pain did not go away after the parathyroid was removed. So I guess it's the Wegener's. I see a rheumatologist, but she is not a Wegener's specialist. I am worried that the increasing joint pain is a sign that the disease is progressing systemically. I am not sure how to proceed. I am in a rigorous school program right now, and have 10 months until graduation, so I don't want to do anything that will make me more sick than I am by upsetting the balance. If there is such a thing with this disease??? Any advice or information on the subject would be appreciated. Thanks

[Psyborg]

Welcome to the board. It sure sounds like the Wegs is active for you. The sinus issues and pain seems to be a give away. I'm pretty new to this, but I didn't get the impression that someone could go into remission in a specific area but not others.

I don't know where you are in the country, but if you can get to a specialist or a vasculitis center I can't recommend it enough.

[alhartzler]

Thanks Bob,
Yeah I guess it sounds kind of ridiculous to say ear is in "remission" but nose isn't--- bottom line, NOT in remission. I guess I'm confused on the whole "limited" vs. "systemic" wegener's deal. My ENT said I have limited since no kidney involvement. But since I have joint pain/other symptoms, I do still have an active, systemic set of symptoms, right? Confusing. I appreciate your input. I am from the Dallas/Ft. Worth area, and I have no idea where to go to a "major" center, or if there is one in the Texas area. Do you happen to know? Thanks again for your thoughts. Much appreciated.

[Psyborg]

I don't know for sure. The big centers are Mayo, John's Hopkins, and Cleveland Clinic (With new one in Utah recently).

I also have limited wegeners for the same reason, no kidney involvement. But that doesn't mean much it's still a very serious disease. My doctor says she doesn't care for the limited tag.

[alhartzler]

I guess I don't care for the "Limited" tag either, gives one a false sense of security for sure. I think I will look into the Mayo. I read something about a new vasculitis center there. Do you have joint problems? If so, what do you take for it? And, what other meds do you take, if you don't mind sharing. I'm on 25 mg of methotrexate and bactrim ds currently. I increased the methotrexate dose a couple of months ago. Also folic acid of course. Thanks for your input
Angela

[Sangye]

Hi Angela, welcome to the group. This thread has info especially for you: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/986-what-newly-diagnosed-need-know.html

Your ENT clearly has no idea what s/he is talking about, to say that your ear is in remission. That's a new one. Tell him/her that your ear happens to be attached to the rest of your body, that is clearly not in remission. :glare:

Migratory joint pain is a sign of active Wegs. You are right to think that the increasing severity indicates increasing disease activity.

The term "Limited" Wegs does more harm than good. It only indicates that the Wegs is not affecting your kidneys. So someone could be on a respirator in lung failure and they'd still call it limited. The thing is, there is nothing keeping the Wegs from affecting any part of the body at any time. It doesn't mean that will happen though. It's not like cancer that will inevitably spread.

Right now it looks like the Wegs is mainly affecting your sinuses and ears, with joint pain due to general inflammation (Wegs doesn't attack the joints and damage them). More widespread Wegs involvement can happen slowly or very quickly. It's very important to get set up with a skilled Wegs specialist and team of other specialists who sees tons of Weggies. The thread has info on how to do that.

You cannot wait with Wegs. I know you have plans for school but you won't be able to complete them if you don't treat this properly.

[alhartzler]

Hi Sangye,
Thanks for your info. So you think the increasing joint pain should warrant seeking a wegener's specialist? I just didn't know if this was something to be expected and live with, or should require a change in treatment. I have been debating on whether or not my rheumatologist is knowledgable enough about Weg's to treat me. She seems to leave alot up to me, and frankly all the information is confusing, somewhat contradictory, and overwhelming. I will visit the thread you suggested, and I really appreciate your input. What do you think they might do about increasing joint pain, if all other symptoms remain the same (sinuses, no kidney involvment, no lung involvement, etc) Just out of curiosity, since you are obviously very well versed in Wegs. Any help appreciated.
Angela

[drz]

My Wegener's started with mild nasal stuff, a few months later I got the migrating joint pain which gradually became worse, then more fatigue and weight loss, then it began moving rapidly with blood in urine, scerlitis of eye, kidney involvement that were failing quickly, total loss of hearing in right ear, and then serious bleeding in lung that almost killed me. All these last symptoms happened in a matter of days after smoldering away for many months.

You can't count on Wegener's disease to be nice and wait till it is more convenient for you to get treatment. It will do what ever it does with no warning and regard for your health. If you get proper treatment early you can usually avoid permanent damage like kidney damage, lung damage, blindness, hearing loss and many other unpleasant things you want to avoid if possible. Like the others said get to a specialist ASAP!:scared:

[alhartzler]

Yes, I guess it sounds kind of ridiculous to want to put a disease on "hold" for the moment. I was struggling with whether it meant it was progressing, or just thinking it was an expected part of the disease, and not necessarily that things were getting worse, if that makes sense. I am going to actively seek a specialist now. Especially after hearing some of the input I've received here. Thanks for sharing your knowledge and experience.
Angela

[Psyborg]

Angela,

I totally understand where you are coming from...it's a very confusing disease, and a bit scary when you start reading up on it. This forum helped me a great deal, as did getting with a specialist at the Cleveland Clinic. The Mayo clinic is a great hospital from what other's on the forum have said as well so I don't think you can go wrong heading up. I think it sounds like you were already concerned with the lack of knowledge by your current doctors (and trust me that seems to be pretty common with this fairly uncommon condition), go with your gut and get into a specialist as soon as you can. It is quite possible go get that kidney involvement later if you don't get the proper treatment now.

[Sangye]

Glad to hear you're going to find a Wegs specialist, Angela.

Whether someone has very mild involvement or very severe involvement, and whether someone is currently doing well with treatment or not, it's important to get connected with a Wegs specialist. The diagnosis itself is reason enough. Some people who either have mild disease or who are responding well to treatment say that they'll seek further care if things worsen. That's not a good time, because you may quickly be in a situation where you can't travel or you don't have the strength to take on your local doctor and get a Wegs doc involved.

[JanW]

I just wanted to add that Boston University with Dr. Peter Merkel is a center also, so it just depends on what is most convenient to you. I don't think that you can go wrong with any center.

It could well be that your initial treatment was not strong enough -- mtx (which I am on), is generally for less severe cases vs. cytoxin or rituximab, which are 'stronger' drugs. At 17.5 mg of mtx, my symptoms completely disappeared within two months or so.

[drz]

Yes, I guess it sounds kind of ridiculous to want to put a disease on "hold" for the moment. I was struggling with whether it meant it was progressing, or just thinking it was an expected part of the disease, and not necessarily that things were getting worse, if that makes sense. I am going to actively seek a specialist now. Especially after hearing some of the input I've received here. Thanks for sharing your knowledge and experience.
Angela

It can take some time to set up an appointment with a specialist. For right now can your current doctor consult with a colleague that is a recognized expert. All the major treatment centers for Wegener's have doctors that will do an immediate consult by phone or electronically. It is very likely he knows one of the experts personally, since they often attend the same conferences, that he can call now. This can also help speed up referral for face to face too if needed sooner. They can review current lab work and tests and recommend other tests and treatment that might help you in the mean time.

As too where you eventually hook up it might depend upon lots of variables like best plane connections from your local airport, who accepts your insurance, and who your doctors know the best and where they can get you seen the quickest. Good luck. All the major Centers get good reviews by users here so you can't go wrong that way.

[alhartzler]

To all who have replied,
Thanks for all your thoughts. I called Mayo today, and they are not accepting any new patients. Then they referred me to three Rheumatologists located in Texas that trained at Mayo. I was able to get in touch with one of them. He said he has only treated 12 cases of this in his lifetime, and he says he's been around a while. He said what makes a Wegener's specialist is the fact that there are one or two docs at a "center" that have a particular interest in Wegener's and have access to more of those patients. i.e.- the Mayo clinic and other centers. So, I guess I will try to get my current Rheumatologist to consult with a Weg's specialist as has been suggested here. I really don't quite know how to say to her "hey, I don't feel like you know what you're doing, and I'm not getting any better--quite possibly getting worse, so could you call up someone who knows what they are doing, and get some direction on my treatment"......??? Any suggestions on how to do this tactfully and still get the desired outcome?

[alhartzler]

Also, just wanted to add that I will be calling additional centers as well. All of your shared experiences, advice, thoughts etc. are greatly appreciated, and it helps me to know there are others that are or have been in a similar struggle. Even though I was diagnosed in May of 2009, I feel like I'm pretty new at figuring things out. Thanks to all again.
Angela

[Psyborg]

Try Cleveland Clinic...As far as I know they've always accepted anyone contacting them.

[Sangye]

That's very odd about Mayo not accepting any new patients. I've never heard that before. I encourage you to try at another center. I would definitely not be under the care of someone who's only had 12 patients. Actually I was, and it was disastrous. I sustained a lot of damage, some of it permanent. That was my first local rheumy. Horrible.

[pberggren1]

I find that quite odd too that Mayo is not accepting new patients. When I phoned there last May I spoke directly to Dr. Speck's personal secretary and she said I could get in there by June if I wanted.

[drz]

To all who have replied,
Thanks for all your thoughts. I called Mayo today, and they are not accepting any new patients. Then they referred me to three Rheumatologists located in Texas that trained at Mayo. I was able to get in touch with one of them. He said he has only treated 12 cases of this in his lifetime, and he says he's been around a while. He said what makes a Wegener's specialist is the fact that there are one or two docs at a "center" that have a particular interest in Wegener's and have access to more of those patients. i.e.- the Mayo clinic and other centers. So, I guess I will try to get my current Rheumatologist to consult with a Weg's specialist as has been suggested here. I really don't quite know how to say to her "hey, I don't feel like you know what you're doing, and I'm not getting any better--quite possibly getting worse, so could you call up someone who knows what they are doing, and get some direction on my treatment"......??? Any suggestions on how to do this tactfully and still get the desired outcome?

Most good doctors are very happy to get a consult with a expert but are often reluctant to bring it up, but will be relieved to help patient get one when patient suggests it. Just tell him or her you would like to get a second opinion or consult about your current treatment to be sure it best plan for you or to explore if there are any other options we should explore or consider and ask which expert on Wegener's disease would they recommend and see how it goes.

[alhartzler]

Yes, I thought it odd that Mayo center was not accepting anyone new. The lady said they had had some retirements, and had not yet replaced some of the staff lost. She said I should call back in 3 months. Then she connected me to the alumni center, where they referred me to the 3 rheumatologists in Texas that were trained at Mayo clinic. Maybe I didn't word my inquiry correctly or something. I asked about the vasculitis center, and she clarified as to the vasculitis center connected/related to the rheumatology department. (She said there were two vasculitis centers, one with rheumatology and one within vascular dept) She said I might be able to see an ENT there, but that they would not take care of any rheumatology referrals/needs, etc. So, I am going to try Cleveland center next. I live in Texas, so it doesn't really matter to me which center, since they are all far away/out of state. I just want to get to a place where I can see someone who specializes in Wegener's. If anyone has any input on the Mayo stuff, as far as if maybe I did not inquire properly, let me know. I used the numbers posted on another thread for new appointments. Thanks everyone.

[Sangye]

Angela, if you used the numbers posted recently by MinneapolisMark they should be accurate, but you might want to PM him to make sure you're calling the right place. In the end you'll receive excellent care at any of the major centers, though. Glad you're willing and able to go.

[JanW]

I would actually be quite surprised if any of the centers weren't accepting new patients -- it's not all altruistic on their part either because this is where the major researchers in these diseases work and they are always gathering data and the way to get more data is through more patients. I would check with Mark to make sure you are calling the right place, but really you can't go wrong with any of them. My ENT (I'm outside of NYC) likes Cleveland Clinic, but that's because all of his old buddies from NIH went there (he came back home). His mentor Gary Hoffman (now semi-retired) is there.

[alhartzler]

I too was surprised by the response at the Mayo clinic. Again, I can only guess maybe she didn't understand my inquiry. However, I am going to try Cleveland clinic next. My insurance (cobra) runs out very soon, so I am battling that currently. I have already been denied by a major carrier due to the Wegs diagnosis, so I am not sure what I will do next. My parents said they would help with the cost at a center, but I will need insurance for stuff down the road obviously. I have no idea what to do next in that regard. A whole separate issue, but nevertheless extremely important to anyone with a chronic illness. Thanks for all the good information. Anyone have trouble with insurance? Or any ideas about insurance? Any help always appreciated.
Angela

[ArlaMo]

Angela,

Not sure about the insurance - sorry you have to deal with that as well.

But I did want to give a thumbs up to Cleveland Clinic. I called to make an appointment the first week of January and was seen two weeks later. Dr. Carol Langford was wonderful and I also saw an ENT, pulmonologist, had a chest CT, blood labs and lung work-up. All the docs were very familiar with Wegs and it was a huge relief to be seen by people who knew what they were talking about and could answer the majority of my questions.

Also, just a note - sinus issues *can* continue (the crusting, etc.) even after a patient is in medical remission. This is something I learned while out in Cleveland. The ENT out there has a specific nasal regimen he recommends to keep your sinuses from having further damage.

Good luck!! I hope you are able to be seen soon by a Wegs specialist - it was truly worth the trip (I traveled from WA to OH.)

[elephant]

ArlaMo, what is the ENT's nasal regimen for your sinus, I want to know.

[ArlaMo]

Elephant - I saw Dr. Knott while I was out in Cleveland. Under direction of my local ENT (who hasn't had a Wegs patient before, but is the only ENT in town) I was using the Netipot, Pretz spray and a steroid nasal spray. Dr. Knott told me that the Netipot was not aggressive enough for Wegs patients, that Pretz only stayed in the nasal cavities for about 10 minutes and that since I was already on 40mg pred, the additional nasal spray wasn't adding much.

So he has me using mupiricin (comes in a tube) mixed thoroughly with 1 liter of saline. You seriously have to shake the heck out of it to mix it! :blink: If you have a compounding pharmacy, they can do it for you, but I picked it up in Cleveland and was flying home the same day. Didn't think the TSA people would allow me on the plane with that much liquid! Then, I have a 50cc toomey syringe and I irrigate my nose 2-3 times a day with this solution (keep it in the fridge.)

In addition, CCF has a nasal cream that he prescribed. He said you can only get it at CCF pharmacies - not sure what all is in it. I use that on a q-tip four times a day in each nostril.

I have actually noticed quite a difference in the last two weeks - I used to fill a wastebasket with gross, bloody kleenexes every day, but now I am down to one pretty gross blow from each nostril first thing in the morning. Dr. Knott suggested a humidifier, so I'm thinking on that - I get such bad night sweats that I'm not sure I want to add to the humidity right now.

[alhartzler]

Thanks for the warm wishes. It is so great to hear that there are docs who really know what they are doing with this. I am so anxious to be seen by a specialist. I will be traveling from Dallas. Hopefully, I can get in there before anything else goes haywire. This arthritis is really the pits. It literally moves from joint to joint daily, and has really been excruciating lately, making work difficult. I feel like an 80 year old hobbling around sometimes!!! Ocasionally my joints swell, like in my ankles and hands, and turn red and hot. Anyway, I guess lots of people on this site have had the same stuff at one time or another. Just venting. Thanks again.

[alhartzler]

Elephant - I saw Dr. Knott while I was out in Cleveland. Under direction of my local ENT (who hasn't had a Wegs patient before, but is the only ENT in town) I was using the Netipot, Pretz spray and a steroid nasal spray. Dr. Knott told me that the Netipot was not aggressive enough for Wegs patients, that Pretz only stayed in the nasal cavities for about 10 minutes and that since I was already on 40mg pred, the additional nasal spray wasn't adding much.

So he has me using mupiricin (comes in a tube) mixed thoroughly with 1 liter of saline. You seriously have to shake the heck out of it to mix it! :blink: If you have a compounding pharmacy, they can do it for you, but I picked it up in Cleveland and was flying home the same day. Didn't think the TSA people would allow me on the plane with that much liquid! Then, I have a 50cc toomey syringe and I irrigate my nose 2-3 times a day with this solution (keep it in the fridge.)

In addition, CCF has a nasal cream that he prescribed. He said you can only get it at CCF pharmacies - not sure what all is in it. I use that on a q-tip four times a day in each nostril.

I have actually noticed quite a difference in the last two weeks - I used to fill a wastebasket with gross, bloody kleenexes every day, but now I am down to one pretty gross blow from each nostril first thing in the morning. Dr. Knott suggested a humidifier, so I'm thinking on that - I get such bad night sweats that I'm not sure I want to add to the humidity right now.
Oh, this is great info. I do fill a trash can daily with bloody tissues, and I have just been using the nasal wash. I would love to try something different for my sinuses that actually works!!! I feel like my poor nose is just gradually being eaten away. Very disheartening, but glad to hear there is a plan for this. Can't wait to see the ENT there. Thanks for sharing this!!!

[elephant]

Thanks for sharing this too! Much appreciated!

[Psyborg]

Thanks for the warm wishes. It is so great to hear that there are docs who really know what they are doing with this. I am so anxious to be seen by a specialist. I will be traveling from Dallas. Hopefully, I can get in there before anything else goes haywire. This arthritis is really the pits. It literally moves from joint to joint daily, and has really been excruciating lately, making work difficult. I feel like an 80 year old hobbling around sometimes!!! Ocasionally my joints swell, like in my ankles and hands, and turn red and hot. Anyway, I guess lots of people on this site have had the same stuff at one time or another. Just venting. Thanks again.

That pain is very much a sign of active Wegs...that was my primary issue when I was really sick last year. If you call the main desk at Cleveland they will be able to get you in to see one of the doctors for sure. I believe there are direct flights from Dallas to Cleveland as well...at least there are from Dallas to Columbus, and Cleveleand is a Hub for continental so I think it would have more flights available.

[Sangye]

Angela, the most important thing is to get established as a patient at a major center, as you are doing. Getting that done while you still have COBRA means you can get a lot of the upfront testing done there. You'll probably only have to return every few months for follow-ups and they can work with your local docs at home. Many people go to a major center quarterly, twice a year or annually but communicate with their center docs on a regular basis. They understand financial constraints.

[alhartzler]

Ok, thanks. I will be calling tomorrow to see about getting in . Was going to call today, but ended up staying late at work. Such is life. I am pretty concerned now that I am getting worse. Definitely all that is on my mind lately. Will let you know how it goes with getting an appointment.
Angela

[Jaha]

Angela,
You had inquired about info on insurance or assistance with payment for healthcare. Cleveland Clinic has a HCAP program for assistance that is income based, I think you can find it on their website. But for a family unit of one income it can be up to $43,320 per year and for family unit of two it can be up to $58,280 per year. The phone# to check if you qualify is 866-737-4358. I see Dr.Villa-Forte at CC and she is great. Good luck to you and know that you will receive the best of care at CC.
Jana

[alhartzler]

Thanks so much for the insurance info. I will definitely be looking into it. I am going to try to seek private insurance, since cobra is running out. I am wondering if maybe I can get insurance with Obama law yet? Not sure when that goes into effect?

[alhartzler]

Well on another note, I had to go to the ER last night. Was working, and over the course of five or six hours, I developed swelling in right hand and left lower leg, and extreme pain in those joints, along with right foot and right knee. Could barely walk to my car or hold a pen. So, I was put back on the dreaded prednisone, for which I cried, and pain meds. I have not had to take pain meds until now, and have been off prednisone for more than a year. They put me on 40 mg a day, until I can see my rheumy and try to get into Cleveland Center. I will be seeing her on Monday and trying to get all this arranged before my insurance runs out. (Plus trying to obtain new insurance) This is what I was afraid was going to happen, and sure enough it has. They did no testing in the ER, as they had to "research" how to treat me in the first place. I'm actually kind of glad, because I know if I get into Cleveland, they will be doing testing there, so really no need. (Assuming and Hoping there is no underlying kidney stuff going on) So I guess they saved me time and money. Joints are still achy this morning, but not throbbing, so I'm relieved for now.

[Sangye]

Angela, as awful as it is, 40mg of pred is probably the best thing for you right now. It can keep a bit of the Wegs under control and hopefully keep it from running further amok.

I'm assuming they did routine blood work and urinalysis? That would check the kidneys.

As far as insurance, the protections for pre-existing conditions apply to you if you've been uninsured for at least 6 months. In 2014 the protections will apply to everyone, regardless of time uninsured. It's a major problem. To be honest, I don't know how you're going to get insured with a dx of Wegs. (Even if you did, the premium would be outrageous.) It's not only the Wegs which is a huge pre-existing condition, but all the drugs we take predispose us to cancer, etc....

The only Weggies I know who have been able to get a new policy are getting it as an employee. Of course you should definitely try to get insured-- I just wanted you to know this up front so you're not surprised.

[elephant]

Angela, I am so relieved you are going to Cleveland Clinic on Monday. They will check your urine when you get there and order tests that they think is appropriate for you. I wish you the best!

[alhartzler]

I am aware of the insurance problems, and it is so very frustrating. Thanks for your input, however, which is always appreciated. I want to clarify that I have not yet been accepted as a patient at Cleveland, but Monday I see my local rheumy, then am going to try to set my appt from there to the Cleveland clinic. I am hoping that with all my new symptoms, they will see me fairly soon!!! Like hopefully this week, if possible. My mom is going to fly with me. I love my mom! Also, in reply to Sangye, NO they did not do a single test in the ER!!! Not even a urine. They had no idea what to do with me. She had to do some research to come up with the prednisone....along with my knowledge on the subject. I knew that I would probably need some prednisone. How much, I left up to her. But it was a sobering experience to put it lightly. The pain medicine was very helpful, and the prednisone has worked miracles overnight, as I am almost back to completely pain free and edema free. Thank goodness!!! Have no idea about lung or kidney function at this point. Am praying nothing going on there. We shall see soon.:unsure::unsure:

[Sangye]

Grrr. I can't believe they didn't do basic labs. How utterly incompetent!

In the future, whenever you go to the ER for anything that could possibly be related to Wegs (ie, anything other than a tree branch jutting out from your chest) make sure they do basic blood work and a urinalysis. Any other test beyond that may or may not be necessary. But basic blood work and urine is always necessary.

[Hal]

Hello Angela,

Gosh, I hope you are successful getting evaluated soon by the Cleveland Clinic. Your symptoms sound like they really are progressing rapidly now, and you need to address the root cause asap. The Prednisone is acting like an anti-inflammatory (I think), treating the "symptoms" only, not not the actual disease. As Sangye mentioned, hopefully it will keep it from running amok and doing damage to your body.

I am guessing you will need to start Cytoxan for 4-6 months to get the Wegs under control properly. I consider myself a textbook-Wegs-case, and my treatment plan is generally in this patient-information sheet my Rheumatologist gave me, whilst I was in hospital last year.

Patient Education - Wegener's Granulomatosis (http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/wegeners.asp)

Also, has you doctor done an ANCA blood test, or is she doing the test regularly to monitor your condition? If not you should insist on it. In my treatment plan, I am currently getting my bloodwork done weekly for the next period of time, and when I went on Friday the ANCA test was one of those I had done.

ANCA Test | Vasculitis Foundation (http://www.vasculitisfoundation.org/ANCAtest)

If your doctor is not familiar with Wegs, as you suggest, then perhaps you should print out those documents and brings them with you, if they are new-to-you.

Good luck now... Hal.

[alhartzler]

Thanks Sangye and Hal, (and all)
I feel pretty good today, and know it's the prednisone. I am counting down the minutes until I can get the ball rolling tomorrow. (Monday) I had an appt scheduled for next Friday with my rheumy, but am going to insist on being seen tomorrow. I'm pretty sure she will see me. And then go from there with Cleveland center. I called them on Saturday, but Monday is a holiday, so can't schedule appt until Tuesday, but at least my information is in their system. My local rheumy does always do blood and urine, including ANCA panel. So, she is good in that sense. I just think she falls short, because she leaves too much up to me to decide, which I read from you and others is a red flag. So, I don't think she really has dealt with enough cases to feel confident with her own decisions in my care. I need someone to tell me what they think would be best because they have expertise in the area. (sorry for sounding redundant) I'm sure everyone feels this way at some point in their treatment. Anyway, Monday will be a busy day for me.
Angela

[alhartzler]

Hal,
Thanks for the informative links! I appreciate it. Look forward to getting seen at Cleveland.

[Palmyra]

I too was surprised by the response at the Mayo clinic. Again, I can only guess maybe she didn't understand my inquiry. However, I am going to try Cleveland clinic next. My insurance (cobra) runs out very soon, so I am battling that currently. I have already been denied by a major carrier due to the Wegs diagnosis, so I am not sure what I will do next. My parents said they would help with the cost at a center, but I will need insurance for stuff down the road obviously. I have no idea what to do next in that regard. A whole separate issue, but nevertheless extremely important to anyone with a chronic illness. Thanks for all the good information. Anyone have trouble with insurance? Or any ideas about insurance? Any help always appreciated.
Angela

Angela, you are in Texas, correct? Before that cobra runs out, you should look into the Texas High Risk Health Pool. It is administered by Blue Cross Blue Shield. They do not deny based on pre-existing condition, in fact, that is why it was created. It covers my daughter's out of state visits to Mayo. Premiums are high, but dependent on zip code. Live in a high end area? Then you pay more for premiums. The coverage is very good.

[alhartzler]

Thanks so much for the information on the insurance Palmyra! I will look into that tomorrow for sure. This web site is such a great resource and support system!!! Thanks again
Angela

[alhartzler]

Try Cleveland Clinic...As far as I know they've always accepted anyone contacting them.

Hey all,
Just found out today I will be seeing Dr. Carol Langford at Cleveland clinic on Thursday, the 24th. Very excited they got me in so quickly! I am thankiful for all the posts and advice. My rheumatologist decreased prednisone to 20 mg, then referred my care to Cleveland docs. Will post how my experience goes there.
Angela

[Psyborg]

That is great news...keep us updated on how it goes.

[elephant]

I am so excited for you, can't wait to hear back about your trip to see Dr Langford! Yahoo!

[alhartzler]

Thanks guys! I hope it all goes well. At least I know I'll be in good hands there. (not that i don't like my local rheumy, she is very nice, and was very receptive to the idea of getting consultation there-- just think she hadn't had enough experience with this, like so many others)

[Sangye]

Yay, Angela-- wonderful news. I'm so happy you're going to CC.

[alhartzler]

Hey guys. Well I saw dr Langford and two of her colleagues today. Found out I do have kidney involvement, and will find out to what extent tomorrow. She raised prednisone dose to 60mg per day, and says I will need to start cytoxan or rituximab. Will need to decide tomorrow. Lung CT was negative. Was quite surprised about the kidneys. Anyhow, now need to figure out if insurance will cover rituximab, and then make a decision. I may start infusions here. This is what she suggested if I choose rituximab. Just wanted to update everyone.

[Psyborg]

Thank goodness you were able to get to a specialist.

[Sangye]

I'm hugely relieved you're at CC. :thumbsup:

[elephant]

I am so gald too that your are with Dr Langford and she will take good care of you. Your going to be alright!

[alhartzler]

Well I started Cytoxan yesterday morning. I'm wondering how long before I will know if/how I'm going to tolerate this drug. So far no major problems, just some stomach upset, but not severe. Drinking tons of water. Also wondering if I'll be able to go back into a surgical/inpatient hospital environment for work while taking these drugs. Doc said would be a high risk. I just don't know how to make that decision. Wondering if anyone has any input. Anyway, so far doing ok. Any experience or input on things that I may expect with this regimen would be welcome. I've done the associated reading on general information about the drugs so far. But, it always helps to hear other people's personal experiences and opinions. Thanks for all the warm wishes.
Angela

[Hal]

Hi Angela, here were my instructions on the Cytoxan, some of which you already know I am thinking:

1) Drink 2 litres of liquids per day. I started by measuring 2 litres of water in a jug, and anytime I took a drink of water, juice, coffee, tea, soup etc deducted it from the jug. After a while I was able to judge how much I should be drinking. My general rule of thumb evolved into "pee, then refill !" Basically, do not make it a chore.

2) Virutally all my doctors told me I would be at a higher risk of infection, as the Ctx took affect and lowered the white blood cell counts. They told me that at any sign of a sniffle from a potential infection/cold, to head immediately to the doctor or the ER, as patients in this condition could potentially deteriorate quickly if an infection took hold. My family doctor told me to "stay out of circulation", which I have been doing. I would tend to heed that advice...

3) I personally had minimal side effects. Some mornings the stomach was upset for a little while, and after several months my hair got patchy, but that needs to be taken in context since I am 50 years old and it was slowly going regardless... probably hastened things a tad ... (grin).... time will tell if it now thickens up on the sides again.

I am curious what others have to say as well.... but it is a good thing overall to be taking the CTX.

Hal.

[coffeelover]

Welcome Angela,

The Mayo is a great place to get a weg/ent doctor....but it may take 3 months to get in. So try to get your doc to make that referral asap. The sooner you get help the better.
This is a good forum and remember, no questions are bad questions.
Lisa (coffeelover)

[Sangye]

I didn't feel anything for the first couple weeks, then it was like the floor fell out. I got extremely weak and weaker by the day. It continued like that for 7-8 months when I was transitioned onto mtx.

I don't agree that you should count other liquids towards the 2 liters. Particularly anything containing salt, as that will cause you to retain fluid instead of peeing it out. Nothing is as effective as water as far as clearing out the ctx. Also, I was told to pee at the first hint of anything in the bladder. You don't want ctx sitting in there at all. Hopefully you're taking all your ctx in the morning so it doesn't sit in your bladder overnight.

[alhartzler]

Well I'm glad for the responses thus far. I was told to drink lots of water, but no one mentioned 2 liters. My form just said at least 8, 8oz glasses of water per day or more. I drank 6, 16 oz bottles yesterday. I am taking the cytoxan in the morning as suggested. I'm slowly trying to come to grips with having to be out of my work/clinical setting for a couple of months. This will put me way behind my class for graduation, but I know the risk would be high with all the sick patients I would be exposed to. I guess I'm just kind of wondering if there would be any "acceptable" white count level that might allow me to be in a clinical environment??? If that doesn't sound silly. I don't think the doctor was willing to state that it would be safe under any circumstances. So, I'm just going to have to make the decision on my own really. This Wegener's has VERY BAD TIMING! Guess I'll stop whining for now. Thanks for the input everyone.

[ArlaMo]

I started on Ctx last April - initially had some nausea but that calmed down after a few weeks. I did lose quite a bit of hair - big bald patches - so I ended up shaving it pretty short and wore cute hats my mom made for awhile. Definitely tired and lots less energy than before - I have to be careful of my to-do lists getting overwhelming...and not feeling guilty when I just need a nap. I drink about a gallon of water a day to keep the ctx flushed through my system - that was the recommended amount I was given when I started (200mg ctx daily.)

As far as the exposure, I would be as careful as you can. That said, I have six children and they bring home every germ imaginable! I couldn't really stay away from them while being treated :wink1: I wore a mask for awhile when going out, especially to church or the kids' schools, but that got to be a pain and I don't anymore. I've been pretty lucky as far as other illnesses go - a couple of bad ones this winter, but I decided as a mom, I couldn't live my life in a bubble and I just deal with whatever comes.

[alhartzler]

On a sidenote:
I wanted to post about my experience at the Cleveland Clinic. On my first visit, I saw 2 of Dr. Langford's fellows, who did a very thorough health history, which took an hour and a half. They went through every piece of health information that I brought with me, which included an entire packet of health records from the beginning of my diagnosis until present. (All ENT and Rheumatologist records and labs/biopsies) Then, they did a very thorough physical examination, and I gave a urine specimen. After all that, I met with Dr. Langford who also reviewed my health history, which had been input into the computer by then, and her own physical examination. She then discussed the fact that I had casts in my urine, along with protein, and wanted me to have blood tests done to show extent of kidney involvement, as well as look at the rest of my blood work/ liver function, weg's tests, etc. All the standard labs Wegener's patients normally have, with some additions. She then discussed my options and recommendations for cytoxan and rituximab. I also had a CT of my chest done, which showed some scattered small nodules. She and her fellows called me back the next morning to see her, where we discussed my labs and the drugs in detail. She then did a repeat urine test, and once again confirmed casts in the urine. We eventually settled on cytoxan due to insurance reasons, and she wrote all the necessary prescriptions, etc. I will follow up with her sometime in the future, along with my local rheumatologist and ENT. She also put me on a nasal regimen. Overall, I was very pleased with my visit to Cleveland Clinic. Everything was so efficient and very fast. (testing, labs, office wait, etc.) They were extremely thorough and informative. Thanks to everyone who recommended I be seen there. I was quite surprised by the kidney involvement, and so thankful they were able to see me quickly. I would highly recommend Cleveland Clinic to any other Wegs patient. I'm sure the other vasculitis centers are equally just as great!

[marta]

Hey Angela,

Glad you're on the heavy hitter. At least things can start moving in a positive direction now. I found that when I first started taking the drugs, they would knock me out for a few hours each day as my body was getting used to them. My GP at the time told me that they shouldn't be doing that, but she didn't tell the drugs or my body that because I was still getting knocked out each day. I liked it though, as it gave me a much needed solid nap each day. Eventually the pred took over and no more naps, no more getting knocked out. My body got used to it within a couple of weeks. I also increased my cytox by 50% this January and again felt a little whomped for the first week or so, but then it goes back to normal for me.

Yes, lots of water. I wasn't a big water drinker before, but boy oh boy I am now.

I also have a four year old at home who goes to the petry dish known as pre-school, so I'm always a little afraid of what's going to come home with her. We have disinfectant gel bottles all over our house, and all of our hands are dry and cracking from all of the washing we do. I too keep a low profile these days, which is OK because I want to keep my pred moon face outta sight.

Take care, best of luck, and a quick remission.

By the way, Wegener's always has bad timing. Ask anyone on here. I feel the same way.

[alhartzler]

:rolleyes1:
I started on Ctx last April - initially had some nausea but that calmed down after a few weeks. I did lose quite a bit of hair - big bald patches - so I ended up shaving it pretty short and wore cute hats my mom made for awhile. Definitely tired and lots less energy than before - I have to be careful of my to-do lists getting overwhelming...and not feeling guilty when I just need a nap. I drink about a gallon of water a day to keep the ctx flushed through my system - that was the recommended amount I was given when I started (200mg ctx daily.)

As far as the exposure, I would be as careful as you can. That said, I have six children and they bring home every germ imaginable! I couldn't really stay away from them while being treated :wink1: I wore a mask for awhile when going out, especially to church or the kids' schools, but that got to be a pain and I don't anymore. I've been pretty lucky as far as other illnesses go - a couple of bad ones this winter, but I decided as a mom, I couldn't live my life in a bubble and I just deal with whatever comes.

Wow, and I thought 3 kids was alot! Good for you on staying healthy and active! Yes, I will play it by ear for now on making a decision on work. Thanks for the info on water and your experiences with hair loss. Not looking forward to that. But I have to keep reminding myself that it's all better than going into kidney failure!!! So, I'm gonna try to keep as positive an outlook as I can. I feel as you do about living life in a bubble--I just have too much to do for that! I will be careful, but not to the extent that I shut myself off completely from some sense of a normal life. I may have to stay out of the O.R. for a while, but that can wait. At least I can still be active with my family life. Thanks again for sharing your story and experiences. :rolleyes1:

[alhartzler]

Hey Angela,

Glad you're on the heavy hitter. At least things can start moving in a positive direction now. I found that when I first started taking the drugs, they would knock me out for a few hours each day as my body was getting used to them. My GP at the time told me that they shouldn't be doing that, but she didn't tell the drugs or my body that because I was still getting knocked out each day. I liked it though, as it gave me a much needed solid nap each day. Eventually the pred took over and no more naps, no more getting knocked out. My body got used to it within a couple of weeks. I also increased my cytox by 50% this January and again felt a little whomped for the first week or so, but then it goes back to normal for me.

Yes, lots of water. I wasn't a big water drinker before, but boy oh boy I am now.

I also have a four year old at home who goes to the petry dish known as pre-school, so I'm always a little afraid of what's going to come home with her. We have disinfectant gel bottles all over our house, and all of our hands are dry and cracking from all of the washing we do. I too keep a low profile these days, which is OK because I want to keep my pred moon face outta sight.

Take care, best of luck, and a quick remission.

By the way, Wegener's always has bad timing. Ask anyone on here. I feel the same way.

Thanks Marta,
I hope this puts me into remission quickly. And, after I write stuff, I think about how silly it sometimes sounds. Like bad timing. There is NEVER any GOOD timing with a disease such as Wegener's or any other. But, I get carried away with my thoughts and venting, etc. as I'm sure everyone does from time to time. Yes, I'm not looking forward to the puffy face again either. My face puffed up like a balloon the last time I was on prednisone. And now, I'm at an all-time high dose personally, at 60 mg per day. I really despise prednisone, as I'm sure everyone else does too. Is there ANYTHING I can do to prevent the weight gain with this stuff???? Frustrating. Good to hear your thoughts. I hope you also can get off all this toxic stuff once and for all, and achieve a long-lasting remission!!!

[ArlaMo]

Angela,

This was a helpful book Amazon.com: Coping with Prednisone, Revised and Updated: (*and Other Cortisone-Related Medicines) (9780312375607): Eugenia Zukerman, Dr. Julie R. Ingelfinger M.D.: Books (http://www.amazon.com/Coping-Prednisone-Revised-Updated-Cortisone-Related/dp/0312375603/ref=pd_sim_b_1)

I wish I had known more about the effects of pred when I first started on it. My (ex) Reumy told me almost nothing and I was a little unprepared going into it. Gained quite a bit of weight - ugh! I've also picked up a couple of anti-inflammation diet books, which have also been helpful. AVOID the salt! :wink1:

[alhartzler]

Thanks, I will check into the book on prednisone. Hadn't really even thought of looking for a book on prednisone?! But what a great idea. Especially since it looks like I'll be on it for a while. Will also look into the diets on inflammation. Thanks again.

[Sangye]

Ditto to ArlaMo's book suggestion. I never knew anything about pred weight gain before it happened, either and I didn't have good internet access back then. Salt and sugar are the big no-no's.

I don't know how all of you folks with kids do it. I can barely manage with two dogs and a little bird. Kudos to you. :thumbsup:

[marta]

Thanks Marta,
I hope this puts me into remission quickly. And, after I write stuff, I think about how silly it sometimes sounds. Like bad timing. There is NEVER any GOOD timing with a disease such as Wegener's or any other. But, I get carried away with my thoughts and venting, etc. as I'm sure everyone does from time to time. Yes, I'm not looking forward to the puffy face again either. My face puffed up like a balloon the last time I was on prednisone. And now, I'm at an all-time high dose personally, at 60 mg per day. I really despise prednisone, as I'm sure everyone else does too. Is there ANYTHING I can do to prevent the weight gain with this stuff???? Frustrating. Good to hear your thoughts. I hope you also can get off all this toxic stuff once and for all, and achieve a long-lasting remission!!!

Angela, not to worry. I write train of thought style, without ever really going back and checking out if what I wrote makes sense... which is why I often cringe when I read some of my posts. Thoughts like - " I hope I didn't offend someone " , "Oh, that can be interpreted about five different ways", "Man do I sound like a goober" - often go through my head as I re-read posts that I have already allowed to 'go live'. I just wanted to let you know that we all feel that feeling of 'Why now, Wegener's?' and let you know you're not alone in feeling that.

After reading some of the other posts on here, I should mention that when I say I'm back to normal, I mean Weggie normal, not pre diagnosis normal (as far as energy goes). Pre diagnosis I could do a lot of things, now I go to the ski hill and do a few runs with my little girl - here we are skiing a couple of days ago (I'm the one in the green jacket constantly hoovering behind her) YouTube - TheJasperlife's Channel (http://www.youtube.com/user/TheJasperlife?feature=mhum#p/a/u/0/XId_dillfek) but can't do a full day of skiing the bumps and bowls like I use to. Oh yeah, my hair is quite the joke too. I call it 'my three hairs', but oh well, at least I get to hang out with my beautiful family, so all is good.

[drz]

Angela, not to worry. I write train of thought style, without ever really going back and checking out if what I wrote makes sense... which is why I often cringe when I read some of my posts. Thoughts like - " I hope I didn't offend someone " , "Oh, that can be interpreted about five different ways", "Man do I sound like a goober" - often go through my head as I re-read posts that I have already allowed to 'go live'. I just wanted to let you know that we all feel that feeling of 'Why now, Wegener's?' and let you know you're not alone in feeling that.

After reading some of the other posts on here, I should mention that when I say I'm back to normal, I mean Weggie normal, not pre diagnosis normal (as far as energy goes). Pre diagnosis I could do a lot of things, now I go to the ski hill and do a few runs with my little girl - here we are skiing a couple of days ago (I'm the one in the green jacket constantly hoovering behind her) YouTube - TheJasperlife's Channel (http://www.youtube.com/user/TheJasperlife?feature=mhum#p/a/u/0/XId_dillfek) but can't do a full day of skiing the bumps and bowls like I use to. Oh yeah, my hair is quite the joke too. I call it 'my three hairs', but oh well, at least I get to hang out with my beautiful family, so all is good.

The little girl seems like a good skier. No falls! How old is she? Looks like nice ski area and lots of fun.

[marta]

Hey drz,

She just started skiing off the leash - the video was taken on her third time skiing solo (i.e. without one of us holding the leash). We're beaming proud parents.
She's four.
Yeah it is a beautiful ski area. One of my fave places in the world. I absolutely love spending my time up there. It's almost a spiritual experience for me.

[snooz23]

Angela,
Glad to hear your Cleveland visit was a success. I hope you rec'd my other private message responses to your questions....I wasn't sure if I did it right?

Sounds like you have a good plan and am happy you went straight to the specialist....so much time can be wasted and incredible amounts of damage done to our bodies messing around w/ docs who don't know what to do with us (unfortunately much of my hearing is gone due to this fact). I was also on CTX last year and did not experience a whole lot of problems w/ it while I was on it, however when I view pics of myself from that time...I appear rather deathly and I think my family was quite worried. Quite a lot of hair was lost, luckily I had a lot to loose. I have also been a lucky one who has not gained a lot of weight on pred. ( I have been on 60mg a day, 3 separate times over the last 1.5 years)....actually since dx I have lost weight. This is due to the fact I completely changed my diet....I have been gluten-free, whole, fresh foods for almost 2 years (don't get me wrong I still indulge in desserts, wine, chips, etc. every now and again).

Good luck and keep us posted. Cheers~ Suzanne

[marta]

This is so good to hear Suzanne. I too can't stand pics of myself right now. It's not only the distorted pred face, but also that deathly look, it's quite disturbing.

Are you following any particular diet or just omitting said foods. I eat pretty clean, and cook everything from scratch, and have only gained an extra 15lbs above my normal weight, but it sure has done a number on my body appearance/distribution wise. I'm hoping that once I get the rtx, I might have more energy and can start doing some exercise that will strengthen and shed some of the unwanted evil I've accumulated over the last 10ish months.

[alhartzler]

Angela,
Glad to hear your Cleveland visit was a success. I hope you rec'd my other private message responses to your questions....I wasn't sure if I did it right?

Sounds like you have a good plan and am happy you went straight to the specialist....so much time can be wasted and incredible amounts of damage done to our bodies messing around w/ docs who don't know what to do with us (unfortunately much of my hearing is gone due to this fact). I was also on CTX last year and did not experience a whole lot of problems w/ it while I was on it, however when I view pics of myself from that time...I appear rather deathly and I think my family was quite worried. Quite a lot of hair was lost, luckily I had a lot to loose. I have also been a lucky one who has not gained a lot of weight on pred. ( I have been on 60mg a day, 3 separate times over the last 1.5 years)....actually since dx I have lost weight. This is due to the fact I completely changed my diet....I have been gluten-free, whole, fresh foods for almost 2 years (don't get me wrong I still indulge in desserts, wine, chips, etc. every now and again).

Good luck and keep us posted. Cheers~ Suzanne

Hi Suzanne,
I will look into the private messages. I am not sure if I received, and am so sorry I have not yet responded if I did! I am seriously thinking about changing my entire way of eating. I'll have to do something to keep the weight down for sure. I'm already feeling bloated after only being on it for a week. Thanks for your warm wishes. I will be in touch, and check on those messages.
Angela

[alhartzler]

Angela, not to worry. I write train of thought style, without ever really going back and checking out if what I wrote makes sense... which is why I often cringe when I read some of my posts. Thoughts like - " I hope I didn't offend someone " , "Oh, that can be interpreted about five different ways", "Man do I sound like a goober" - often go through my head as I re-read posts that I have already allowed to 'go live'. I just wanted to let you know that we all feel that feeling of 'Why now, Wegener's?' and let you know you're not alone in feeling that.

After reading some of the other posts on here, I should mention that when I say I'm back to normal, I mean Weggie normal, not pre diagnosis normal (as far as energy goes). Pre diagnosis I could do a lot of things, now I go to the ski hill and do a few runs with my little girl - here we are skiing a couple of days ago (I'm the one in the green jacket constantly hoovering behind her) YouTube - TheJasperlife's Channel (http://www.youtube.com/user/TheJasperlife?feature=mhum#p/a/u/0/XId_dillfek) but can't do a full day of skiing the bumps and bowls like I use to. Oh yeah, my hair is quite the joke too. I call it 'my three hairs', but oh well, at least I get to hang out with my beautiful family, so all is good.

Thanks for the reassurance on my posting. I appreciate so much knowing that I am not alone in all my thoughts, doubts, frustrations, etc. I really thank everyone for sharing their stories. I think it's great you can still ski, and enjoy some normalcy, especially with your family. Regarding hair, I'm waiting on mine to fall out.....BooHoo. Hope it doesn't happen, but had some hair loss with methotrexate the first go around, so I've got a sneaky suspicion it'll happen with CTX too. Keep in touch. Love to hear from everyone.

[alhartzler]

Just an update. I've been on the CTX for almost 2 weeks now. Not any major problems so far, just increasingly more tired than usual, and a little nausea off and on. Drinking tons of water. Can't really complain too much. Here's the greatest news though.....My nose miraculously seems to be getting a little better for the first time since diagnosis. I am not having near as much crusting or spontaneous bleeding. My sense of smell even seems to be improving. I am ecstatic! Can this be a result of the cytoxan already? I didn't expect that really. I just hope I can stay infection free and that my lab work stays ok. Anyway, hope all my fellow weggies are doing well out there.

[Sangye]

Angela, that is great to hear! :smile1:

[alhartzler]

Sangye, Yes, thank you. I am wondering if it's cytoxan or prednisone, or a combination? I am just so happy that the nose seems to be improving. I hope you are well also. Thanks for noticing my small victory, even if it may be short-lived?!
Angela

[Sangye]

It's probably mostly due to the pred at this point. As you get closer to 4 wks the ctx starts to kick in more. Rather than it being a short-lived thing, it bodes well for you that you are having good improvement so soon.

[alhartzler]

Sangye, I am also hoping it means I am responding well and will continue to respond well. Had some nose bleeding today, but still minimal as compared to in the past. Had labs today, so will see how things are looking hopefully by Friday. Today, my chest feels a little heavy and tight. I'm not sure what this is all about?? I had some small granulomas on my lung CT a few weeks ago when I went to CC. Very small, and was just told I would need another CT in about 2 months to compare. But, I never felt anything abnormal with my breathing/respiratory. So, I'm kind of baffled by this, as this is somewhat a new thing. I have had asthma in the past, mainly as a child, but this is different. I can kind of hear it in my voice also, if that makes sense. I guess if this persists, it will be back to the doctor I go. How are you?

[Sangye]

Angela, please call your doctor today about the new lung symptoms. It's very easy to develop lung infections while on ctx, and pred masks symptoms like fever.

[alhartzler]

Thanks. Chest feels better this morning. I should correct myself also, that when I went to CC I did feel a little different in the chest, but not quite as heavy or tight. Anyway, if this persists beyond today, I am going to head back to my rheumy. Thanks for bringing that to my attention.

[alhartzler]

Well, guess I have ear and sinus infection, with fluid in my "bad" ear. So, this stinks. I didn't really even know I had anything going on, but I'm on such a high dose of prednisone, doc says it is masking S&S. Another antibiotic to add to the mass quantities of drugs I am already taking on a daily basis! BOOOO!!! And, the latest great thing is some diarrhea. Saw my Rheumy today, and got some cheaper sleep medication. The prednisone is doing all the bad things that it does. Also, still having sporadic and sometimes severe joint pain. Last night couldn't use my right hand. Saturday, it was my left knee. Doc says that Cytoxan hasn't had enough time to put me in remission yet. Obviously. Guess I knew that. So, have to be home another week, which is just another delay in getting back to my school/work, but I realize this is really secondary to my health, of course. I'm rambling. Hope all are doing well out there. I know there are always those who are worse off than me, so I should stop complaining. Bad day.

[pberggren1]

It is good to vent now and then. I believe it is therapeutic. So please feel free to do so whenever you want alhartzler.

[Psyborg]

Definitely are days where venting is needed. I hope things improve for you soon. The CTX does take about a month before any real differences start to be discernible.

[alhartzler]

Thanks to Bob and pberggren1. I really think this site is good for our Weg souls! Other people who understand the unique frustrations that come with all this. Not even my family can really understand like those on this site, even though I know they really try.
Angela

[pberggren1]

You are very welcome Angela. It is hard for others to understand because they have not gone through something similar.