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elephant
01-13-2010, 10:10 AM
Got this idea from Sangye, because many of us are heading toward remission, it's sometimes not so smooth. So I feel that I am not in remission just walking toward the light ( remission).
Today I feel ok, but still a lttle stuffy. Just a tinge of blood when a blew my nose, but that can be from our dry house and the Veramyst spary. So I decided if this stuffiness does not go away in a week, I will be calling my Rheumatologist and get her opinion and even call Carol Langford if I feel I have too. I just don't want to put this off, because I can easily keep making up excuses ( denial).
Please feel free to write your thoughts on your progress. Again we are all in this together. :)

pberggren1
01-13-2010, 10:21 AM
I know what you mean about excuses and denial. And don't hesitate to call Carol if you are able to do that. She is one of the best in the world with WG.

elephant
01-13-2010, 12:11 PM
Thanks, hope your feeling better.

Sangye
01-13-2010, 03:32 PM
Elephant, what are your usual symptoms that tell you the Wegs is on the rise?

I've found that if I list them and then give each one a score (1-10) for severity at this moment, it's a great way to bypass the denial and uncertainty and get a more objective sense.

I started lowering my pred a week ago by 1/2 mg. I've been on 4 mg/day for months and planned to drop 1 mg/month. My gut said to try 1/2 mg first and see how it goes. I've developed some symptoms that concern me, but I also got overexhausted the past several days--that could cause the symptoms, too. I'm trying to decide if I should stay at 3.5 mg and rest for a few days before re-evaluating, or bump it back up to 4 mg.

Here's my scoring for my early "tell" symptoms. (These aren't all my symptoms, just the ones that indicate active Wegs for me)

0=none, 10= worst possible

Joint pain outright= 3
Joint pain following activity= 3-4
Joint pain at night=0
General stiffness=3
Pain in thumb and 1st finger= 0
Fatigue unimproved by resting=2
Extreme fatigue/weakness=0
Low grade fevers=0
Sweats=0
Blood streaks from nose= 1
Vasculitis rash=1
Insomnia=0
Fluid in ear=0

14 points out of 130 possible: Okay so my decision is easy-- stay at 3.5 mg, rest and re-evaluate in a few days

Some of those symptoms seemed bigger in my head, but when I went to score them, I realized they weren't as bad as I thought.

elephant
01-13-2010, 10:32 PM
Thank you Sangye for the, " Wegeners score symptom list". That is exactly what I do for my body scan except the answers are either " yes or no" I like your point system.
What does a vasculitis rash look like for you?
My symptoms when I had the big flare in March 2009 ( water in ears, hearing loss in that ear, fatigue, sinus pain, feeling terrible), then it went from bad to worse, which lead me to the ER and being admitted.
I read Carol Langford notes and she stated that it may be hard for me to go below 5 mg of prednisone secondary to my sinus/lung involvement. I will do the 4 1/2 mg of prednisone starting in Feb. I am hoping the veramyst will help me in that respect. I am monitorin myself very closely right now. Sangye when do you cellcept?

Sangye
01-14-2010, 02:05 AM
The scoring part is new to me, too. I actually discovered it on a financial info website--useful for making objective decisions when there are emotions involved. There's something about focusing on the individual score that puts it in perspective. Also, if one symptom is the BIG "tell" you can give it more weight in the final calculation.

We're planning to restart Cellcept (at 3,000 mg--max dose) when the rtx has gotten the Wegs under full control. The plan is to repeat a month of rtx in the spring and when the B cells begin to recover, go back on Cellcept. I'd like to think that the rtx will work so well that I won't need Cellcept to maintain a remission, but I'm okay with being on it if necessary. I JUST WANT REMISSION. (For Pete's sake)

elephant
01-14-2010, 05:09 AM
ME TOO! I have a question for you, when your done with the rtx, how do you know that it worked so well that you won't need Cellcept?

Sangye
01-14-2010, 07:37 AM
I'm not sure. I imagine I'd be feeling so good we'd just try decreasing the dose? I'm having a hard time picturing feeling even close to good that this is just pure speculation.

elephant
01-14-2010, 08:38 AM
This rtx is going to work for you Sangye, you will just have to try the Cellcept out and most likely decrease the Cellcept very slowly , by tricking the WG. We are all a bunch of fighters. so we are going to beat this WG! :)

Barbara1966
01-14-2010, 11:24 AM
It’s been 6 months from the date I was diagnosed with WG (I was diagnosed pretty quickly-the problem started in middle of May and I was diagnosed in August). For all of these months I do not see the light on the end of the tunnel. It’s been a rollercoaster from day one, when the prednisone dosage was decreased to 35 mg, every thing just went down hill. I was not able to climb 12 steps without stopping in the middle of the staircase and needing to relax, not able to walk around whole grocery store without getting out of breath. From the middle of the December when prednisone was increased to 60 mg and cytoxon changed to 150 oral, I felt much better, I did have 17 great days, but then last Friday I ended up in the ER for difficulty of breathing, every breath was so painful even talking was difficult and I was scared of having an infection. The Ct-scan and X-ray came out clear, no infection, or inflammation they just gave me pain killers and after 5 hours sent me home. Today is a good day.

On top of that I got approved for long time disability and yesterday I went to my work place (that I worked for 15 years) and cleaned up my desk. I was heart broken after all these years but I need to do what was right, I didn’t want them to call me and ask to clean it, I want do it myself, on my terms.

Do I ever gone be able return to work??????? Why am I not responding to the treatment quicker like others are? I follow every doctor order, my medication taken exactly to the minute, every blood work done exactly same day of the week. I still cannot get there. I’m very discouraged and disappointed right now.

Barb

elephant
01-14-2010, 11:43 AM
Barb, I'm sorry you are feeling discouraged. It is a fight all the way to get doctors to listen to us and getting the right care by the right doctors. We all know that we need WG specialist to help us navigate through this difficult climb. When you stated that the cytoxan is not working, maybe the same medicine Sangye is taking would be better. It is called Ritixbum(sp). Ask your Rheumatologist about it, it's a very promising drug and it really helps WG patients get into remission.
Barb when you went to the ER did they check for blood clots in the lungs? They do a special CT scan of your lungs to check for blood clots. Shortness of breath and pain when you breath is a symptom of blood clot in lungs. The pain medicine will mask these symptoms. Keep an eye on that. Don't want to scare you, because you might not have this, but just want you to keep an eye out.
Keep your chin up Barb, you will get there. Really, you will see the light. All of us on this forum will help and give you advice and support. Let us know how you are doing tomorrow.

jola57
01-14-2010, 12:11 PM
Barb there are no easy answers, we each experience similar yet different symptoms. Same goes for getting better, for some it is relatively fast but for others it is slow. Bad news - rarely does anyone get back to where they were before wegs, good news - you will get to your" new normal" soon and hopefuly will be able to get back to work. I got sick in November, was misdiagnosed and given very low steroids for 3 months, and cyclo for 6 months, before I could go on the maintenance drug methotrexate, I started spitting blood, my rheumy wanted to make sure it was not an infection and waited for 3 months before giving me cyclo for 1 year. I am now on mtx for 4 months and 9mg pred. I had similar joint pain, hard breathing, but also peripheral neuropathy (can't feel my feet) hearing loss of up to 75% among others. I consider myself lucky, I went back to work that late January and have worked ever since. Even though I have my own company, I do not abuse time off too much and work just as hard. It has its ups and downs but most people understand and seem to accept me as I am now. I do not k now what you do but maybe work share or part time would be available or even work from home. I started to feel better by May (5 months from start of treatment), so you should be getting there.
Sending you this video to cheer you up. Doug this one is for you as well.
Sympatico.ca Video - Talking Cat Drinks Milk From A Spoon (http://en.video.sympatico.ca/index.php/en/video/Entertainment/2/more-entertainment/35814922001/stupid-videos/34593261001/talking-cat-drinks-milk-from-a-spoon/57966458001)

Sangye
01-14-2010, 03:39 PM
Barb, I can really sympathize with you. I've never been in remission since being dx'ed in mid 2006 (after a year of excruciating pain and weakness)-- not even close. I've never been able to work again at anything, much less my beloved profession. I finally climbed a flight of stairs last month-- after not being able to even go up 2 steps in 3.5 yrs.

The pain, weakness and a gazillion other symptoms and complications have been relentless for so long that I actually can't even picture being strong again. But even so, there's a tiny piece of my mind that believes it's possible and that it's coming soon.

I don't remember if you see a Wegs specialist. That may be the problem. You may need better treatment and someone who really understands the drugs. Meanwhile, let's not give up, okay?

I agree with Elephant that they need to rule out a blood clot in the lungs. You can call the facility that did your CT and ask if they did a "pulmonary angiogram" CT--that's the kind to look for clots. If not, please call your doctor asap and request one. Tell your doctor Weggies have a 23% higher risk of clots--famous research study.

Take good care.

Cindy M
01-14-2010, 05:54 PM
Hi, I haven't been on for a long time, can't remember when the last time was. I have put my house up for sale in the fall and sold it in the middle of November. I have to be out by Jan 21st. I don't mean to come on this site just to complain but I wish at times my family could really understand what I am going through. I have been getting some help with the packing and everything, it's just the snide comments and looks I get that really have me upset. I am still suffering with a number of symptons from WG and they just don't seem to understand that if I push myself one day t he next day I am pretty much out of commission. I am still on 40 mgs of preds and 30 mgs of cyclo. I also did the retuxin IV in August, I am feeling better than I was during the summer but after pushing myself with the packing I am completely exhausted. I think when they see me feeling a little better they think everything is alright. I have been getting more bleeding in the nose, stuffiness, I am sore and stiff. I have been living in this house of about 16 plus years, my husband died 10 years ago when my daughters were 9 and 10, I took a secretarial course after my husbands death to get a decent job to raise my daughters so needless to say alot of things like their school papers, bills, you name it was just boxed and put away because I didn't have the time or desire to go through it. I felt it was more important to spend time with my daughters, taking them to there sporting events, movies etc. So now I have tons of garbage and goodwill items to get rid of and have been doing this. But it just seems like they expect me to have everything done as quickly as they can and I just can't work that way. Tonight my mom (who has been great throughout this) made some comments, I don't know if I am just more touchy and tired but I just wanted to hang up. My daughter's have not been much help either which doesn't help with the comments either. Feeling very stressed. Thanks for listening.

jola57
01-14-2010, 10:32 PM
Cindy I hear you, my goodness 16 years is a lot of memories to sort thru. There is no way of getting our relatives to see how we realy feel. Whether it is their way of coping or just inability to see that we realy suffer but just don't show it, I don't know. I know too that telling them will not help. I also know that telling you to get your girls to help more in reality is impossible. Life is life and reality is that if we put on a show that is what everyone will see and draw conclusions. So slow down, throw out as many things as you can. Papers don't need to be stored if they are a few years old, clothes, momentos - keep only the most sentimental and only fitting ones. I go thru my closet three times in a month and find things to give away each time. Most of all rest, rest, rest in between.

elephant
01-14-2010, 11:06 PM
Cindy, moving is stressful in itself. Then on top of being on prednisone and feeling worn out, wow it is normal to be feeling the way your feeling. You probably feel like you have to do this on your own and it becomes so overwhelming esp when you don't have anyone to really help/understand what your going through. Like, Jolanta said just take your time and rest in between. This is the perfect site to get your feelings out and vent and we are happy to listen. I do have a funny story to tell you about my moving day 5 years ago....
We were moving from Chicago to Greenville,SC and my husband had to start work before we moved. So I was left to do all the work, except we did have packers come in. I also had a newborn infant and a 4 year old and two big dogs. Anyways the packers were done packing and I went to stay with the in-laws who lived 1 mile away and then return back to feed the dogs in the morning (dogs stayed in the house). When I walked in the house it smelled like POOP! Walked in the family room and every square inch was filled with POOP and URInE. It was a complete Nightmare! Had to go to the neighbors and get paper towel and soap/water ect to clean the family room and then had to bath the dogs. What happened was before I left the dogs got into the charcoal grill and licked the white crap coal stuff. The packers dumped it and the dogs got into it and I didn't see that. So that is why they POOPED their brains out! those poor dogs. That just one of my stories about my move....I have more ...

Barbara1966
01-15-2010, 02:31 AM
Thank you all for the words of the encouragement.
There is no blood clot in the lungs, I have checked this twice already. From December I do have a new team of doctors in Yale Hospital and we already discussed other options like Ritixbum. but first they wane to see if cytoxon will do the job.

Doug
01-15-2010, 02:49 AM
Sending you this video to cheer you up. Doug this one is for you as well.
Sympatico.ca Video - Talking Cat Drinks Milk From A Spoon (http://en.video.sympatico.ca/index.php/en/video/Entertainment/2/more-entertainment/35814922001/stupid-videos/34593261001/talking-cat-drinks-milk-from-a-spoon/57966458001)

What a hoot! Thanks, Jolanda! I showed it to Louie, who was mildly interested. I sent it to to my sister in Seattle, who will appreciate it, too. When I let Louie down, he walked over my keyboard, knocked my webcam off the monitor, and somehow managed to take the attached photo:

212 Not bad for an amateur photographer! (double-left-click on the photo. The little, unfocused blob in the lower left of the photo, a sideway look at the back of my monitor and Dieffenbachias, is the photographer's tail tip!)

pberggren1
01-15-2010, 04:11 AM
Oh Cindy! My heart goes out to you. I wish I was in Edmonton and I would come over and help you and visit - I think that would be good for both of us emotionally. I know what it is like to do stuff one day and the next be totally exhausted. I find it quite difficult just to keep up with my personal day to day hygiene sometimes let alone the house work. I have an Aunt in Edmonton and some cousins as well. If I get feeling better maybe I could come up there for a few days in the spring.

elephant
01-15-2010, 06:21 AM
Barb so glad you hear that. Hoping the cytoxan will get you well soon. You will get there. I say that to myself too.

Sangye
01-15-2010, 07:39 AM
Barb-- I'm glad they checked for a blood clot. However, if you're still having such shortness of breath after that much ctx, something is wrong. It would be good to ask the Yale docs to consult with a VF specialist just to be sure. Yale is great, but they don't specialize in vasculitis.

Cindy-- I had to move cross-country in Oct '08 with 2 big dogs and a little bird-- all in one tiny car. I was in horrific shape. I also had to officially close my chiropractic office, even though I hadn't been back to work since mid-2006. It was like a nightmare. I had to make all the arrangements myself in addition to getting all my Maryland docs lined up and ready to see when I arrived. Two days before I was leaving, I didn't even have anyone to drive my moving truck. I was going to tow my car behind a UHaul with myself, 2 dogs and a bird cage all stuffed in the front seat! Thankfully a friend offered to drive at the last minute. I didn't have a place to live when I arrived, and had to stay in a motel with all my animals. Every day for a week I loaded them back in the car and drove around looking for a home. I was in excruciating pain and the Wegs was nowhere near remission.

So believe me when I say, "I understand." Please come back and let us know how you're doing. We all have plenty of people in our lives who either don't care or don't understand how tough it is having Wegs.

Terri
01-15-2010, 11:28 AM
Hang in there Barbara. You can't see it now but it WILL get better. I was where you are several times. Good days, bad days. If you read back on some of these posts you will understand what we mean when we talk about a new normal. You will never return to your "normal" self, but you will find ways to cope and deal with the changes. I believe I have found the prednisone to control my body the most. Anything over 10 mg and I just don't function well. After I was diagnosed, it took me 8 months to return to work but everyone is different. Sometimes I wish I would have went for the long term disability. I have many bad days at work and then I am totally exhausted when I get home.
It is tough because it is so life changing and also the meds interfere with your emotions too.
I carry these words with me and read them often: Do not look forward to the changes and chances of this life in fear. Rather, look to them with full hope that as they arise, God. will deliver me out of them. He is my keeper, He has kept me. Hold fast to His hand and he will lead me safely through all things; and when I cannot stand He will hold me. God will either shield me from the suffering or He will give me the strength to bear it. I hope this can help you. Like I said, it WILL get better. Keep in touch because the support alone from this group can help you. I wish you better days ahead!

Cindy M
01-15-2010, 01:08 PM
Thanks for all the kind words and understanding from everyone. I think I was just really tired and stressed out, things have been getting better. My mom called and wished she could be here to help me and I know she really means it. My aunt and cousin are going to help me pack my kitchen tomorrow. I also have quite a few friends and relatives coming on Saturday for the big move and to help clean. It's just been the getting to this point and feeling like a failure that really got me down. From some people I get words of encouragement and some understanding and then from others it is totally the opposite. But thanks again.

pberggren1
01-16-2010, 01:45 AM
You are not a failure Cindy. Just look how far you have come. We can never do anything totally on our own. We always need help. Thank goodness you have friends and family close by to help you out.

Doug
01-16-2010, 02:28 AM
Well "spoken" Terri- Nothing is more encouraging to me than to see people dealing with the worst of WG after I did start to come to the realization they can deal with WG and that the "new normal" is a stage you can accept and adjust to. Give yourself a gold star for your sensitive and accurate recognition that there are times we have to accept truly difficult things ( "Sometimes I wish I would have went for the long term disability. I have many bad days at work and then I am totally exhausted when I get home. It is tough because it is so life changing and also the meds interfere with your emotions too." quote of Terri's last post).

Old hands like Phil, Jack, Sangye, and the rest of us need reminders from time to time to help us deal with new circumstances of our own, and it is encouraging to see that others are growing into the next group of weggies who can add to the advice and encouragement they once needed when they came onto the forum. I think you are much too nice (more like a Jolanta or a Lisa Coffeelover or Phil) to be a nag like, erm, well, we nags know who we are! That's good, too. Among us there are many who can say just the right thing to each new question, and you've made the transition to Sage Advisor, which is the nice guy version of Nagger! Ha!

Sangye
01-16-2010, 02:37 PM
You're hilarious, Doug. :D

Terri
01-17-2010, 01:00 PM
I love you guys!!!

Cindy M
01-25-2010, 10:30 AM
Thanks for all the good thoughts, the move went great. On the day of the move I ended up with alot of help. Lots of family showed up to help. I am now staying at my sisters until my duplex is finished being built. Needless to say that after all the packing and moving I have been pretty exhausted. My sinuses have been giving me alot of problems but I go on Feb 1st to the rhuemy for my monthly checkup so we will see how things are. I think my dog is more out of sorts than I am with the move. I am really looking forward to the new place.

elephant
01-25-2010, 12:20 PM
Cindy so glad you got help with moving. You need to take a nap and rest. See if that helps....Hang in there....

Sangye
01-25-2010, 01:24 PM
I agree-- rest, rest, rest. And when you're all rested up. Rest some more. Feb 1 can be a long way off, and if they need to adjust your meds that will take awhile to kick in, too.

Lightwarrior
02-01-2010, 02:28 AM
I made a table based on Sangyes system to help me track symptoms, I changed thumb and first finger for shortness of breath since that is more of a problem for me. I hope I can attach, not sure how so my cut and paste may work. Here goes. Okay the cut and paste worked, now can I attach? I figured it out but I think the table thing makes the file to large, it exceeds limits. You can probably cut and past this on to a blank work document, if you find this format helpful.





Wegeners Scoring



0=none 10=worst possible

Date:________to________



Symptoms

Scores

Sun

Mon

Tues

Wed

Thur

Fri

Sat
Joint pain outright















Joint pain following activity















Joint pain at night















General stiffness















Shortness of breath















Fatigue unimproved by resting















Extreme fatigue/weakness















Low grade fever















Sweats















Blood streaks from nose















Vasculitis rash















Insomnia















Fluid in ear

















TOTAL




















Wegeners Scoring



0=none 10=worst possible

Date:________to________



Symptoms

Scores

Sun

Mon

Tues

Wed

Thur

Fri

Sat
Joint pain outright















Joint pain following activity















Joint pain at night















General stiffness















Shortness of breath















Fatigue unimproved by resting















Extreme fatigue/weakness















Low grade fever















Sweats















Blood streaks from nose















Vasculitis rash















Insomnia















Fluid in ear

















TOTAL

elephant
02-01-2010, 02:52 AM
This is great LIghtwarrior! My confusion is if I have three of the symptoms out of the 13 listed (of course everyone is different) does that mean I am going into a flare? This is where I start to get anxious and wonder what many of us go through ( infection vs viral vs WG flare vs side effects to meds vs permanent damage).
thanks so much for this :)

Lightwarrior
02-01-2010, 03:01 AM
I think it would depend on how severe the symptoms are. i.e. three symptoms rated under 5 vs three symptoms rated over 5. Are the symptoms consistent? Every day are they present and are either staying the same score or increasing in score? I suspect from all of the posts and my new experience that most of us will rarely be "symptom free". But with Sangyes system we can figure out what is the "new normal" vs need to seek help. (Remembering that Jack is right and we have to not let denial take over). Side note we all have to remember that "de nile" is not a river in Egypt it is denial and can be dangerous for us LOL (Yes i have an odd sense of humor, I think it is a nursing thing)

elephant
02-01-2010, 04:35 AM
Can we add Crabbiness to the "Wegener's Scoring System" ? I feel that when I start to get a symptom like for example my ears are feeling fuller than usual I get a little crabby. I think it has to do with no control over this stupid disease and the frustration of " Now What' or "What next" ??

Lightwarrior
02-01-2010, 04:37 AM
LOL elephant, definetly add crabbiness, yesterday I was a 10 today more like a 3 :-) Most likely crabiness is directly related to symptoms.

moyan
02-01-2010, 07:45 AM
Hi. Every morning when I wake up I ask the disease "Where are you gonna be today"?

Sangye
02-01-2010, 08:08 AM
LOL-- this is great, Lightwarrior!

When you're making your list, you've gotta put your own symptoms unless the ones I listed are the same way Wegs presents for you. Blood streaks are a big indicator for me, since I wouldn't normally have even tiny amounts of blood. For someone with major nose involvement, blood streaks might be present during remission.

Elephant, first score yourself in remission--that's your baseline. (You might have to create a baseline score by reflecting on how you felt a few months ago.) Then score yourself each day for a week or so. If it's not clear to you whether it's an early flare or just a temporary wobble, share it with your doc (include the baseline score).

elephant
02-01-2010, 11:01 AM
Thanks Sangye, I am hoping for some answers by the end of the week.

Sangye
02-01-2010, 12:07 PM
I hope it'll be okay. It's so stressful and frightening to wonder.

Brooke
02-02-2010, 01:22 AM
Nice system. Does everybody have or once had joint symptoms? I do not have any joint problems, never have thankfully. Only sinsus, upper airway, lung, and fluid in ears.

elephant
02-02-2010, 01:27 AM
I always had joint symtoms, that's when I know I am going really down hill and heading toward a huge WG flare!

Sangye
02-02-2010, 01:31 AM
Brooke, there isn't a single symptom that every Weggie has. That's part of what makes this a crazy disease--tough to diagnose, tough to assess if the treatment is working, and tough to tell if a flare is beginning or if it's something else (eg infection). That's why everyone needs to make their own list.

Everyone does seem to have fatigue at some point, but even that is highly variable. For some it's overwhelming and/or relentless and for others it's manageable and/or temporary.

Brooke
02-02-2010, 02:08 AM
Thanks Sangye, I have a "diary" in a word document that I write in everyday. I usually write how I slept and how I feel during the day.
I have an off the topic question : If somebody told you a really funny story/joke - are you able to laugh really hard with out coughing? Sometimes I can laugh pretty well, other times I have to stop laughing because I will cough too much.

Sangye
02-02-2010, 03:47 AM
My laughter cough has gotten a lot better. It used to be terrible, a big problem for me. I laugh a lot. My friends will often say they hear me coming well before they can see me.

elephant
02-02-2010, 04:38 AM
Brooke every time I laugh I start to cough. Still do. I also notice if I eat sometimes I get out of breath. My husband thinks that I am scarfing my food so fast that I don't breath in between.
I beg to differ. :)

JanW
02-02-2010, 05:28 AM
My friends definitely hear me before they see me -- the breathing of someone with SS is pretty noticeable.