PDA

View Full Version : Finally getting off Preds



Pages : [1] 2 3

Dumpy
01-04-2010, 05:51 AM
Went to my Rhumy last week and after looking at my blood work the sed rate was at 16 and has been close to that for some time now and he is taking me off of the Preds. It is really a good feeling to know that I am finally getting off some of the meds but it is also kind of scary too. It is like looking over your shoulder and trying to make sure that our BFF is not sneaking back up on you and getting ready to jump back onto your back. Hopefully it will hold up and I can start getting off of the Immuran soon.
Hopefully every one has started off with a good New Year.

Jack
01-04-2010, 06:18 AM
Great news if you can manage without prenisolone. How much are you taking and for how long? It could take you some time to get down to zero safely.

Dumpy
01-04-2010, 06:55 AM
Jack I first started on Peds when the doctors diagnoised me with BOOP in March of 07 and was put on 40 mg a day. After going through 11 months of treatment for the wrong thing and it was determined that I had Wegs I was put on 60 mg of Preds along with the Cytoxin in Feb. of 08. My Rheumy has been slowly backing me off of the Preds for the last year. I was on 2.5 mg every other day for the last 2 months. I went to a wegs specialist back on the first of Oct 09 and she has been talking with my Rheumy and decided it was time to step off of the preds.

Jack
01-04-2010, 07:09 AM
That does not sound like very much at all. Hope you can make the final steps without problems. I would think there is a very good chance that you will. :)

elephant
01-04-2010, 07:23 AM
Being on 2.5 mg of prednisone is not much at all. Wish you the best and hope it works out for you. Keep us updated on how your doing. ;)

Sangye
01-04-2010, 07:52 AM
What fantastic news, Dumpy! I would think if you've done well at 2.5 every other day for 2 months, you'll be just fine once you stop it. I'm SO glad you saw that Wegs specialist.

[ I would add that while we generally think 2.5 mg is not much, it really depends on the person and their pred history. I can't even tolerate 5 mg/day-- it acts like a much higher dose. Even my Wegs doc was amazed. I developed a moon face and supraclavicular fat pads after taking 5 mg for only 2 days. I had been off pred for 2-1/2 years by then!

Thankfully, he understood and accepted what was happening, and put me on "only" 4 mg/day. Even so, if you saw my body changes with that, you'd swear I was on 40 mg or higher. During the 4 weekly ritux infusions, the 100mg IV solumedrol (equiv 150mg oral pred) nearly killed me. I was so weakened by it. ]

Dumpy
01-04-2010, 08:34 AM
Sangye I will always be grateful for all of the nagging you guys did about seeing the specialist that made me step back and decide to go and make that visit. It really gave me a lot of relief to know that I really had 2 good doctors and every one was on the same page. Doctor Fessler did say that there was a lot of cases where the docs had really caused a lot of havack with peoples health by changing medications at the wrong times and the wrong directions and caused a lot of damage before it could be corrected.

My Rhuemy did a good job of backing me off of the Preds and was always cautious to err on the safe side. He took over a year to back me off of the preds and was doing blood work once a month while doing it to make sure it was all right.

Sangye
01-04-2010, 02:33 PM
I'm so happy to hear that your rheumy has given you such great care. I have a feeling you're going to be feeling great in no time. :)

moyan
01-06-2010, 06:25 AM
Hi, I don't quite know where to put this, but it might be interesting for somebody. Suddenly I lost my appetite. Totally! Ignored it since I knew I needed to lose weight and thought my subconsious was at work. When I finally went to the lab and learned that kidneys were down to 50%, doc immidiatly sent me to the hospital where I was diagnosed within a day. Now that I know more, that stupid sinusinfection that did not feel like any I had had before and the blocked ear where the spec could not find anything were symptoms of WG. Never having been really sick I trusted my doc (another) to do the right thing but...........Had she listened to my request for a referral to an ent.....

Jack
01-06-2010, 06:34 AM
....Had she listened to my request for a referral to an ent.....
A referral to an ENT consultant could have resulted in the same treatment that both I and Doug received from them - misdiagnosis and a trip to Death's door!

Luce
01-06-2010, 07:10 AM
Congrats Dumpy - I'm struggling with my increased pred at the moment. I've been on 5mg for quite a few months now and it's a bit of a shock having to take 20mg again due to a recent flare. I'm really not sleeping well, can't seem to get into a deep sleep and I wake up very suddenly in the middle of the night being fully alert immediately.
I also hate the sweats that have come back, the wanting to eat everything in sight despite not being hungry and that feeling of being close to a panic attack. I'm also feeling the paranoia and freak at the slightest sound or movement that I spot out of the corner of my eye.
I'll throw a party the day I finally get off the evil elixir that is pred!

elephant
01-06-2010, 08:00 AM
Moyan, I am so sorry to hear that. I remember you mentioning the dizziness and passing out. I think that it is related to the WG flare. So what kind of medicines are they putting you on for this flare? How is your blood pressure?

elephant
01-06-2010, 08:04 AM
Luce, did they start you on 20mg for the flare or were you on a higher dose of Prednisone? I didn't start to sleep until my prednisone was reduced to 10 mg. Are you able to sneak a nap in? How are you feeling over all?

Sangye
01-06-2010, 08:07 AM
Luce, you and I are in complete agreement about pred--it's completely evil. Yesterday I started tapering from the 4 mg/day I've been on since July. My doc said to cut down by 1 mg/month. Feeling uncertain about some symptoms I'm having, I decided to just go to 3.5 mg first and see what that does.

When you and I are completely off, I will join you in a BIG party.

elephant
01-06-2010, 08:17 AM
I went to my Rheumy today and she wants to decrease my prednisone too by 1 mg/month. I am a little anxious. She said I can stay in remission without the prednisone. Today we went over my sinus stuff. I am starting the veramyst and see how that goes. At this time I have to keep a close eye on what is a flare or cold/sinus. My thought is this ,"I'm on 6 mg prednisone, so wouldn't it show it's (WG) big ugly face if I'm on that dose? " My Rheumy wants me back on Boniva. I stopped it four months ago. Just don't need another side effect. Don't know if I should go on it. Any thoughts?

Jack
01-06-2010, 08:36 AM
I would not take Boniva unless a bone density scan suggested that I needed it. There is the potential for some nasty side effects and most of the increased risk factors seem to apply to people being treated for Wegener's!
I take a similar drug myself, but only because my bone density score is off the scale - on the bad side. :(

Sangye
01-06-2010, 08:47 AM
Elephant, I started a thread awhile back called "Thoughts on Bisphosphonates." That would sum up how I feel about them! Jack has no option at this point and has to take them for his safety.

I think your rheumy is showing good judgment by trying to get you off pred. Any reduction is good, and any amount of time off of it is very good. You can definitely be in remission without pred! I was off it for 2.5 yrs. I wasn't in remission, but I didn't have seriously active Wegs, either. Just "smoldering" Wegs. If we had increased my Cellcept, I think I would have been great. But many people maintain remission just fine without pred.

Besides, I want some company in the "Dropping 1 mg a Month" club. :D

pberggren1
01-06-2010, 10:01 AM
I second that Jack.

Moyan it is very important to have a Wegs Specialist - like my Rheumy who for some reason is not responding - and a team that communicates - a GP, ENT, Neph, etc. ENT's don't have the training, knowledge, or experience with Wegs that a Wegs/Rheumy has. Typically I have found Rheumys to be the best at treating Wegs. Sangye may be able to shed more light on this area.

Sangye
01-06-2010, 10:05 AM
Nope-- that's what I woulda said!

pberggren1
01-06-2010, 10:09 AM
You mean I read your mind Sangye?

Sangye
01-06-2010, 10:10 AM
LOL-- hopefully not. Wouldn't want you getting stuck in the tar pit of my mind. :D

pberggren1
01-06-2010, 10:12 AM
You mean the mind of a brilliant person?

By the way, what is Boniva? Is it like Actonel or Fosamax?

Sangye
01-06-2010, 10:22 AM
Well, I've been called a lot of things in my life, but "brilliant" ain't one of them. LOL~

All 3 are bisphosphonates-- a particular class of drugs used for osteoporosis.

elephant
01-06-2010, 10:24 AM
Boniva is like Actonel and Fosamax. Boniva is taken once a month. I have osteopenia, and my Rheumy said that my bone cells can die from the prednisone, even if is only 6 mg of prednisone. I was really suprised. Am I a dummy for not taking the boniva?

Sangye
01-06-2010, 10:32 AM
How old are you, Elephant? How rapidly has your bone density been decreasing?

elephant
01-06-2010, 10:36 AM
I am 44 years old. Two years ago, I had a bone density test and it showed normal but almost hitting osteopenia. Then I has one a year ago and it showed osteopenia. I am thin too.

pberggren1
01-06-2010, 10:43 AM
Oh no, you better fatten up!!! HA HA!!!

Sangye
01-06-2010, 10:54 AM
I suggest you see a naturopath. There are many ways for you to increase your bone density naturally and safely (even with Wegs). They can look at your pred history and see what can be done. Naturopaths are licensed to prescribe and understand pharmaceutical drugs as well as natural medicines.

elephant
01-06-2010, 12:30 PM
I will look into one in our area. Hopefully I will find one nearby. Thanks Sangye for the information and support. By the way you are brillant!

Sangye
01-06-2010, 12:57 PM
You're welcome. But cut it out with the brilliant stuff. My head is already big enough thanks to pred. :D

pberggren1
01-06-2010, 02:14 PM
Brilliant and Witty!!! What next?

I didn't know that about naturopaths Sangye. Maybe I will see one here in town. I started back on the Fosamax in September because my GP said the bone scan I had done 2 weeks earlier was low on the normal side. I know that some people cant take drugs like that. I know you have an issue with them. Could you please restate that and fill me in a little more about these drugs and what a naturopath might be able to do about bone density.

Sangye
01-07-2010, 02:00 AM
Phil, did you search for the thread I mentioned (about bisphosphonates)?

pberggren1
01-07-2010, 02:40 AM
NO. But I will now. Thanks Sangye.

Rose Cozzette
02-19-2010, 09:29 AM
A referral to an ENT consultant could have resulted in the same treatment that both I and Doug received from them - misdiagnosis and a trip to Death's door!
I hear youtoI also went to ENT at national Jewish Ctr. and he blew me off, did put me on decadron which made me pychotic. It wasnt until i had to go to ER with bleeding bowels and the doc on call, my angel, who knw it was serious and consulted with my now rheumy doc, that i got diagnosed. am 9 mos. post and still weak. also cant take mthotrexate nor the imuran so waiting to see what is next. still on 20 mg of pred and cant wait to decrease it. many side affects. ugh...

elephant
02-19-2010, 09:34 AM
Have the mentioned Cellcept, that is another drug to suppress WG.

Terri
02-19-2010, 11:05 AM
Well Rose,
I for one believe there are angels among us.
Thank goodness you had one in the ER or who knows where you would be.
Hope you find your new "normal" soon. You will. Just don't give up hope.

Rose Cozzette
02-23-2010, 09:16 AM
Have the mentioned Cellcept, that is another drug to suppress WG.
I have not heard of it but will check it out. thank you. would you share your history with me? I am new to this and feel so isolated. :{

Rose Cozzette
02-23-2010, 09:18 AM
Well Rose,
I for one believe there are angels among us.
Thank goodness you had one in the ER or who knows where you would be.
Hope you find your new "normal" soon. You will. Just don't give up hope.
thanks, it sure is a long process. would you share your history with me? i feel like i am so not me now, dont know who i am but is sure different. i am a fighter, is just so on going...

moyan
02-23-2010, 09:21 AM
Hi Rose. This is like a big family! Click on any thread under new posts for a starter and you will not feel isolated any more. And welcome, moyan

JanW
02-23-2010, 09:22 AM
Cellcept was originally developed as an anti-rejection for organ transplant patients, but has gained widespread use among autoimmune disease patients as a immunosuppressant. I too cannot take mtx, so am wondering if this drug may be next for me. Has anyone spoken to you about rituxan, which was recently (as in the last six months), proven as effective at cytoxin for the treatment of WG? Often insurers require you to fail on other drugs, which it appears you already have.

Jack
02-23-2010, 09:23 AM
Hi Rose, :)
No need to feel isolated with all of us here to support you! Anything you want to say or ask, just get it off your chest whether it is just a moan about how you are feeling or a question about medication.
Tell us how you are doing, what symptoms you have and the medication you are on. Oddly enough, we are all interested to hear. ;)

Sangye
02-23-2010, 09:29 AM
Hi Rose,
Having found this group, you no longer have to feel isolated. Here's (http://www.wegeners-granulomatosis.com/forum/new-member-introductions/116-were-not-exactly-sure-whats-going.html) my history, posted in ther "New Member Introductions" section.

Rose Cozzette
02-23-2010, 09:30 AM
thank you, how are you doing? i really am curious about us weggies and what we did before and do now. i used to be a speech pathologist and then a wood carver, which i cnt do now and really miss. the carving that is. how long does it take to not be so tired? rose

Sangye
02-23-2010, 09:32 AM
I'm a chiropractor. I haven't been able to work since I was diagnosed in mid-2006. I don't know when I'll get back to it. I absolutely love it and don't consider it "work." Fatigue is one of my top 3 problems, so I can't answer your question about it. From learning about other Weggies, though, fatigue is one of the most common and persistent symptoms. Very hard to deal with it.

JanW
02-23-2010, 09:36 AM
And you may notice that some of us, like me, are quite chatty. I work on the computer (writer) so I'm on everyday, and constantly at that.

I was diagnosed about a month ago, tried mtx, liver couldn't tolerate, have surgery to correct a subglottal stenosis scheduled for next week. Also, I have a saddle nose which my freckles somewhat, though not entirely, minimizes. I will get on a new medication after my surgery. No pred yet -- doc thinks my disease (which was likely misdiagnosed in 2005 as asthma is moving quite slowly) and he wants to see if he can take the inflammation down with immunosuppressive therapy (tradeoff -- tons of monitoring, biweekly visits, blood draws and urinalysis because we all know that slowly can turn on a dime with wg).

Sangye, I'm off to read your story...I was trying to look for it ages ago but couldn't find it.

Rose Cozzette
02-23-2010, 09:43 AM
well thanks, i do have my cry days and a few good ones now and then. so i will vent here. it is'nt easy to tell one's family as they get all upset. has anyone heard of the cleveland clinic for wegeners? we found it on the web. how long post are you? rose

Sangye
02-23-2010, 09:53 AM
Rose, the major centers for treating Wegs in the US are Cleveland Clinic, Johns Hopkins (Baltimore), Boston University, and Mayo Clinic (Rochester or Florida. Arizona does not specialize in Wegs).

Where do you live? It's very important to see a Wegs specialist. We can help you find one if you like.

Rose Cozzette
02-23-2010, 09:56 AM
i live in colorado. have you been to any? i guess my greatest fear is relapsing due to not being aware of what is out there and available. my rheumy doc seems to be burned out.

JanW
02-23-2010, 10:07 AM
Rose -- I think that we have members on this board who have been to everyone one of those centers, and many others around the world! I'll let them tell you about them themselves. I'm outside of NYC and see specialists up here.

Sangye
02-23-2010, 10:16 AM
I started with local docs. My original rheumy said he'd treated about 12 Weggies in 6 yrs. I never asked any details about that-- outcome, etc... and in time it became abundantly clear he had no idea how to treat Wegs. I then went to Mayo Arizona. The care was much better, but the doc still wasn't a Wegs specialist. I moved to Maryland in late 2008 and started at JHU. I just wish I would have done it sooner. I would have avoided a great deal of stress and damage.

elephant
02-23-2010, 12:10 PM
Rose, I had WG for over 30 years. I was around 12 at the time complaining of joint pain ,lost weight, pink eye, bronchitis ( felt all the time). Went to a Rheumy and they thought I had RA and put my on aspirin for the pain. I gradually got worse and had many complaints, but never did anything about it ..I was 14 and wanted to be cool! I got so bad, didn't want to eat, lost weight and had back pain ( kidney's failing). I ended up at Children's Memorial Hospital for about two months and they knew ( rheumatologist) I had some type of autoimmune disease but didn't know what. I was on high doses of prednisone and I think cytoxan. I stayed on prednisone for years and my kidneys were failing slowly. In 1989 I got a kidney from my brother we were a perfect match. I was put on cyclosporine and prednisone. I felt pretty good. Once I got off the prednisone and reduction of cyclosporine I was having minor pains all over my body ( severe headaches, fast heart beat, chest pain, abdominal pain, fingers and toes tingling). Went to doctors on/off and they all thought I was nuts!
In 2005 It got worse severe sinus pain , ear pain and joint pain there is more but can't think of them now. I was in denial. Finally after two sinus surgeries in 2007 and not getting better I went to a smart allergist and told him my symptoms and gave him my biopsy report. He just said, "You have WEgeners." Then it was confirms with positive anca. Anyways the local rheumy thought I had limited and just put me on high dose of Prednsone and just kept me on cyclosporine. That was not working so they put me on imuran and that caused a allergic reaction. So then they found a lung nodule and they wanted it out because it could be cancer, not Wg. So I had a open ( video assisted thoracic surgery). So the WG specialist was called in and they decided Cellcept, cyclosporine and prednisone. I am wondering if the triple therapy would work for others on this forum.

moyan
02-24-2010, 12:34 AM
Elephant, just face it: You were born 20 years too early!
You really deserve to get better and only enjoy what is there for you and your family, so that is what I wish for you. Moyan

elephant
02-24-2010, 12:47 AM
Thanks, Moyan. I am actually OK with it all. I have come to a "peace." So much has happened and is always happening to me, I just told my husband , I am going to have a laid back attitude and if things get bad, I will go to the ER and just keep plugging along. That is all I can do.
I try to live my life everyday like it is the last. So, my first priority is my family and continue to do the daily activities...which keep me going and feel normal. I can't keep living and waiting for the other shoe to drop....because it is going to drop...sorry but true and realistic. That is life in general for healthy people. It also keeps me positive...doing normal things make's you feel like your normal.
Thanks Moyan, I love your support.

jola57
02-25-2010, 03:31 AM
So true elephant, daily activities as normal as they are keep me going. I feel better or worse but still continue working, cleaning, shopping, making dinner. Life doesn't stop just because. I do take more time to relax, I have to or I would fall flat on my face. I am an 85 year old in 53 year old body.

Jack
02-25-2010, 03:42 AM
I am an 85 year old in 53 year old body.
Isn't that the wrong way round? Or does having Wegener's suit you really well? ;)

renidrag
02-25-2010, 05:41 AM
Speaking of coming off prednisone, I am in day 12. so far so good. I have an appoinment with pulmonary on the 8th, last bloods were good and was drawn today for the appt along with urine. My wife and I remain cautiously optimistic. I remain tired. I think we will switch to Imuram also.
Say bye bye to Cytoxin.
Dale

Sangye
02-25-2010, 08:53 AM
Dale, that's terrific news! I can't wait for you to say goodbye to cytoxan. It's a strong drug and you'll definitely feel better once you're off it. I'm so glad you're making good progress. :)

elephant
02-25-2010, 09:16 AM
That is great news! Hello to imuran! :)

jola57
02-25-2010, 06:28 PM
Jack, I am 53 but feel like 85 so I don't know which way around sound better, I tapered down 1 mg per month and am at 8mg pred, but i am beginning to feel pain in hands and hips. I will see another week and then either go up slighltly or stay at 8 for longer.

elephant
02-25-2010, 10:30 PM
I have thought about lowering my prednisone, but I am going to wait till April and start weaning down 1 mg a month. I am going to stop at 8 mg and see how things progress. Hope you can lower Jola. :)

Jack
02-25-2010, 10:46 PM
elephant - you can't just decide to lower you pred without approval and monitoring of your condition by your consultant. It is a far too critical part of your treatment and not to be treated lightly. Getting it wrong and trying to reduce too early could easily result in a flare.

Rose Cozzette
02-26-2010, 09:10 AM
thanks, i am new to this so wanted to check it out. how are you doing? rose

Rose Cozzette
02-26-2010, 09:22 AM
elephant, thanks for sharing. i wish we didnt have to be such an experiment for the med. field. sigh... my rheumyis supposed to also be experienced with weggie, but i am wondering. i see him next week. i struggle with accepting this disease as lifelong. so am up and down emotionwise. i dont like that i went from being so healthy to so old also. try to put my energy into more holistic things like Reiki and myofascial techniques. i am trainedin both so am teaching my p.t. and she is doing well with them. they both have facilitated my comfort zone to improve. anyone out there using these? would love to see these help others. both are accepted techniques in rehab. rose

elephant
02-26-2010, 10:17 AM
Jack, your right. I see my local Rhuemy April 1st, so I am going to see if it is ok. I see my ENT down in Charleston,sc tomorrow and get his input to keep the sinus close to normal.

Sangye
02-26-2010, 10:46 AM
Rose, you can verify your Wegs doc's experience by contacting the VF and asking if they know of him. If not, he's not.

JanW
02-26-2010, 12:02 PM
If you are comfortable, Rose, you can always ask your doctor how many Wegs patients he has seen, and whether he has someone to consult with should he need to. Now granted, some docs may have such an offputting manner that you feel as though you can't ask this question, but I think that the best doctors (I believe Sangye said this earlier) welcome the informed consumer. He shouldn't feel threatened at all by knowing that you want someone who is familiar with this very rare disease. It is absolutely not disparaging to his practice if he has never seen it before. As my ENT (who has performed hundreds of SS surgeries before mine) said, "you've got to be humble. Much more skilled surgeons than I have had someone die on the table from this procedure." Although he immediately added that he had never lost a patient!

Rose Cozzette
03-02-2010, 08:27 AM
i will ask him, i think he is burned out. he seems to run around and distracted. i see him tomorrow. i have seen so many docs up to now and have worked with so many that i know i have to be direct or they dont hear me. thanks.

Rose Cozzette
03-02-2010, 08:29 AM
i will do this, i hadnt thought of it. i see him tomorrow. did you have continuing sinus problems even after treatment? mine never seem to let up.

JanW
03-02-2010, 08:30 AM
Your sinus situation should get better once your WG is under control. In fact that's probably one of the ways that you will know that it is getting better.

Rose Cozzette
03-02-2010, 08:33 AM
glad to hear this, i was wondering if it would improve.

elephant
03-02-2010, 12:56 PM
I have problems with my sinuses, I would say they feel better, but not 100% better and it will never be that way. I have permanent damage to my left maxillary. I am paranoid with any little thing that goes on with my sinuses. The ENT ( saw him Thursday) said that I have crusting, not alot...but he said it could be the winter. So I am keeping another eye on that, because it's always a freak out session!

Sangye
03-02-2010, 12:59 PM
Elephant,why are you paranoid about your sinuses? Not that you shouldn't be, I'm just wondering what it is that elicits more fear.

elephant
03-02-2010, 01:10 PM
I just freak out when any little thing goes on with the sinuses, because I already had four surgeries. So if the sinuses are abnormal then I start to wonder and I going into a WG flare. I had this cold for almost three weeks and it is getting a little better, The ENT said that I had no infection. So I go in that mode is it WG flare or is it JUST A COLD????? Then of course I have surgery coming up March 17th, so I don't want any type of respiratory crap going on. Nervous Nelly...that is me.
Does anyone else get this way...Freak out session??

Sangye
03-02-2010, 01:15 PM
Does anyone else get this way...Freak out session??
I thought it was a prequisite for Wegs 101. You mean it's not?

Jack
03-02-2010, 09:25 PM
I sort of know what you mean about the sinus thing. After having terrible trouble with mine, any slight blip rings the alarm bells, but my powers of denial are very strong and protect me! ;) (unless Sangye hears about it!)

Sangye
03-03-2010, 02:24 AM
LOL-- I've got your back, friend. :D

Rose Cozzette
03-05-2010, 09:14 AM
after reading all your responses, i feel just the same. i was told a relapse would start like before, with the sinuses so i too get a bit paranoid abt them. amd they dont let up much. i have 2 humidifiers going, it's dry here in CO, and use a ton of tissues daily. i am more affected on the right side and my hearing loss is there also. always feels like my ear is blocked. my PT does the MFR 2x wk and it helps a lot for comfort and also helps the sinuses drain more.
this fear of relapse can get the best of us,huh? oy

moyan
03-05-2010, 09:27 AM
Hi Rose, I was advised here and by doc to flush sinus and it helps ears, nose and eyes. Ask aT PHARMACY

Sangye
03-05-2010, 09:58 AM
Rose, while any return of "original" symptoms is often the sign of a flare, many people who've had several flares report that each time they've had different symptoms. Basically, anything that's new, worse or just strikes you as "off" must be checked out.

And yeah, I guess the fear of relapse can get the best of you. I've never been in remission, so with me it's more the fear that I might never get to it!

pberggren1
03-05-2010, 10:31 AM
Rose, what does PT and MFR mean?

I use a WaterPik to irrigate my sinuses every day. It is a must for me even when I am in remission. I always have mucus, crusting, and bleeding in my sinuses. So I highly reccommend irrigating with a WaterPik if you have any type of sinus involvement.

Rose Cozzette
03-07-2010, 08:36 AM
Thanks, i think my sinuses are better, just dont let up. I get dizzy at times, right side turn of the head a certain way, so have to be careful when up and walking. Started a pred decrease again and also the methotrexate injection. Didnt want any more oral as my poor stomach has taken a beating thru all this. Are you on both of these yet?

Rose Cozzette
03-07-2010, 08:42 AM
PT is physical therapist, i see her 2x wkly, and MFR is for myofascial release therapy. She does MFR and reiki, which i am training her in as i have extensive training in and am a Reiki master and have taught classes for years. I used to work with a really good PT who got me into MFR and it is really effective in facilitating gentle progress. I could not tolerate typical therapy as it was too rough and intrusive. I will try the water pik, it just may do the job. thanks a lot. how are you doing?

Rose Cozzette
03-16-2010, 08:42 AM
i started feeling poorly so went to doc and am on antibiotics, had cough and congestion. is working, i read articles on the use of antibiotics for chronic sinusitis and it said that we are not treated long enough on antibiotics so i told my doc and he did listen so on a 10 day dose. we meaning wegeners disease. the article said it can take as long as 21 days for some to clear up the infection. i drew a picture of what i feel like having this disease, is anyone interestd in seeing it?

Sangye
03-16-2010, 09:43 AM
Rose, keep an eye on that infection. It might be Wegs in disguise. It does get tricky, because being on immunosuppressants can slow recovery from an infection.

I've been in the confusion loop on this several times now: chest infection that responds a little to antibiotics, but doesn't really kick it. Then hospitalized for IV antibiotics (stronger) that helps slightly but also doesn't kick it. Then kept on antibiotics for a month. Turned out it was Wegs all along.

The key is that you should feel markedly better within a few days on antibiotics if it's an infection (and if the antibiotic is the right one).

Lola
03-16-2010, 10:13 AM
i drew a picture of what i feel like having this disease, is anyone interestd in seeing it?

I would love to see your picture, Rose!

Terri
03-16-2010, 10:18 AM
Please post your picture Rose. Would love to see how you are feeling about W.G.

Sangye
03-16-2010, 10:21 AM
Yes-- I missed that part. I'd love to see your picture!

Rose Cozzette
03-21-2010, 03:52 AM
i know, its always in the back of my mind. i got better and then worse, the doc ordered more antibiotics and and an inhaler and they seem to be working now. tho am wiped out. the inhaler gets me all jittery. those articles i read on the use of antibiotics and how they need to be used aggressively and longer than the average person, so my doc did listen and follow thru. so hopefully , i have my grandaughters bday party coming up next sat. and i WILL be there!! she will be six and is such a joy, keeps me motivated. trying hard not to give in to the feeling poorly thing. tho i want to jsut scream sometimes. this methotrexate is not as easy to figure out, is sneakier in its side effects. have you used it?

Rose Cozzette
03-21-2010, 03:58 AM
ok, lets see if i can get the pic sent. i will try and forward it.

Sangye
03-21-2010, 04:01 AM
I sure hope you feel better, Rose. I understand about wanting to scream sometimes.

Others can help you with mtx side effects. I was only on it for a couple months and got pneumonitis (lung infiltrates) so I had to stop and can't take it again.

Rose Cozzette
03-21-2010, 04:08 AM
i thought the mtx was the reason i started feeling bad but the rheumy doc said no, i wonder.... am having trouble sending my pic thru but will keep trying. my computer daughter is gone for the weekend so may have to wait til next week. i have no computer brain. lol

elephant
03-21-2010, 05:09 AM
Rose get well soon. Glad you are going to your grand-daughters birthday party. Hope the antibiotics and inhalers work for you. Wishing you some fast healing for your respiratory system!

moyan
03-21-2010, 07:41 AM
Hi all. Noticed that I went a few steps without walker. Has anybody here been on pred for 2 years? I am now down to 11 mg started radikal, but slow, tapering about 2 months ago. Does anyone know which of my problems are pred caused. I have read evrything said here and on Google ++ but never seen poor balance, can only use one hand at a time, the other needed for support. First time little pain in joints, shaky hands and "slippery" hands, drop so much, but that too seems to be easing off also. Finally, do you know if sideeffects like that will go away?

Sangye
03-21-2010, 11:27 AM
I don't think that poor balance is a side effect of pred. It's more likely to be a result of inactivity and limited/altered gait. When I started aquatic PT last year, I had extremely poor balance and had fallen several times. Walking in water and standing in the pool to do leg and arm exercises improved that quite quickly. It won't go away on its own.

Pred definitely causes shakiness--especially in the hands. When I was on the highest doses, my hands shook so bad I couldn't write. That should go away on its own.

moyan
03-22-2010, 01:02 AM
Thank you Sangye. Will try to find that excerciser as soon as possible.

Sangye
03-22-2010, 01:42 AM
Since you're transitioning from using a walker, you might ask your doc if you can do aquatic physical therapy to help. You can make more progress in water when you're wobbly, and there's no risk of falling. A PT can show you simple exercises and get you strong enough so that you can go to a pool on your own. That's what I did. Works wonders.

moyan
03-22-2010, 01:48 AM
What would I do without you? Thanks

Rose Cozzette
03-23-2010, 07:41 AM
thank you, i am better this week. the antibiotics seem to be working and the inhaler has helped a lot. moyan, it hasnt been that long since i started walking and PT helped a lot. plus the dizziness from the sinuses was a problem so i still have to be careful. wish i had had water tx available! i am down to 17 1/2 of pred and stil shaky but am able to wrk thru better now. i now walk some in public on the arm of someone for balance and use the wheelchair only for longer distances. i had to get over my fear of falling. i talk to myself a lot. :}

Sangye
03-23-2010, 07:52 AM
Happy to hear you're feeling better this week, Rose.

Are you certain you can't get aquatic PT? It took me a lot of calling and digging to find it, and I was shocked that it was available less than 5 miles from my house.

Rose Cozzette
03-23-2010, 08:02 AM
well technically it is here but its at the hosp i used to work at and their PT dept is lousy, they believe in pushing hard and no pain no gain tx. its so bad that docs in the surrounding area wont refer pts , esp. seniors or those with serious conditions. i go out of town for my docs etc. and i also questioned their cleanliness, not claeaning after pts. used mats and equipment. i find that med. professionals are often the worst, i had to tell my home health nurses to clean their hands and equipment before working on me and to uses gloves to draw my blood. when i complained the admin staff said that i probably just didnt see them do it, this right in front of me in my own house. i worked rehab for over 15 yrs and saw it all. sheeesh...

Rose Cozzette
03-23-2010, 08:05 AM
i am still trying to send the pic but may have to wait on my daughter. my isp keeps adding stuff at the end of the address and it wont go thru. so please bear with me.

Sangye
03-23-2010, 08:21 AM
That sounds awful, Rose. I hope you can find something that works for you.

moyan
03-23-2010, 09:43 AM
Hua! Water is so wet Sangye!!

moyan
03-23-2010, 10:33 AM
Rose, there must be somebody you can inform. Health authorities, yes, they all work together, but if somebody can help you to get to the core(?)
of it. You alone do not have that kind of energy to spend I gather. Hope it soon gets better. :) Both you and lousy hospital attitude.

Rose Cozzette
03-30-2010, 08:09 AM
the good news is that i feel better now after the antibiotics and inhaler, tho i had to stop the inhaler after 4 days as it made me so jittery i felt like i was on pred at 60 mgs again. and also i get to decrease the preds to 15 as of this fri. yahoo! my grandaughters bday party was a succes and all had a lot of fun. and yes, i am still trying to get that pic to go thru, been having a few probs with my comp. lately. so hopefully... how is everyone out there doing? might finally be spring here and stop snowing.

elephant
03-30-2010, 10:34 AM
Those inhalers can do that. I hate that feeling too. Glad you had a nice time at the bday party! Spring is coming to a home near you!

coffeelover
04-02-2010, 04:06 AM
since the subject is "finally getting off pred" I wanted to let you all know that I had surgery Monday to repair the hole left by the trach (cosmetic in nature) and while she had me open she took photos of my trach. It appears that I do have some stenosis creeping back and the comment from my surgeon to my husband was that I would have to be on steroids for the rest of my life. so that is my new "normal". Pred face, pred stomach Pred weight gain and I have now accepted that. If you only knew how bad I wanted to get off that stuff and the transformation in my attitude regarding the pred you would be amazed. Heck! If it keeps me alive then so be it!
coffeelover

Sangye
04-02-2010, 04:50 AM
Was that a Wegs specialist who told you that, Lisa? I know you go to Mayo, but I forget if you see other docs too.

renidrag
04-02-2010, 06:09 AM
Coffeelover: Life is good. Maybe you can get to a level where the side effects won't be so bad.

Dale

Rose Cozzette
04-02-2010, 07:38 AM
i cant believe how much better i feel now after this round of antibiotics, am doing more, tho still get tired. and the sinus thing. sigh... coffeelover-it sounds like some have to be on preds forever but if it can be a low dose its not as bad, so hang in there. i hate my moon face too. and the shakiness. see the ENT next week and hope to get some scoping done to see what is inside my nose and ear. does anyone else have some hearing loss also? also i filled out my survey for that home health agency and its a good one, told them what they need to do to improve. hope it does some good. getting others to listen abt wegeners has been an uphill battle.

elephant
04-02-2010, 09:02 AM
Cofffelover- I was told by my Rhuemy today that she wants me off Prednisone and wants to try to wean me off very slow. She wants to increase my Cellcept because it is less damaging than the prednisone. So I start tomorrow 9mg of prednisone and if I start to show more sinus and ears symptoms then we will be calling the big Guns. I do see my WG specialist up in Cleveland Ohio in June. She thinks that if I am having symptoms then I am flaring(WG). So will have to see what everyone says about it.
So you might need a second opinion. It seem some of the Rhuematoligest are realizing how damaging prednisone is and want find other alternatives to replace the prednisone. I guess will wait and see. Trial and Error!

jola57
04-03-2010, 12:00 PM
You are so right elepahant. We are the first generation of the new drugs, we are the trial and error.

Sangye
04-03-2010, 12:05 PM
I'm grateful all of you who came before me, and all the courageous Weggies who volunteered to take ritux or Cellcept in the early studies. I'm not sure I'd be that brave. Actually, I'm pretty sure I wouldn't.

Lola
04-03-2010, 04:27 PM
Don't know if I said this or not, but my Rheumy said he hates Prednisone almost as much as he hates Cytoxan - for the side effects.

pberggren1
04-03-2010, 05:51 PM
I wouldn't be that brave either Sangye.

Sangye
04-04-2010, 01:10 AM
Don't know if I said this or not, but my Rheumy said he hates Prednisone almost as much as he hates Cytoxan - for the side effects.
Yes, I think all the Wegs specialists feel this way. The lifespan of Weggies has increased dramatically and we're living long enough to be seriously affected by pred's long-term side effects.

I've been on 4mg since September. Most regular rheumy's would keep me at that, quoting the idiotic "It's what your body makes anyway." (Evidence to the contrary: 4mg has been enough to grow a huge amount of facial hair, swell my face, grow neck rolls and supraclavicular fat pads, cause wt gain, etc...) But my Wegs doc wants me off it all together.

What the Wegs docs know is that NO amount is safe. Sometimes there's no choice but I think the numbers of people being considered "lifelong" pred users is probably shrinking.

Sangye
04-04-2010, 01:13 AM
I wouldn't be that brave either Sangye.
Okay then... All cowards please form a line to the right.

All courageous ("I'll take any drug at any time") Weggies please line up on the left. :D

JanW
04-04-2010, 02:47 AM
Agreed that regular rheumys (and pulmos, and GP, etc., etc.) think that there is a base level of predinose at which you will not be permanently affected. I am living proof that this is indeed not the case -- and I wouldn't have been so quick to ask for it several times had I known what it was going to do to my bones over the (not-so-very) long term.

I wonder if there will be more people in the future, like me, that if they are not experiencing serious or life threatening affects from WG, are not even started on this drugs as a 'first line of defense.' My doc has several WG patients that have not gone on steroids for flares, whom he says are doing fine. My WG ENT didn't bat an eye when I said I was not on steroids and in fact had stopped mtx in anticipation of the surgery and because of the liver enzyme spike. There seemed to be no feeling that the lowering the inflammation in my case was an emergent matter, particularly because I am so closely monitored (blood work and physical exam).

Sangye
04-04-2010, 02:56 AM
Jan, I have it in my head that your inflammation levels are fairly normal. Is that true? If so, no wonder they're not anxious to put you on pred.

JanW
04-04-2010, 02:05 AM
No Sangye, not so much. ESR, C-RP, and RA factor all significantly high (like double the normal values), P3 high also. However, clinical symptoms would have it appear that I am a VERY stable WG patient. Over the past five years I had worsening stenosis and about a year ago I started developing the saddle nose. During last spring, when I believe that I was having a flare, I had some nasal crusting and some pain, but certainly nothing like you all have described. With the warmer weather coming on, my nasal symptoms have all but disappeared. My primarily, really my only symptom that is bothering me at this point is my ankle swelling, which is a significant barrier in terms of mobility -- however, even though my doc and I now think there is WGs related, it's not a classic symptom, so you can't really say that you would agressively treat because of that. I have no fatigue, no swelling elsewhere, etc.

I'm not sure if my doc thinks that my numbers mean I should feel sicker -- but certainly all of my numbers point to widespread, systemic inflammation.

Sangye
04-04-2010, 02:45 AM
That makes sense. It sounds like all that's needed is an immunosuppressant, which would probably take care of your ankle pain. Joint pain occurs in a large number of Weggies with active disease, but you're right-- as long as you don't have stronger indications of systemic disease (or pain involving more joints) there's no reason to pull out the big guns.

elephant
04-04-2010, 02:53 AM
Yep, I agree. I am on day two of 9 mg of prednisone and I am crabby. Also a little more stuffy. I am going to keep a close eye.

Rose Cozzette
04-08-2010, 03:44 AM
goes to show they still dont understand much abt how to suppress our immune system yet. am down to 15 mg of preds and having hand and wrist pain, interrupted sleep, but not as irritable and starting to get hungry, wasnt before. how different we all are! the ENT did an audiogram and my hearing is back to normal from last year before diagnosis, tho i still have some hearing probs and he said its due to the fluctuating preds in my system. ?? i had a 40db loss a yr ago. the diabetes is still jumping around but not as high levels. and my INR is stabilizing finally. waht a road we are on... are we always going to be systemically challenges? oy

jola57
04-08-2010, 11:20 AM
Jan, even thou you feel fine it clearly shows an inflamation, which is silently wrecking havoc in your body, immunosupressant and pred should get rid of that. I just wouldn't want you to get so bad that you have to go on a high dose and longer period later when a short and moderate drug treatment might be enough to put you into a remission now. Talk it over with your doc whether it is worth to start a treatment now.

JanW
04-08-2010, 12:02 PM
I am being treated. Currently my doctor has me on a tolerance dose of mtx, and I will go back next week to see whether I can increase. If not, imuran or cellcept would be next for me. I'm just not be treated with prednisone because my doctor doesn't believe that my inflammation is progressing so rapidly that this kind of response is called for.

Rose Cozzette
04-10-2010, 06:22 AM
i hope this is my pic sent, still trying to figure it out.303

jola57
04-10-2010, 03:14 PM
no pic, just a note of attachment

Sangye
04-10-2010, 11:54 PM
Unless you drew a paper clip, Rose-- no pic! :D

moyan
04-11-2010, 12:40 AM
Hi Jola, Germaine sent me a couple of names and numbers yesterday. Stupid I forgot to ask if I could share them with you. I am having a bad time right now, stupid nerve in my back, iscya (?), bladderproblem, flareup since about 2 months. I want to go home!! (And I do not mean Sweden, I guess I mean be like I was before WG found me :) Will ask her today and then call you. Have a good day.

Sangye
04-11-2010, 12:44 AM
Oh Moyan, I wish I could help you. I hope the increased meds will start working. Big hugs to you, dear. :)

moyan
04-11-2010, 12:46 AM
Thank you Sangye

elephant
04-11-2010, 02:01 AM
Sorry to hear that Moyan. Big old hug from me!

moyan
04-11-2010, 04:28 AM
Thanks el :)

moyan
04-11-2010, 05:02 AM
Hi all, I wonder if this is part of "new normal": I slept OK during the night I think and only got up at 7, which is 3 hours late for me. Still I fall asleep over and over while typing.

Sangye
04-11-2010, 05:24 AM
That's not normal, even for a Weggie. Changing pred doses can cause that, but so can active Wegs. Extreme fatigue or sleepiness is a sign of active Wegs for a lot of people. Sure is for me.

moyan
04-11-2010, 07:00 AM
Thank you Sangye. Hopefully I can get to the lab Mon

moyan
04-11-2010, 07:02 AM
That guy who keeps stabbing me in the back hinders me from driving

Rose Cozzette
04-13-2010, 06:01 AM
doggone, will keep trying. dont know why i cant seem to get it. sheesh....

Rose Cozzette
04-13-2010, 06:44 AM
here it is finally...305

Rose Cozzette
04-13-2010, 06:46 AM
sure hope you feel better soon. I am less sleepy on the decreased preds but sleep better at night, tho up 2-3 x still.

Sangye
04-13-2010, 11:17 AM
That's really beautiful, Rose! What a great hobby. :)

elephant
04-13-2010, 05:37 PM
Rose you are a artist! Beautiful!

jola57
04-14-2010, 12:46 AM
Rose it is very beautiful, what medium did you use looks like ink.

Rose Cozzette
04-15-2010, 02:43 AM
thank you, i was a woodcarver before weggie, dont think i can do anymore as too shaky and weak, also the dust would be a problem. the cactus represents me in wegeners, the right side is the worst of it and the left is the threat of relapse. the middle is me, the flower but you can see it is small as that is how i feel in the midst of it all. i used ink, i like the starkness of black and white. hope i can at least do drawing now. thanks again for all your feedback.

Sangye
04-15-2010, 02:59 AM
I love your explanation of it. I hope the flower continues to grow and bloom. For everyone with Wegs.

germaine
04-15-2010, 03:04 PM
Thanks, i think my sinuses are better, just dont let up. I get dizzy at times, right side turn of the head a certain way, so have to be careful when up and walking. Started a pred decrease again and also the methotrexate injection. Didnt want any more oral as my poor stomach has taken a beating thru all this. Are you on both of these yet?

I had a bout of dizziness (left benign positional vertigo) - it sounds like you might have it on the right side. You can check it up on the internet which illustrates what I think was called the epley manuver. Just a seiries of head and body twists which cured my dizzyness immediately. Maybe its not the same, but it sure is easy to try and no risk. Germaine

Rose Cozzette
04-17-2010, 05:49 AM
thanks, i will check it out. having a tired day today, hate when it happens cause i am like a limp noodle. ;{

Rose Cozzette
04-17-2010, 05:50 AM
yes, I just seem to need some fertilizer or something. lol may we all bloom!

Lightwarrior
04-17-2010, 06:14 AM
thank you, i was a woodcarver before weggie, dont think i can do anymore as too shaky and weak, also the dust would be a problem. the cactus represents me in wegeners, the right side is the worst of it and the left is the threat of relapse. the middle is me, the flower but you can see it is small as that is how i feel in the midst of it all. i used ink, i like the starkness of black and white. hope i can at least do drawing now. thanks again for all your feedback.

Rose,
Your art is very perceptive and enlightened. I am in awe at your talent.

Rose Cozzette
04-23-2010, 06:14 AM
well thank you. right now i really need my art to keep me motivated. started doing more drawing now and not too bad in spite of my preds shakiness. maybe adds a little to the work with the wavy lines.lol is anyone else out there using art to help with weggies? also is anyone interested in alternative methods ? i know they have helped me, Reiki and MFR to name 2. the theory is that being in a state of ease or relaxed is beneficial in the healing process. please let me know if anyone is interested or has tried successfully with different techniques.

elephant
04-23-2010, 07:04 AM
I find walking outside gives me peace. I would love to do art. My brother and mom are very talented artist. Oh yea, my son is too. He got a Art award and was displayed in a Art museum. I'm bragging. I really am a bad artist! I'm better off throwing paint on a big white sheet of paper. :)

Rose Cozzette
04-27-2010, 02:16 AM
I also enjoyed walking and am just starting to get outside in my yard and walking around it. I sent my daughter to art school and she does web design but i'v never been able to convince her she is talented. sigh... so i pick her brain now. lol hey, try throwing that paint around and who knows what will turn out, art is in the eye of the beholder! going to decrease the preds next week, yay! are you on methxte and if so how did it work for you? i am having more side effects now and want to decrease it, will talk to doc abt it.

Rose Cozzette
05-07-2010, 07:08 AM
its getting really interesting trying to draw now with the hand shakiness, one tiny stroke at a time! has any of you had eye problems on mthrxte? i have such blurred vision now. i lowered my dosage today by 1ml, i think its too strong for me and am having lots of side effects. any comments?

JanW
05-07-2010, 07:45 AM
How many milligrams of mtx are you on, Rose. I haven't had any eye issues -- or other side effects -- on 15 mg/week.

elephant
05-07-2010, 09:17 AM
Rose, you need to let your doctor know. Mabey your having symtoms of Wegeners going on with the eye. It could be another medicine too?

Sangye
05-07-2010, 10:07 AM
Rose, definitely never ever change your drug dosages without your doctor's okay. Blurry vision is probably from the pred. If the pred dose is high enough to cause shakiness, it'll cause blurred vision too. But like Elephant said, let your doctor know. Wegs must be ruled out first.

DEE
05-07-2010, 02:44 PM
i get blurred vision a\nd shakes from preds because it did not happen when taking mtx and does not last as long each time i lower preds DEEx

Rose Cozzette
05-11-2010, 05:55 AM
i am on 3 ml by injection of mtx wkly. i tried to talk with my doc abt it and he wouldnt listen. i may have to change from him, having trouble with his nurse also. she had called in an incorrect Rx on the azathiaprine and i got 2x what was the order, i got pretty sick from it and my liver score went sky high but the doc wouldnt listen again. he said i must have misunderstood but it clearly says on the container waht she called in. so i feel fine, didnt have all the side effects this time. i have had probs in past with meds, even over the counter, and cant seem to take lrger doses but it is a rare doc who will listen. i had a reaction to aleve, zyrtec and several other prescrips. so for some reason my body doesnt like lrger doses or long term use of also. the eye doc said i just need to change my glasses prescrip but i hate to have to get new ones as long as the preds is being lowered. cant afford a new pair every few months.

elephant
05-11-2010, 07:28 AM
You need to find another doctor that you feel comfortable with. One that listens to you! Hope you find a good one soon! How frustrating!

Rose Cozzette
05-14-2010, 06:23 AM
well i see him on the 26th so will see then. having to be seen long term is a challenge, most med personnel want to get you in and out quickly. when i was working rehab i used to have to fight to get more than 6 sessions for my patients and now i see it hasnt changed. talked with my nurse case manager for the insurance and she has been surprisingly good abt keeping me going. having a very tired week, hate when its like this, have to make myself move. ugh.. do you have this problem?

elephant
05-14-2010, 09:04 AM
Rose today I feel like not moving and just laying in bed. I I had to get up and take care of two kids, but right now I am in bed watching TV and on line. Glad you have a Case manager, hope you start to get better and write down your questions for the 26th. Keep your head up!

germaine
05-14-2010, 04:39 PM
Hi Moyan, I understand there is a problem with the contacts I sent you. I am trying to get through to someone there myself, but have not had a reply. I will persist. I have had a great deal of trouble with my computer and did not have any addresses for a while. I hope you are OK. I did try to call you again, but there was no answer. Germaine

Sangye
05-14-2010, 11:07 PM
Germaine, have you seen the thread "Where is Moyan?" She's in the hospital. Jolanta finally tracked her down. You can send Jolanta an email for Moyan and she'll make sure she gets it.

jola57
05-14-2010, 11:13 PM
Hey Germaine, my email is [email protected]. Please send what you have. I will see Moyan this weekend and make sure she gets it.

Rose Cozzette
05-18-2010, 05:54 AM
hope you are feeling better, it took several days for me to start. am not used to having to push just to get ordinary things done and it is frustrating. how old are yur 2 kids? my grandaughter tells me to hurry and get well so we can play again. lol may have a UTI, got my lab results and kidney function went down 10 pts and wbc went up. some scores improved but no wonder i feel tired. oy would love for thngs to settle down to a dull roar, wouldnt you? saw the note on moyan, hope she does ok. take care.... rose

Rose Cozzette
05-26-2010, 01:44 AM
hope you are feeling better, it took several days for me to start. am not used to having to push just to get ordinary things done and it is frustrating. how old are yur 2 kids? my grandaughter tells me to hurry and get well so we can play again. lol may have a UTI, got my lab results and kidney function went down 10 pts and wbc went up. some scores improved but no wonder i feel tired. oy would love for thngs to settle down to a dull roar, wouldnt you? saw the note on moyan, hope she does ok. take care.... rose
HELP! i hope someone can answer me quickly. my rheum doc had blood work done and it shows a kidney problem. so now he wants to raise the preds from 12 1/2 mgs to 50 saying its the only thing taht will correct it. i read that going back on cytoxin is the way. the kidney doc wasnt concerned abt it enough to do anything. what do it do?? the side effects will be awful. i see him tomorrow to talk abt it and hes already upset with me for not just doing it without talking abt it. i am in a real bind.

DEE
05-26-2010, 02:01 AM
hi rose
i had same problem oct last year and my wg specialist changed my meds from 20mg preds to 60mg and from 25mg mxt to 150mg 0f cyotxin on the same day as blood results
he has been dealing with wg for over fifteenyears and has reasearch papers on it he also confirmed diferent treatment with my renal doc
hope this is oof some help
the new treatment soonn began to help kidney problem DEEx

DEE
05-26-2010, 02:04 AM
sorry about the spelling mistakes brain not working on all cylinders today DEEx

Rose Cozzette
05-26-2010, 02:27 AM
what were your side effects? and did he say if the mxt was causing the problem? i read that mxt does cause kidneys to act up. did you stay on that level of preds or taper down and if so how long did it take? i think mxt is a big problem for some of us. i was doing so well until the mxt and now also my eyes are so blurry and of course the stomach distress as with so many meds. thanks.

elephant
05-26-2010, 02:40 AM
Sorry Rose, I think the methotrexate doesn't work on everyone and sometimes the doctors need to put you on a different medicine. If your kidneys are in danger....yes the doctors would increase the prednisone and put you on cytoxan or some other immunosuppressant. The prednisone temporary reduces the inflammation that the WG is causing and lets the other immunosuppresant to kick in.
Do you have a Wegener's specialist and if not...ask your doctor to call one....that is on the Vasculitis List. I love mine at the Cleveland Clinic in Ohio, I know everyone love's their WG specialist. That way you will feel better about the situation, you don't need the added stress.
Rose call your doctor today and ask.

Rose Cozzette
05-26-2010, 02:46 AM
ok, i will. my doc considers he is the expert, said so . i get really undomfortable with anyone who says THEY are the expert instead of consulting with another one. thank you, i feel somewhat better, i was in a real dither. i just want to feel human again and its always one step forward and 3 back. sigh... thank you so much.

DEE
05-26-2010, 03:17 AM
i was on 60mg at the beginning and i am now on 25mg but this is not because of my kidney involvement
i have other problems to deal with to
i know what you mean about going backwards thats just how i feel at the moment
but keep yor chin up hopefuly things will get better for us both soon DEEx

Sangye
05-26-2010, 05:56 AM
Rose, the fact that your doc says he's an expert tells me he isn't. I can't imagine my Wegs doc--a true expert-- referring to himself that way! He's humble.

JanW
05-26-2010, 06:59 AM
I am on mtx, Rose and hadn't heard that it could cause kidney problems -- maybe you are thinking of liver? Liver enzymes levels are checked constantly when you are on mtx. Don't know the dosage you are on but it sounds as though it isn't working for you. I agree with the rest -- they usually want to work with ctx or rtx once there is kidney involvement.

elephant
05-26-2010, 08:28 AM
Methotrexate can cause renal toxicity when taking higher dose...that is one of the reasons I was not put on it because I am on cyclosporine ( immunosuppressant that is also toxic to the kidney ) because I had a kidney transplant. I hope I am making sense. ;)

Rose Cozzette
05-28-2010, 06:17 AM
everyone, thanks for the feedback. the good news is my creatnine dropped back to 1.2 yesterday so am decreasing the preds already and will try for 15 mgs. the doc was more humble this time, i had told him what i was going to be asking before i got there and that seemd to help as he had obviously done some homework before i got there. he explained it all to me in a diagram, how the cytx would be added if the score didnt go down . and will have to try another meds instead of mtx. am doing the preds taper in a weeks time not quickly. my glucose had already gone up and the irritibility was back with a vengeance! and couldnt sleep. am waiting to see if the eye blurriness will also go down now. he is still resistant to my contacting the cleveland clinic but will do anyway. ;}

elephant
05-28-2010, 08:35 AM
Like Sangye stated before that is a red flag, "Resistant" to you contacting Cleveland Clinic. You need to see a Wegeners specialist, and one of your doctors if not him can call. I would try yourself too. Glad your creatine is down to 1.2, that is normal range. Good luck, I know you can do this. :)

Sangye
05-28-2010, 12:58 PM
I agree. Please don't stay with a doc who resists what is in your best interest. I know it's a pain to start over with a new do, but you don't always get a second chance with Wegs. If a doc messes up it can kill you or at the least damage you. I'm living proof.

My Wegs doc never attempts to treat/ manage aspects that my other specialists handle. He sends me right to them. That's the sign of a competent and trustworthy doctor.

Rose Cozzette
05-31-2010, 02:51 AM
yeah, this docs ego is growing by leaps and bounds. i got his report and he says i am depressed, tho i am not. its a depressing disease but i manage to keep trucking along and am doing more in spite of it all. think its time to move on to a new doc who will listen. he asked if i trusted my weggie contacts more than the med field, i said the weggies because we are the ones who know what we experience, he didnt like that answer but didnt say anything. still feel all discombobulated with the meds changes. so onward and upward and see my reg. doc hoefully next week. he is good and listens and responds accordingly. we are contacting cleveland so will let you know.

elephant
05-31-2010, 03:15 AM
Yahoo Rose, so glad you are moving on! Glad your contacting the Cleveland Clinic too. I am going in June, and looking forward to it! Thanks for the update!

Doug
05-31-2010, 02:42 PM
Rose- It takes a pretty put-together person to take on a doctor when taking on a doctor is needed. It builds confidence, and it helps weed out the doctors who just don't get what it is like to have this disease. Reading a book or going to a website of even the best resource will NOT prepare a doctor (or us) for every contingency. The forum weggies, at least, are exposed to the incredible diversity of experiences others had. Until I came on the forum a little over a year ago, I didn't realize how different each weggie's experience with the disease is. It is important, regardless, to have a team of specialists around you who inspire confidence, who understand you are there best resource for how your WG is doing, and who work with you as an important part of the team working to restore you to a new normal, preferably remission. Good luck with Cleveland Clinic! I'm rooting for you!

Sangye
06-01-2010, 12:33 AM
Rose, I'm SO glad you're taking control of your care. Leave that guy behind and head for CC. Then you won't have to trust us more than your docs.

Rose Cozzette
06-02-2010, 07:15 AM
yeah, time to take action! how did you set up your appt. with Cleveland? their web site says they will take my insurance. felt poorly all weekend with glucose drops and then rises. see my reg. doc tomorrow so will discuss all with him. he at least listens. let me know how you are doing. :}

Rose Cozzette
06-02-2010, 07:22 AM
thank you. i did work with docs for almost 20 yrs and learned to not take them too seriously and to question when needed. we had some good "discussions" at times and personally , after being treated like i was ignorant abt my own health, i said i am a whole person so matter what condition i am in and deserve to be treated as whole. needless to say i have been thru a few docs and have gotten used to changing as i need to. the good ones support the pt. and dont let egos get in the way. i do trust the weggies perspective as we are in the trenches and can provide valuable info for the med. professionals. if they will listen.

Rose Cozzette
06-02-2010, 07:26 AM
i told the doc i am going to die anyway so i might as well die on my own terms. he jsut looked at me. they dont like to talk abt death, like its their fault. seems its a lot harder to die than live sometimes. lol i know i'm difficult at times but i also shouldnt have to fight for my rights esp. when so sick. where's my advocate? sigh, my anger is a good thing right now.

elephant
06-02-2010, 07:50 AM
Anger is good when you feel like you not being treated right. It has worked for me and doctors take notice! I have come out and said," do you have this disease? Do you know what it feels like? On and on and they back off.

Doug
06-02-2010, 12:48 PM
i told the doc i am going to die anyway so i might as well die on my own terms. he jsut looked at me. they dont like to talk abt death, like its their fault. seems its a lot harder to die than live sometimes. lol i know i'm difficult at times but i also shouldnt have to fight for my rights esp. when so sick. where's my advocate? sigh, my anger is a good thing right now.

Rose- Every time I was hospitalized, I'd get the packet with the blank prime directive form in it, and I'd tell myself, "You really should establish, legally, what you want done if you are beyond survival." I still haven't made one out. Odd, too, because death isn't what I fear, it's being kept alive beyond any reasonable hope of survival with any significant quality of life. That is reason enough to make sure I take care of this detail before I need it!

Lola
06-03-2010, 03:33 AM
I really like the way you put your thoughts, Rose...dying on your own terms. That says it all!

Rose Cozzette
06-07-2010, 06:41 AM
after i got weggies i changed my directive to just 2 days of being kept alive if it gets bad, i decided no sense in messing around. i too dont fear death, just losing all quality of life. i worked with hospice also and saw how it can get if nothing legal is done. makes it really hard for the family. getting in touch with the cleveland clinic this week, also ready to quit my rheumy doc, he sent a letter to me wanting to put me back on mxt after if started doing things to my kidneys and we had discussed going on oral cytoxin. i feel like i am no longer much of a priority to him. sheesh. please do your directive! :}

Rose Cozzette
06-07-2010, 06:43 AM
thanks, everyone shuld have the choice of living and dying on their own terms.

Rose Cozzette
06-07-2010, 06:46 AM
some days my anger is all i have, so might as well make it work for me. and it gives me focus to plan because i believe we create our existance through thought. staying positive is a struggle but is possible if i create that. i thank each of you for being here for me to vent to and share with. hugs!!

elephant
06-07-2010, 06:57 AM
Hey Rose, vent all you want and it is good to get it out. We are human and we need to get things out, not only are we dealing with WG but our other daily lives..
So glad you are calling the Cleveland Clinic. I will be there mid June. Seeing alot of doctors next week, scan of my thyroid tomorrow am. Hoping I don't have to do a biopsy. But if I do, I will grin and bear it.
Yes everyone should have a living will for health care, I don't....I should. Shame on me.

Rose Cozzette
06-07-2010, 07:02 AM
please let me know how it goes for you in cleveland. sending you thoughts of light and love...

Rose Cozzette
06-10-2010, 12:58 AM
ok, after the rheumy doc told me i should stop the mxt, he sends a letter saying i should start on it again. so now i'm weighing whether i should further ruin my kidneys or go on cytoxin and risk bladder cancer. any thoughts? waiting on my insurance rep to see abt them paying for cleveland. hope on e of you can help me out on choosing a meds and how long can i be off them before i see problems. oyoyoy

JanW
06-10-2010, 01:18 AM
Wow, Rose, I don't know if any of us here are qualified to say which drug you should be on without knowing your history. I hope you get some answers soon -- your case really needs to be managed by an expert.

Rose Cozzette
06-10-2010, 01:27 AM
i know, i dont know what to do. it will take a month to get into the cleveland clinic. i was off any meds earlier this year for abt 6 wks and had to end up on antibiotics for 20 days to stop some infection. the delay was due to this same doc being so slow. i actually feel pretty good not on any of the heavy duty meds. i'm still on preds. just wanted to see what anyone else has been thru. tho i know we are so unique in our cases. sigh...

elephant
06-10-2010, 08:45 AM
Yea, you really need to get to an expert. They will figure out the perfect medicine for you. You can't get in sooner?

Rose Cozzette
06-11-2010, 06:34 AM
i am scheduled to be in cleveland on july 8, could have gotten in sooner but had to get dates for my daughter and hubby to work. seeing dr. langford. i was pleasantly surprised that my insurance encouraged me to go there. i'm excited. decided to go with oral cytoxin and start today. hope it goes well. did you use it and how did it go for you? supposed to do 100mg one day and 50 the next, etc. also doing septra. would like to meet other weggies there.

Sangye
06-11-2010, 06:50 AM
I never started ctx like that. Both times I was on it (different docs) I was told to do 50 mg for a few days, then increase to 100 mg for a few days and then increase to 150mg.

I hope it works for you, Rose.

Rose Cozzette
06-11-2010, 07:22 AM
this doc seems to start me too high on dosages. i will call him on it and see abt starting at 50. he has always done this, not even telling me when he was increasing the chemo. and the azathiaprine was too high and i got sick right away. and he told me a too high dosage for potassium and i got sick. oy, do need a new doc. thanks for your input.

elephant
06-11-2010, 07:47 AM
Hi Rose, I see Dr Langford next week. I am really excited for you. I can't wait to see what she says about the best treatment for you. Hang in there, your doing a great job. It is a full time job juggling our WG.

DEE
06-11-2010, 03:56 PM
hi Rose i take cyclo 150mg a day with 22mg of preds at the moment and have done for 7mth remember to drink plenty off fluids !!!! good luck hope it makes a difference to you
DEEx

Rose Cozzette
06-15-2010, 06:11 AM
started the cytx and having major stomach distress. pain is a pain. lol i am excited for you too. hope it goes well. got my info packet from cleveland. take care.

Rose Cozzette
06-15-2010, 06:16 AM
i am drinking more so you know where i am all the time. the cytxn is doing a number on my stomach. i am interested to know what the cytxn does long term to our whole system. certainly dont want to trade one woe for another. have you been in full remission on this present treatment? how is your energy level? wish my eyes would clear up, everything is blurry. i know the preds is mostly to blame but think the methtrxte also contributed. and i i've been off that for over 3 wks but no change back.

DEE
06-15-2010, 06:34 AM
rose now not got there yet a couple of times nearly by the tip of my fingers then something jumps up and bites again
wg consult keeps saying nearly cxt makes me more tired than mxt but touch wood does not effect stomach i think im lucky with side effects from meds other than preds
thats why desperate to get onto lower does but as we say were all different lets hope it works quicker for you yake care DEE x

DEE
06-15-2010, 06:36 AM
oops sorry spelling always goes wrong when im tired meant take care x

Rose Cozzette
06-18-2010, 06:02 AM
i know what you mean. i am staying on 50mg of cytx, stomach better but being very careful. kidney docs are fooling around and not getting back to me much. antibiotic caused the blood thinner to go up so adjusting that now. busy getting all my records for cleveland, is a lot! going to the coumadin clinic has helped a lot as the pharmicist has given me alot of info i wasnt aware of , esp for drug interactions. take care and rest up...

DEE
06-18-2010, 06:19 AM
offf for few days after lowering but had a much better day today take care of you DEEx

Jack
06-18-2010, 06:28 AM
i am interested to know what the cytxn does long term to our whole system. certainly dont want to trade one woe for another.
Unfortunately the risks associated with taking ctx are very serious and quite significant. The worst are probably the risks of cancers, in particular Leukemia and bladder cancer. The increased risk from these does not go away once treatment has stopped, but stays with you for life. The risk is largely dependent on quantity taken and length of treatment. In my own case it is considered to be too high a risk to treat me any further with this drug because I have had several sessions of it already following relapses. It can also cause infertility and birth defects as well as a host of short term side effects - not nice stuff, but necessary for many of us if the Wegener's is to be knocked on the head.

Rose Cozzette
06-18-2010, 06:40 AM
wonderful. thats what i mean abt trading one woe for another. i will check out the ctx with cleveland to see abt something else. i figured i would take it for now til i get there and then try for a new drug. would sure like to know more abt the remission stage and how to stay there w/o killing another part of my body to do so. i have already told all my docs that quality of life is more important to me than quantity. of course some disagree...

Jack
06-18-2010, 07:01 AM
There are new drugs becoming available such as Rituximab that are effective for some people, but the alternative until recently has been to die quite quickly from Wegener's. Not much of a choice really! As far as quality over quantity, yes, I agree fully. However, that is not an immediate choice that has to be made for most of us.

Sangye
06-18-2010, 07:03 AM
Rose, the "quality vs quantity of life" argument doesn't apply very well when deciding which drug to use for Wegs. Not doing the proper treatment will destroy both quality and quantity of life.

For the first 7-8 months after dx, I was only told I needed to do a year of ctx and pred and that was it. The 7-8 months on cytx/pred and 2 months on mtx had left me worse than when I began (which was near death). Nevertheless, I thought I was done with treatment. I had some complications and started going to Mayo AZ, where the doc recommended Cellcept for at least 2 years. I was completely shocked and almost refused any further treatment. It took me awhile to realize that Wegs won't necessarily kill you quickly or in a predictable way like cancer often does. It can drag on for years and if you change your mind the damage is permanent. Once I really got that, I was willing to do whatever was necessary. Ctx stinks. Rtx stinks. All the drugs stink and they all have terrible side effects and cause damage. You just have to go with the drug that works and mop up the rest later.

My Wegs doc has echoed this on numerous occasions and I hope the CC docs help you see that it's worth it to get through the stinkin' drugs.

elephant
06-18-2010, 07:52 AM
The wegs doctors and kidney doctor seem to think that the cyclosporine ( been on for 21 years) and cellcept and 8 prednisone put me in remission. They really don't want me off this...it's going to be a wait and see.

Jack
06-18-2010, 06:45 PM
That is the sort of treatment I've been having for the past 20 years and I can't imagine that it will ever change much unless I take a turn for the worse. If I try dropping any of the meds or lowering the dose, my symptoms start coming back.

janene
06-18-2010, 07:53 PM
Hi.
this is Janene. My doctor has now switched me to Imuran. I noticed you take this too.. Did it make you nauseus?? I am only on one tablet/day and he wants to increase it to 2 tablets... If you were sick did it settle down or should I tell him and try something else. thanks

Rose Cozzette
06-23-2010, 05:56 AM
your case sounds similar to most, which is what i dont like. take this and that and then wait and see. i reallize they are doing research to find the best meds but we all are guinea pigs. and are they doing in depth studies of ALL weggies for complete data analysis. i know they are not so therein comes the frustration of feeling left out of the process. instead we are just expected to fall in line with whatever is current. i know they have made gains but i want to be an active part of the research and i want them to listen to us, WE know what it is like to be in this illness.

Rose Cozzette
06-23-2010, 06:00 AM
everything makes me nauseous they put me on. when i was getting iv cytoxin i insisted on being given strong nausea meds twice on that day and it made all the difference in my comfort level. it also was iv, i find that oral meds dont work as well for nausea. just looking for relief when it gets bad.

Rose Cozzette
06-23-2010, 06:01 AM
this is a very strange disease, nothing predictable abt it. how are you feeling now?

Rose Cozzette
06-23-2010, 06:05 AM
i mind that my choices seem to have been taken from me. i am told to do this and that without my input, and if i give my opinion then i'm a bad patient. i suppose i'm spitting into the wind but also know i wont give in nor go quietly into the night. lol

Sangye
06-23-2010, 06:16 AM
your case sounds similar to most, which is what i dont like. take this and that and then wait and see. i reallize they are doing research to find the best meds but we all are guinea pigs. and are they doing in depth studies of ALL weggies for complete data analysis. i know they are not so therein comes the frustration of feeling left out of the process. instead we are just expected to fall in line with whatever is current. i know they have made gains but i want to be an active part of the research and i want them to listen to us, WE know what it is like to be in this illness.

Rose, I understand your frustration. The best you can hope for is a Wegs specialist who is respectful of you and works with you to give you the best results. The only thing any doctor can do to treat any disease is to give you a drug (or surgery) and wait to see if it works. Wegs is no different.

It's unrealistic to expect them to study every single Weggie. Even if they did, no one can predict how a drug will affect a particular person. Even aspirin is not tolerated the same by everyone. Weggies are guinea pigs. But so is every person in the world on any pharmaceutical drug. No matter how long a drug is on the market, there is always new info about its long-term effects. Drugs are unnatural. The concept of giving a dose based solely on a patient's weight is unnatural, too. (Think of how different 2 people are, even if they weigh the same) And most drug dosages are not even based on weight! Until they can base a medicine and dose on an individual's biochemistry, genetics, metabolism, absorption, etc... it's trial and error.

This is why it's so important for us to minimize the use of drugs whenever possible. For example, if you have nausea, thoroughly explore natural remedies before taking anti-nausea drugs. Question your docs about every drug they offer you. If your doc doesn't respond well to your questions, find a new one.

Rose Cozzette
06-23-2010, 06:24 AM
ah, you are my voice of reason! i never needed drugs before and did use natural remedies and now i feel so polluted and toxic. not me anymore.

Sangye
06-23-2010, 06:31 AM
I totally understand that, Rose. Before I was dx'ed I didn't even take aspirin. Three months before I was dx'ed, my lungs began hemorrhaging. We didn't know that, but just thought I had pneumonia. I was seeing only holistic physicians as always. We tried every holistic remedy but I got worse. Finally we made the HUGE decision to take one course of antibiotics. It seems hilarious now, but at the time my docs and I really struggled with that decision.

It was less than one month later that I was rushed to the ER by my new pulmy himself-- transfused with blood, started on 1,000 mg IV solumedrol in the ICU and told I would start ctx in another week. My world came crashing down. I know how it is, Rose. We have to mourn that loss like any other loss, but we can't let it stand in the way of taking care of the Wegs in the only way science knows how.

Rose Cozzette
06-23-2010, 06:36 AM
i guess i am still fighting the mourning process, hadnt thought of it that way. the next step then should be acceptance but boy am i struggling with that one! i keep making future plans but its always in the back of my mind that i have limited time. silly really because there are no guarantees in life nor in death. sigh... i am definately too much alone, think tooo much.

Sangye
06-23-2010, 06:44 AM
There are so many layers of loss to being dx'ed with something like Wegs. Four years into it, I'm much better at dealing with some of the losses but still struggle terribly with other aspects. Because I haven't had much progress and I can still barely do anything, I struggle with the loss of physical activity, exercise, just being able to use my body and feel alive. I feel perpetually angry about it, like a child with a broken leg who can't run around like everyone else. It's understandable.

Rose Cozzette
06-23-2010, 06:48 AM
thats it in a nutshell. i remember when i was dxed and looked in the mirror, thinking that is somebody but i dont know her. dont want to know her. so i woudnt let my pic be taken and of course didnt care how i dressed. my daughter finally bought a couple skirts and tops for me and siad its time to wear real clothes so i started but didnt feel better. i never reallized how image conscious i was until then. feels so odd and not real.

Rose Cozzette
06-30-2010, 06:45 AM
so how are you doing now? i still feel docs overdose us, esp women. i have stayed on 50mg of oral cytoxin as it contd to bother my stomach, still have diarrhea almost daily, and pain. look forward to getting off it and try another one. keep in touch...

Rose Cozzette
06-30-2010, 06:47 AM
sp was yur trip a good one? i go next week. and have a list of questions. the cytoxin is doing a job on my stomach so look forward to trying something else. rose

Sangye
06-30-2010, 06:56 AM
Rose, if you use the "Reply with Quote" it's a lot easier to tell who you're talking to. :)

What other drug are they considering if you're going off ctx?

Rose Cozzette
06-30-2010, 07:00 AM
thats what i want to consult abt at cleveland. looks like either cellcept or rituximab right now. really dont want anything but know i have to take something. and thanks for the way to reply, i wondered what that was for. ;}

What other drug are they considering if you're going off ctx?[/QUOTE]

Sangye
06-30-2010, 07:30 AM
Well, none of us wants to be on any drugs, but we wouldn't be around long if we weren't!

You're almost there using the "Reply with Quote."
1) Click on "Reply with Quote"
2) This automatically puts the entire quote in your reply and also automatically indicates who the quote came from.
3) Type in your reply after the block of text that appears.

If you only want to use part of the quote, delete the part you don't want. You must keep the beginning and end words and symbols that begin and end the quote.

me2
06-30-2010, 08:10 AM
[QUOTE=Sangye;18421!
You're almost there using the "Reply with Quote."
If you only want to use part of the quote, delete the part you don't want. You must keep the beginning and end words and symbols that begin and end the quote.[/QUOTE]

Ok, here is my debute using the reply with quote feature. I didn't know how to work it, thanks for the tutoria Sangye.
I haven't read this whole thread but I had to comment on what I am reading at the end of it here. I TOO was Mr Natural, no aspirin for me, its just a flesh wound, I still have nine other fingers (just kidding about the fingers).
I too drove myself into a terrible depth of disease by clinging to a drug free life. It is a very long story but a great turning point came many years later when a fellow Weggie and lover of nature gave me a talking too and said I had to let go of the idea of not being on drugs and shift my attention to purely what is most healthy for me - sometimes that is drugs. If drugs can make me more healthy then they are my friends.
It is still ok and good to desire as few drugs as possible but never at the expense of my well being.
I have come to view my condition as a two sided coin. On one side I must deal with disease and on the other I must promote my health. Reconciling the two is not always easy or simple but I must not let one side blind me to the other.

Some disease responds well to promotion of health, like diabetes. Other disease almost completly ignore your health and will kill you no matter how strong you were, how good your diet, what herbs you use, how much you exercise and take care of yourself -Wegener's is one of those.
I was almost killed by a Naturopath who believed that my disease could be treated with the promotion of health. I wanted to believe it too and share some of the responsibility for poor choices. However, I was simply trying to help myself, not hanging a shingle out taking responsibility for sick people in exchange for their money claiming to be a competent practioner of medicne. (Ok, I'm still angry about that , I'll quit now. ha)
I just had to throw that in so you know I speak from deep experience.
That, and I just had a cytoxan infusion yesterday along with other drugs that is messing with my mind.
Rose, I am not able to take daily cytoxan (due to previous bladder damage from thirty years ago when I took cytoxan daily for almost two years) and that is why I do inpatient infusions once every two weeks along with Mesna to protect my bladder. I wonder if a simular idea would be helpful for your situation ? Its another very long story but my regular doc did not tell about this Cytoxan protocol and I was led down some ineffective treatment paths until I found out about this way of using cytoxan. My own knowlege of Cytoxan was very dated and it never occured to me that there were options.

Sangye
06-30-2010, 08:52 AM
(I dunno why the Reply with Quote didn't work, Kirk.)

Using natural remedies almost killed me, too. I didn't know I had Wegs, but I was unbelievably pig-headed about seeking medical attention. Because I'm a holistic physician and should have known better, I can blame no one but me. One of my naturopaths wanted me to see an MD a few months before I got dx'ed. I talked him into continuing to treat me.

Because it almost killed me, it really proved to me that natural remedies were not an option. Had I gotten dx'ed before I became so ill, I might not have gone on the drugs.

I've come a long way in my acceptance of the Wegs drugs. The only one I still fight is the pred. Aside from the damage and side effects, the main reason I continue to struggle with pred is that even my holistic buddies can't figure out how we can repair my adrenals with the Wegs. It's easy for a non-Weggie.

julia
06-30-2010, 09:53 AM
If you only want to use part of the quote, delete the part you don't want. You must keep the beginning and end words and symbols that begin and end the quote.

Nothing to add just testing the quote instructions.

Sangye
06-30-2010, 10:02 AM
There will be a Pop Quiz on the quote instructions sometime this week. :D

elephant
06-30-2010, 10:15 AM
I can't wait to take the quiz! :)

LisaMarie
06-30-2010, 12:13 PM
(I dunno why the Reply with Quote didn't work, Kirk.)

Using natural remedies almost killed me, too. I didn't know I had Wegs, but I was unbelievably pig-headed about seeking medical attention. Because I'm a holistic physician and should have known better, I can blame no one but me. One of my naturopaths wanted me to see an MD a few months before I got dx'ed. I talked him into continuing to treat me.

Because it almost killed me, it really proved to me that natural remedies were not an option. Had I gotten dx'ed before I became so ill, I might not have gone on the drugs.

I've come a long way in my acceptance of the Wegs drugs. The only one I still fight is the pred. Aside from the damage and side effects, the main reason I continue to struggle with pred is that even my holistic buddies can't figure out how we can repair my adrenals with the Wegs. It's easy for a non-Weggie.

I feel u ...I try to avoid drugs at all cost....I use lemon drops and ginger for nausea....it works on occassion....I pray can trust my rheum doc and that Dr Abdou will take me as a patient...I m sure his nurse won't take 2-4 days to return a call......Mayo doesn't seem so far today...lol

Rose Cozzette
07-03-2010, 06:46 AM
Well, none of us wants to be on any drugs, but we wouldn't be around long if we weren't!

You're almost there using the "Reply with Quote."
1) Click on "Reply with Quote"
2) This automatically puts the entire quote in your reply and also automatically indicates who the quote came from.
3) Type in your reply after the block of text that appears.

If you only want to use part of the quote, delete the part you don't want. You must keep the beginning and end words and symbols that begin and end the quote. thanks, i will get it right yet. brain feels fuzzier on cytxn. oy

Sangye
07-03-2010, 09:43 AM
You got it!! Whooya! :D

Rose Cozzette
07-06-2010, 06:42 AM
Ok, here is my debute using the reply with quote feature. I didn't know how to work it, thanks for the tutoria Sangye.
I haven't read this whole thread but I had to comment on what I am reading at the end of it here. I TOO was Mr Natural, no aspirin for me, its just a flesh wound, I still have nine other fingers (just kidding about the fingers).
I too drove myself into a terrible depth of disease by clinging to a drug free life. It is a very long story but a great turning point came many years later when a fellow Weggie and lover of nature gave me a talking too and said I had to let go of the idea of not being on drugs and shift my attention to purely what is most healthy for me - sometimes that is drugs. If drugs can make me more healthy then they are my friends.
It is still ok and good to desire as few drugs as possible but never at the expense of my well being.
I have come to view my condition as a two sided coin. On one side I must deal with disease and on the other I must promote my health. Reconciling the two is not always easy or simple but I must not let one side blind me to the other.

Some disease responds well to promotion of health, like diabetes. Other disease almost completly ignore your health and will kill you no matter how strong you were, how good your diet, what herbs you use, how much you exercise and take care of yourself -Wegener's is one of those.
I was almost killed by a Naturopath who believed that my disease could be treated with the promotion of health. I wanted to believe it too and share some of the responsibility for poor choices. However, I was simply trying to help myself, not hanging a shingle out taking responsibility for sick people in exchange for their money claiming to be a competent practioner of medicne. (Ok, I'm still angry about that , I'll quit now. ha)
I just had to throw that in so you know I speak from deep experience.
That, and I just had a cytoxan infusion yesterday along with other drugs that is messing with my mind.
Rose, I am not able to take daily cytoxan (due to previous bladder damage from thirty years ago when I took cytoxan daily for almost two years) and that is why I do inpatient infusions once every two weeks along with Mesna to protect my bladder. I wonder if a simular idea would be helpful for your situation ? Its another very long story but my regular doc did not tell about this Cytoxan protocol and I was led down some ineffective treatment paths until I found out about this way of using cytoxan. My own knowlege of Cytoxan was very dated and it never occured to me that there were options. my program was like yours and i finished with the iv and then tried azrothiaprine which hurt my liver and then methoxte which hurt my kidneys so went on oral cytoxin but dont want to stay on it. i feel its too dnagerous in the long run as you found out. so to cleveland this week and see what else i can try. i feel stronger tho still on 15 mgs of preds and still diabetic and irritable etc. thanks for sharing.

Rose Cozzette
07-06-2010, 06:46 AM
I feel u ...I try to avoid drugs at all cost....I use lemon drops and ginger for nausea....it works on occassion....I pray can trust my rheum doc and that Dr Abdou will take me as a patient...I m sure his nurse won't take 2-4 days to return a call......Mayo doesn't seem so far today...lol i also tried ginger for the stomach but only works a little. one element we all seem to have in common is being natural thinking in our approach to health, now why hasnt it worked?? oy i also use Reiki and myofascialtherapy and i know they have helped.

Rose Cozzette
07-06-2010, 06:50 AM
(I dunno why the Reply with Quote didn't work, Kirk.)

Using natural remedies almost killed me, too. I didn't know I had Wegs, but I was unbelievably pig-headed about seeking medical attention. Because I'm a holistic physician and should have known better, I can blame no one but me. One of my naturopaths wanted me to see an MD a few months before I got dx'ed. I talked him into continuing to treat me.

Because it almost killed me, it really proved to me that natural remedies were not an option. Had I gotten dx'ed before I became so ill, I might not have gone on the drugs.

I've come a long way in my acceptance of the Wegs drugs. The only one I still fight is the pred. Aside from the damage and side effects, the main reason I continue to struggle with pred is that even my holistic buddies can't figure out how we can repair my adrenals with the Wegs. It's easy for a non-Weggie.
well you can tell i am still struggling with acceptance of drugs, mostly because they cause so much damage somewhere else in the body. one doc told me research is working on something to replace preds but didnt know how far out that was. now is good....

pberggren1
07-06-2010, 08:03 AM
I hope there isn't a test coming up soon now!

I hate studying for tests, especially blood and urine tests. I always seem to do poorly on those!

Jack
07-06-2010, 05:19 PM
:D:D
Me too!

Rose Cozzette
07-13-2010, 06:01 AM
well you can tell i am still struggling with acceptance of drugs, mostly because they cause so much damage somewhere else in the body. one doc told me research is working on something to replace preds but didnt know how far out that was. now is good.... ok, am back from cleveland, hot and humid! dr. said i am doing well, should get off the ctxn and start cellcept, not to dec. preds till on it, shuld see liver doc and ENT as could be concerns abt my vocal quality, so i feel good abt being there but no magic bullets. lol cytxn is making me sicker to my stomach, see the old rheumy doc next week and see abt switching to new one in denver area as recommended by dr. langford. i liked her, had 3 hrs with them and very thorough in taking my history. offered to be in research but they like one to be in relapse to study, darn...

JanW
07-13-2010, 06:07 AM
Good on you for making it to Cleveland, Rose.

Definitely see about the vocal quality as sometimes that can be a warning sign with stenosis, and if you have it, you certainly want to know about it.

elephant
07-13-2010, 07:57 AM
Rose so glad you met Dr Langford. I am on cellcept too, taking 2000 mg a day and tolerating it well. Glad you will be off cytoxan.

Sangye
07-13-2010, 11:26 AM
That's great news, Rose. I'm so happy you're in excellent hands now. Vocal quality could be related to stenosis but it often is caused by acid reflux irritating the vocal chords, or even just by general weakness. When I've been really wiped out I get quite hoarse. It passes and my voice returns to normal.

Rose Cozzette
07-15-2010, 05:29 AM
Rose so glad you met Dr Langford. I am on cellcept too, taking 2000 mg a day and tolerating it well. Glad you will be off cytoxan. glad you told me how much cellcept you are on, had no idea what is usual. and that you tolerate it. i have cut back on the cytoxin as am having so much stomach stuff on it and do see the rheumy next week. trying to get on with the new doc in denver area but will take time as they are so swamped. did tell them i plan to move there so that will help, plus being a weggie. lol do you feel you got what you needed in cleveland? i did feel reassured but of course want more. sigh...

Rose Cozzette
07-15-2010, 05:32 AM
That's great news, Rose. I'm so happy you're in excellent hands now. Vocal quality could be related to stenosis but it often is caused by acid reflux irritating the vocal chords, or even just by general weakness. When I've been really wiped out I get quite hoarse. It passes and my voice returns to normal.
my vocal quality has gotten worse and i did have barretts esophagus in the past so know i need to be alert abt this. will check with my ent so see if he has another doc to recommend.

Rose Cozzette
07-15-2010, 05:36 AM
Good on you for making it to Cleveland, Rose.

Definitely see about the vocal quality as sometimes that can be a warning sign with stenosis, and if you have it, you certainly want to know about it.
yeah, having been a sp therapist i know the dangers of not keeping on top of it. it feels like little "things" are running around in my body saying where do i go next? what else can i attack and bother? sheesh...