Lessons Learned

[Sangye]

I saw Dr Seo today and got good news, bad news and answers to a lot of our questions. He's such a kind and compassionate doctor, so patient. I arrived in a pool of tears and spent the entire appointment crying, but he took time to answer my questions, explain everything and reassure me. I'm unbelievably lucky to have him. This week is my 4 year anniversary of being dx'ed, and I had hoped to be in good shape to celebrate it.

The good news: The rtx is working very well to contain the Wegs. His plan is to repeat it yearly, and he doesn't think I'll need to go on another immunosuppressant in the meantime. I thought he was going to put me back on Cellcept until the next round of rtx, so this was great news.

The bad news: When I dropped the pred below 1mg a few weeks ago, my adrenals couldn't kick in and I was in seriously bad shape. It took me several days to realize it (there were other things going on that confused the picture), and I've been bumping it back up ever since. I'm at 1.5mg but I still feel awful and have been pretty depressed the past several days. I couldn't figure out why I felt great at 1.5mg before but feel awful now. And I had no idea what to do about it.

Dr Seo explained that when you drop pred too low for your adrenals to kick in, you have to increase the dose all the way back up and leave it there for 6 months before trying to taper again. I was totally shocked to hear this.

Even though I started at 4mg, he wants me to go back on 3mg. I felt awful on 3mg, so he's willing to let me increase it slowly from 1.5mg to see if something below 3 works for me. He said that when I first noticed the 0.75mg was too low, if I had increased it to 1mg within 2 days I could have avoided this increase. Waiting 5 days was too long.

Fortunately, the pred drop did not wake up the Wegs. It just zapped my adrenals. The fact that I'm under constant high stress made it even worse, and may mean I can never get below 1mg. This didn't surprise me.

Now listen up, fellow taperers. The first sign I had that the pred dose was too low was a sudden feeling of extreme sleepiness in the afternoon the first day of the lower dose. It felt like someone gave me anaesthetic and wouldn't ease up. It happened the 2nd day, too. By the 3rd day it was constant. Dr Seo explained that when you get to these very low doses you might need to split the daily dose into morning and evening. The low doses of pred don't last long, so by the afternoon your adrenals are getting nothing.

As far as my future, Dr Seo said there are 2 areas to control: 1) Get Wegs under control and 2) Get adrenals functioning (off pred or on a dose that makes them happy). For 4 years we haven't had either area under control The Wegs is behaving and now we just need to get my adrenals happy. Then we'll be at "Ground Zero" and I can begin-- for the first time-- to get stronger. Through a lot of tears I asked if he thought I could ever work as a chiropractor again, and he said "Of course." That was so amazing to hear, because I really couldn't see how that could happen again.

I'll share the tons of info he gave me about Wegs and the drugs in the next post.

[Sangye]

Other info from Dr Seo:

1) About 35-40% of Weggies never go into remission.

2) People who flare tend to have repeat flares

3) The longest most people are able to stay in remission is 10 yrs.

4) Weggies with kidney-only involvement (even very severe) are easy to get into a solid, lasting remission.

5) Those with sinus involvement have the most difficulty controlling symptoms and disease activity in that area.

6) I asked about a trend I've noticed in our group. Many people with severe kidney (and sometimes lung) involvement who received pheresis seem to have gone into remission faster than others who didn't. He said he thinks it's due more to the ctx/pred they got along with the pheresis. Hitting the disease hard with major ctx and major pred is the best way to get Wegs into a solid remission (versus stringing it along with mtx or other mild treatments). The downside--incredible toxicity and risks of that treatment.

7) Study on using pheresis for moderate disease activity involving kidney and lung will be starting late this year. Pheresis is usually only used for kidney involvement.

There was more... I'm just pulling all this out of my head.

[elephant]

Congrats Sangye! That is amazing and wonderful news....so glad to hear that you will not be on cellcept and be able to go back to work some day. This is such a wonderful moment...I am so happy....that I have tears coming down on the computer.
Thanks so much for being there for us and giving all of us very educational information that we need. :)

[Sangye]

Aww Elephant, you are so kind. I don't feel like celebrating because of the pred thing (and because I feel unbelievably lousy) but it was good to hear the Wegs is finally playing nice. Halfway there. :)

[pberggren1]

WOW!!!

We are so blessed to have you Sangye!!!

That is very good information.

[Lightwarrior]

Aww Elephant, you are so kind. I don't feel like celebrating because of the pred thing (and because I feel unbelievably lousy) but it was good to hear the Wegs is finally playing nice. Halfway there. :)

Sangye, Thank goodness you saw Dr. Seo before you were in full blown adrenal crisis and past the point of no return. I know you feel badly now, but it is incredible news that you may return to work at doing what you love. I agree with phil and elephant, we are so blessed to have you, even as you are struggling you are teaching us. You are amazing. Namaste

[Sangye]

Thanks, you guys.

Dr Seo very kindly told me how lucky I am to be able to get rtx. He has patients whose insurance won't approve it. If I didn't have rtx, I wouldn't have survived because the ctx was destroying my bone marrow and not controlling the Wegs. Sometimes we need to be reminded of how blessed we are. And by "we" I mean "me."

[Jack]

Perhaps not the exact news you wanted to hear, but it still sounds like good progress. Even increasing your knowledge and understanding are a great move forward.

I can fully understand the Pred information because I've experienced it myself. After dropping my dose and encountering problems, it has taken months to fully recover. I have also been quite shocked at how short lived the effects of Pred are. As I have mentioned before, if I forget to take my dose, I feel unwell by the afternoon! I also tried splitting my dose once to see if it would help with the "slow to get started in the morning" syndrome. It did not seem to have any effect at the time, but perhaps I did not give it long enough.

I think I am a classic example of point 6 above. My Wegener's was treated very hard when first diagnose (I was near death!) and it work quickly and very well, but I'm probably suffering for it now. :(

Looking back now at my early years with this disease when I was having repeat relapses, I was woefully ignorant (pre-internet!). If I had known more, I would have been in a better position to help my docs with management by recognising symptoms earlier and having a good idea about the cause.

[DEE]

Congratulation Sangye glad to hear things are moving forward for you
thanks for been there for us DEEx

[katarzena]

I'm glad the things are working well for you and that you will be able to work again! :)
I don't understand the 40% of people that never get into remission. What happens with them?

[Brooke]

Sangye, I am very glad to hear that you do not have to be on Cellcept and that you can get back to work! That is great news! Try not to worry about the prednisone, you will get where you want to be!! I guess we can all take this as a lesson learned :)
I hope you start feeling better soon, emotionally and physically.

[Sangye]

While I'm happy to hear that I should be able to work again, it's still a very long way away. As in probably more than a year--best case scenario. But hey, I'll take it. I really can't bear the thought of never being a chiropractor again. I love it more than I can say.

[Sangye]

I took 2mg pred this morning, since that's the highest dose I felt good at. (Above 2mg I was a mess--very weak, no energy, etc....) I do feel better and was able to vacuum without feeling like I was going to die. I'm going to stay at 2mg for a few days to see if it's enough. If not, I'll bump up 0.25 mg at a time for a maximum of 3mg.

[renidrag]

Couldn't be happier for you Sangye.

[katarzena]

That's amazing Sangye! I find it interesting how sensitive you are on prednisone tho.

[elephant]

Good Sangye, glad you can vacuum. :)

[Hammy8241]

Very positive news Sangye. It give you a viable target to aim for in the medium term. Lets hope you get the energy back soon as I’m sure your government would just love to tax your earnings. lol

Would it be an idea to sticky (links to WG resources?) your 2nd post along with other such info as it seems so useful knowledge? Be good to find it with trawling through all the threads.

[Sangye]

That's amazing Sangye! I find it interesting how sensitive you are on prednisone tho.
It's due in large part to the enormous doses I started on. When you also factor in the chronic, extreme stress I've lived with the whole time, it's no surprise. Dr Seo wasn't surprised, either. He said getting off the very low doses is difficult for many people.

I've always been sensitive to drugs, though. I don't know what part that played in this.

[Sangye]

Very positive news Sangye. It give you a viable target to aim for in the medium term. Lets hope you get the energy back soon as I’m sure your government would just love to tax your earnings. lol

Would it be an idea to sticky (links to WG resources?) your 2nd post along with other such info as it seems so useful knowledge? Be good to find it with trawling through all the threads.
I think it's a good idea, but I don't have the Power to Sticky. :D

[Sangye]

The more I reflect on this pred thing, the more I understand the past few years. After the initial massive pred, I was off if for 2.5 years. That whole time I was in horrible shape adrenal-wise (and everything else!). My acupuncturists always said my adrenal pulse was absent--something only seen in a dead person. I knew my adrenals had been damaged by the pred but had no idea what to do about it. None of my docs would listen. They rolled their eyes when I told them about the acupuncture findings. When I had acute stress my face would swell, I couldn't regulate my body temp, I'd get really shaky, abruptly depressed, tearful, and have diarrhea. These are classic signs of adrenal crisis and no one would listen. Even Dr Seo said "No way, you'd be dead."

Well, it's exactly the way I felt when the pred dose dropped dangerously low a few weeks ago. As hurtful as it is to have been ignored, it really just shows the limits of medical knowledge. In holistic medicine we know that health is a spectrum where one end is "Ideal" and the other end is "Dead." Most people walk around with weakened adrenals but not nearly weak enough to die from it. For those 2.5 yrs mine were barely functioning enough to keep me alive. I now know it for sure.

[Jack]

Sounds like a plausible theory Sangye. Are there any blood tests that could be used to diagnose if this is happening? I am guessing that levels would fluctuate so much that test results may not make any sense.

[Hammy8241]

Sangye. Copy/pasted your second post into the
http://www.wegeners-granulomatosis.com/forum/images/misc/navbit-home.png (http://www.wegeners-granulomatosis.com/forum/)>Forum (http://www.wegeners-granulomatosis.com/forum/)>Wegener's Talk (http://www.wegeners-granulomatosis.com/forum/wegeners-talk/)>General WG Chat (http://www.wegeners-granulomatosis.com/forum/general-wg-chat/)>Links to Wegener's Granulomatosis Resources
Section of the forum. Hope you approve of this.

[Deanne Hull]

That is wonderful news, and you can look forward to a better future doing what you do best....

[sharon]

Yay!!!! thumbs up, 5 stars, maybe even some light at the end of the tunnel.
I am sending lots of hugs your way. What great news that you are making some headway. Every step forward is a reason to celebrate. I needed some good news tonight, my house is unusally quiet, had a bit of a tough day today, i was having lunch today and my front tooth crumbled into my food, i just sat there and cried, (dentist had pity on me and i get it fixed in the morning), my chest has been playing up again since i had the flu shot, nearly 8wks ago, not sleeping well, fatigue & my sister is going away for 6mths & i am over it, and my tooth was the proverbial straw that broke the camels back. Your small victory, in a funny way, we all share in,
Thanks for the info explains a lot about how my body reacted to the low doses of pred. Thanks once again, you are an angel in disguise. :)

[LisaMarie]

Sangye,
Glad tp here there is some light at the end of this dark tunnel i seem to be in....Does Dr Seo include trach stenosis as part of the sinus group...I can only find poor prognosis with WG and tracheal stenosis??/ Can you offer any information in that area...I am still trying to get approved for Rituxen.....I hope your adrenals kick in soon...it can very fustrating when you know your body and no one will listen ...Thanks for the info on prednisone....I hate it but have no choice but to take it for now...and the methotrexate makes me sick for 4-5 days then I am ok for 2 til I have to take it again...I am hope rituxen will be my way to remission...Have a good day...Thank you for educating us...I am so scared and really have no one to share with..I am so glad I found this forum

[Sangye]

Sounds like a plausible theory Sangye. Are there any blood tests that could be used to diagnose if this is happening? I am guessing that levels would fluctuate so much that test results may not make any sense.
Yes, there are blood tests that measure adrenal function (AM cortisol) but I can't do them. They require you to be off all pred for 2-3 days. I saw a JHU endocrinologist last fall once I was on 5mg pred. I was doing so poorly on it and felt it was destroying what was left of my adrenal function. Unfortunately, my lungs were still hemorrhaging and there was no way I could stop the pred for a few days to do the blood work. He was polite about it but insisted my adrenals were fine.

In 2007 after being off pred a couple months, I was hospitalized for mtx-induced pneumonitis. One of the docs ran an AM cortisol that showed "undetectable" levels of cortisone (ie, insufficient adrenal function). Despite sharing that with all my docs since, none of my docs believed it could be possible that I was still alive and had no detectable adrenal function. I asked for a repeat test during many hospitalizations, but it never got done. :(

After your adrenals have been severely damaged by pred, there is a pred dose that supplies what your adrenals cannot. Above that, the pred depletes your adrenals and you feel awful. Below that, your adrenals don't have enough to function and you feel awful. The MDs acknowledge the "too low" part, but they don't understand that too much depletes the integrity of the adrenals. They just see the side effects, but not the deep levels of damage.

[Sangye]

Your small victory, in a funny way, we all share in,

Reading other people's good news on here does the same for me. We're all sort of out to sea with Wegs, and each time someone gets good news it's like seeing a rescue ship in the distance.

I'm so sorry for what you're going through. Hang onto whatever ray of hope you can grab on. It always helps to remind myself that everything changes, and that a large part of the depression is due to pred's effects on the endocrine system. Too much or too little pred and you can't stop crying. Yesterday was the first day back on 2mg pred and I didn't cry or feel hopeless all day. Just the day before I was completely despondent.

[Sangye]

Sangye,
Glad tp here there is some light at the end of this dark tunnel i seem to be in....Does Dr Seo include trach stenosis as part of the sinus group...I can only find poor prognosis with WG and tracheal stenosis??/ Can you offer any information in that area...I am still trying to get approved for Rituxen.....I hope your adrenals kick in soon...it can very fustrating when you know your body and no one will listen ...Thanks for the info on prednisone....I hate it but have no choice but to take it for now...and the methotrexate makes me sick for 4-5 days then I am ok for 2 til I have to take it again...I am hope rituxen will be my way to remission...Have a good day...Thank you for educating us...I am so scared and really have no one to share with..I am so glad I found this forum
Unfortunately I have no idea about tracheal stenosis. Jan's your gal on that one. She's done incredible research and has picked Dr Lebovic's brain to bits. :D

I know that Dr Seo would not include TS with sinus issues, though. Sinus is very common and TS is not, and they seem to function very differently.

It saddens me to hear how scared you are. Please post your questions, comments, fears and whatever else so we can help you. You don't have to go through this alone. I also recommend seeing a therapist. Mine have sure helped me cope with the constant fear and uncertainty and everything else in the fallout of Wegs.

[JanW]

In Dr. Lebovics ENT group, he would treat subglottic (right below the true vocal chords) but not tracheal (this for him would be third ring or below-- he will do the top two rings, like he did for me) stenosis. For that he goes in with a thoracic surgeon. He actually used to go in alone but he said that having the chest guy there yields a better result (and my sense is that it's trickier to do as well so the two surgeons are a benefit). LisaMarie -- do you truly have no subglottic involvement at all? That would make you somewhat unusual for a wegs patient I think, and I'm not sure if the treatment for TS is slightly different than SS -- for one thing it seems like they would have a smaller space to work in -- your subglottic is completely exposed once they reach your vocal chords -- I'm not sure that they can see your entire trachea without a bronchoscope and putting you under (I think that's right). I also thought the tracheal piece was more common in relasping polychrondritis (has that been ruled out in your case) as well as sarc (which is easier to diagnosis than WG, as I understand it).

I guess that the important piece to understand, as it was explained to me, is that medications will not fix, or have an impact on stenosis. It really needs a surgical intervention. Frankly, of the people I've seen on this board, their inventions have been all over the map, based on surgeon, location, methods, etc. I only know what Lebovics does, and have been very satisfied thus far with the result. There is no sense that I will need 15 or 20 of these procedures over my lifetime (as some have had). I am seeing him today but believe that I am still fully open -- it doesn't feel different at all. And I remember the feeling from when I first started having shortness of breath in 2005.

[Sangye]

Good luck today, Jan. I hope he says your trachea is still looking great. :)

[JanW]

My subglottis, Sangye. Try to keep up ;-)!

[Sangye]

So funny, especially after you made a big point about the difference. ROTFL :D

[Jack]

It saddens me to hear how scared you are. Please post your questions, comments, fears and whatever else so we can help you. You don't have to go through this alone. I also recommend seeing a therapist. Mine have sure helped me cope with the constant fear and uncertainty and everything else in the fallout of Wegs.
I agree with Sangye. Although I have not used a therapist myself I do believe that it is very important to get your head straight (that is not supposed to sound like an insult! ;) ) in order to cope well with this illness. I think that we are often guilty of concentrating on our drug therapies and neglect the affect that state-of-mind has. You need to do whatever it takes in order to come to terms with your condition whether that means unloading to us on here, increasing your knowledge of your condition or talking it through with a therapist. Maybe you even need some more pills, but that is OK in the short term too.

[Kimbangu]

I have come back and read this original post about 8 times in the last 2 days. There is some very valuable information , it's like gold dust and I just wanted to say thanks for sharing it Sangye

[Sangye]

Aww, you're welcome Kimbangu. I have to give Dr Seo a lot of credit for spending a ridiculous amount of time with me on Wednesday. The adrenal insufficiency made it very difficult for me to articulate my questions and to follow his lightning-fast mind. He had to keep repeating himself. He took a lot of time just explaining my own stuff and was so generous with his time to answer all my questions about Wegs in general.

He also has the same sense of humor as me and laughed when I complained about losing the last 4 years to Wegs. He said, "Come on, now. To a Buddhist 4 years is nothing. You have countless lives!" It got me laughing, and that alone was a gift.

[me2]

How does one figure out how much pred is too much and how much is too little. I am more familiar with what too little feels like or what it feels like to reduce pred. Any tips would be appreciated. I'm guessing that my adrenals are shot from long term use of pred. I am always on my own as far as deciding to increase or reduce.
If I had to guess what my sweet spot for pred is I would say 10 mg. I seem to encounter trouble every time I try and get below that .
Right now I just reduced from 15 (been at that level a couple of months) to 14. Already feeling crappy. Incredible what that it can cause such misery at such low doses and here we take something like 50 mg when in trouble.

[Jack]

Me2 - are you under the care of a Wegs specialist? Any change to your Pred dose should only be made in consultation with someone who has all your results available, it is far to dangerous to go making changes without monitoring. The only exception I would make is if you have long experience with the drug and are well tuned in to how your body is reacting, I would not want you to kill yourself and this can happen!

I too can't get below 10 mg of Pred without Wegener like symptoms reoccurring and if I drop my dose too quickly I get a more general unwell feeling. When I increase to high doses, I tend to get very stiff joints which seems odd because you would think it would do the opposite.

[Sangye]

Me2, I agree with Jack. We couldn't possibly tell you what dose is best for you. I don't remember where you're at-- do you have access to a Wegs doc? A good endocrinologist might be able to help, too. Dr Seo emphasized that a failed taper means having to stay at the higher level for 6 months. If you're trying to taper sooner than that, it might be where you're getting stuck.

There seem to be 2 levels of difficulty when tapering pred-- getting stuck around 10mg or getting stuck at 5mg or below. And there are 2 types of difficulties we run into-- insufficient adrenal function or triggering Wegs. I only had the adrenal insufficiency, but I do think if that continued the Wegs would inevitably flare, too.

When Dr Seo said he wasn't surprised I was having a hard time getting off pred, I was totally shocked. I was on the huge doses for 7-8 months, off for 2.5 years and back on 4mg for almost a year. I didn't think that was a major pred history! But he said it is, and you have to taper extremely slowly because of it. He also said I might have to accept having to stay on approximately 1mg (when I can get back down to it). So those of you who've had more pred than me have a major major pred history. No wonder you struggle to taper it at all.

[JanW]

I was coming to say exactly what Jack said. I think that even if you are a long-term patient (sorry, can't remember right now) you should be taking the doctor's advice (while listening to your own body of course) about how/when to alter your dosages.

[Lightwarrior]

Me2, I agree with Jack, Sangye and JanW. Especially when you have been on the doses that we take it is life threatening to taper pred too quickly. I started taking 15mg for the first time yesterday and as anxious as I am to get lower I follow exactly what my Docs tell me to do. This forum has excellent information to help verify that I am getting right advice from my rheumy, who is not a wegs specialist despite his own opinion of himself,

[Palmyra]

Thanks for the info Sangye,
My heart goes out to you for the yen/yang of the good news/bad news scenerio. I have learned to ready and brace myself for something unexpected when we visit with one of the 'special' specialists, as unexpected news is always received. It is that part of the 'unknown' with disease, that brings the emotions into play.

Thank you for tranferral of Dr Seo's valuable information. Please continue to share more jems of information, as you are able.

Palmyra (Jane, mom of Alison)

[me2]

Thanks for the thoughtful responses. I am a long term patient. My doc is a Rheumatologist at a teaching hospital here in Washington state. Like your doc Lightwarrior I don't think he is a Wg specialist but I don't think I can do better. I had a doctor at a Wg symposium tell me that research for diseases is clustered around certain areas of the country. For example, he said that the top heart disease work was being done in Seattle (where I go for treatment). For that reason you tend to find the top heart doctors in that area. He said I lived in a great place to have a heart attack.
He said that virtually all vasculitus research was being done East of the Rocky Mountains. Then he looked at me and said "You live on the wrong coast." He meant it jokingly and we had a good laugh , but I got the point. None of the Wg consultants lives on the West coast and there is zero chance of me having me one to treat my condition. I know that my doc can call them for advice but do you realize how many calls that would be? ha , seriously - lots of calls.

It seems that there are areas of Wg treatment where you can find different opinions even among specialists. Tapering prednisone appears to be one of them. Jack you caution me (thank you) against changing my dose without monitoring but I'm not sure what you mean by 'monitoring'. Perhaps you mean not changing things without consulting my doc, which is a good idea, but I don't know of any tests to monitor pred reduction other than things that would show remission.

Here is where I am out of luck again. In my case I can get extremely ill without a change in my blood work. I know there are others in the same boat. So, unfortunatly my doc has to rely on me telling him how bad off I am to guide treatment. I am very in touch with what my body is doing . I was at one time highly conditioned through kung fu practice and mountain climbing and yoga . I know my body. (even though I can't do those things any more)
One thing I have learned through many , many episodes of illness is to trust above ALL what my body is telling me. This means that at times I will be at odds with the doc. Not something I enjoy. Not a position that I was good at or experienced in . I have suffered terribly for not being skilled at doctor-patient relations.
But I digress from the pred discussion. I guess I am assuming that in all cases of pred taper we think that we have a situation of remission and can start pulling out the pred crutch to see if we can stand on our own (either with other drugs propping us up or without).
I was on 50 mg since October of last year until about March of this year. A LONG time to be at high dose. Even at that dose I was still having Wg symptoms and struggleing to find something that would work. Rituxan used to work but this time I took it and couldn't even tell. Very dissappointing. So , I am now doing IV Cytoxan every two weeks and it is helping a lot. So, time to work on pred reduction. I was able to go from 50 down to 40 , then 40 down to 30, then 30 down to 20. Then 20 down to 15. And two days ago I reduced down to 14 and I can feel it.

Like Sangye says there are two difficulties -Wg or pred reduction. It is many times difficult to tell which is which. Pred aches and pains settle into the very areas that my WG has damaged. Throat , sinus , CNS, joints , etc. I cannot up the pred dose just because I feel bad or I will never get off the stuff (when I say 'off' , I mean getting at least down to 10 mg or less) When I get to 10 mg I plan on taking a long break.
I agree with Sangye that if I push too hard for too long against adrenal insufficiency I take a chance of starting up the WG again.
Sangye you said that Dr Seo said that a failed taper means staying at the higher dose for six months. I have never heard of that.
Surely you are referring to the low doses you are taking and not something above 10 mg? I am trying to come up with a clear protocol . I thank you all for sharing you knowlege and experience with me. Wouldn't it be great if one of the Wg specialists wrote a definative article on "Prednisone reduction for Wg patients"?
An article that covered all the fine points we are discussing and maybe more. Does such an article already exist?
JanW I want reinforce something you have said. Take the docs advice - but listen to your own body. I have let the doc talk me out of what my body says and gotten very ill for lack of treatment. This illness requires quick and aggressive treatment.
I recently had a terrible episode of acid reflux. If you have never had it let me tell you it can be extremely painfull. I pressed my primary doc to help me . He told me I needed to "work on my anxiety". He referred me to a Gastro doc. Great. Gastro says they can see me in about a month. "I'm sorry but I am in extreme pain and would like to see someone sooner"
Well, "We are sorry but your doc would have to REQUEST that you be seen sooner." Me, "I think he did" . Gastro- "No he didn't"

I check back with him, he won't talk to me but has his nurse leave a message on my machine "You have to co-ordinate with Gastro". He is basically refusing to help me.

My esophagus is on fire. I am getting the run around from a doc I have seen for 30 years. I then did something I have never done. I called up the medical directors office for this major university hospital and I told him what was going on. He told me he would look into it. I expected more run around and instead I got a call next day from Gastro saying they could see me in two days would that be all right? HELL YES that would be alright. I didn't expect to get seen THAT soon but I wanted something sooner than a month.
Next time I talk to my doc he says "You called the medical director. (it seemed he was sort of fishing for an appology or something)".
I just said "Yes, Yes I called the medical director" End of discussion.

My point is, even with a good doc things can fall apart and I have learned to be my own unshakeable advocate. As my doc says (the one that blew me off) "Nobody cares about what happens to you as much as you do". He meant that in a good way , in a way to encourage me to listen to my body and myself (it came back to haunt him a few years later . ha) .
Sorry for rambleing.

[Jack]

A great post there Me2, now I know where you are coming from and can tick the "expert" box. ;)

Your background sounds very much like my own, even down to the yoga and karate, but I am lucky enough to be treated at one of the major vasculitis centers and the docs know that how I feel is more important than blood test results. I have just spent some time at another hospital and had a running battle with the docs there over my weird results with me refusing the treatment offered. They eventually contacted my vasculitis specialists and I heard no more about it. :)

I think your main problem is that you are in a rush to get off as many drugs as possible. Something we all aim at. However, if you are still on Cytoxan, you are far from being in a state of remission and 15mg of Pred is not that bad for the time being. I would be more concerned about getting well and getting off the Cytoxan. It is not a long term treatment option due to its potential side effects. Once you are feeling better and have switched to something a little less toxic, you can try lowering the Pred dose again. In my case, I can't get below 10mg after 25 years of treatment, but Sangye is a special case and is super sensitive to Pred. Any dose that she takes can be multiplied by 10 for most patients.

Are you taking something to protect your stomach? You need something like Lansoprazole or you will wreck your gut. My own system is in a terrible state after all these years of pill taking. You should also be taking Calcium as a minimum to protect your bones against the effects of Pred.

Glad the Cytoxan seems to be working for you. It did for me too, but now I've had my lifetime "safe" dose and can't take it any more should I have another flare.

All the Best!
Jack.

[Sangye]

Me2, wow that was a great post. You sound a lot like me. Until this mess, I did yoga daily for about 12 years. It really changes your body awareness. I've also had a really hard time communicating with my docs for the same reasons as you. I have very good body awareness and sense trouble long before anything objective shows up. My blood work looks great until I'm in the ICU. And being ignored, dismissed, doubted or ridiculed really gets me angry.

We often talk about the role of therapy to help us cope with Wegs, but a huge benefit I've derived from it has been learning how to work with my docs better. It's made a world of difference for me. Curiously, the better I've gotten at it, the more docs I have that are easy to work with. It's undeniable. My first docs were the worst and shouted at me, hung up on me, etc.... I got a bit better at communicating and my next docs were easier to work with. Then I got really good at it and wound up with my kind JHU, PCP and dermy docs. I highly recommend therapy to learn these skills. I couldn't have done it on my own, especially with the stress and anxiety of Wegs.

I agree with Jack that it's probably not good to taper the pred while you're still needing ctx.

I still encourage you to have your doc consult with a VF doc. They can handle the phone calls--that's what they do. Let them decide if it's too much! My sense is that they could clear up the general issue about the best course of treatment (ie, which immunosuppressant and for how long, when to taper pred) fairly quickly, while most of the other collateral issues could be handled by your local docs.

[JanW]

Wow, me2, you have certainly been through the ringer! Yes, it's true, all of the vasculitis research in the US is being done more or less on this side of the continent.

I think the main thing for any kind of vasculitis patient (or any patient of a rare disease) is knowledge. Knowledge about oneself (even when we are in denial and don't want to believe that we are having a WG symptom), knowledge about the drugs you take (and their interactions) and knowledge about what the standard protocol is (pred/immunosuppressant as Jack and others always say). If your doc won't put you on that kind of protocol, why not? (I'm not, but understand why not, and in my particular case it is working for me, so far). There are people that I know here on these forums that have the relatively rare little wrinkle that I have (subglottic stenosis) that receive treatment that is far from standard, and may not be effective. A good doc shouldn't be alarmed if you ask about studies on any of this stuff (because they have been done) or to tell you WHY he/she is going off the protocol. It should make some sense and NOT be mumbo-jumbo. I'm lucky that I've got a doctor who is an active researcher in this area (as are probably all of the docs on the VF website), but it's not that hard for a GOOD doctor to go to pubmed or some other sources to find studies (and believe me, that's what they should be doing to stay current in their field, particularly if you are going to someone who never sees/rarely sees vasculitis). It's not the same as treating real people, but at least they are trying instead of being lazy and acting like it's a bad case of RA.

My doctors have never pooh-poohed by "I'm feeling great!s" after taking a look at blood resullts---and they shouldn't. My blood results have been going in the right direction, but someone could still look at my P3s, for instance, and say, WHOA, they are 50+, she's really sick -- and I'd bet that some people much sicker than me on these forums have much lower numbers.

It's an extremely humbling disease, and this is what my docs say. If you met my rheumy and my ENT they are lovely guys but you would certainly consider them pessimistic -- simply in terms of saying things like "you shouldn't expect to ever be medication free" or, as my ENT said yesterday, "you are doing much, much better than I expected so far -- but that could change at any moment." No one's saying, "you're a healthy young woman -- you're going to beat this thing." They say, "live your life, raise your children, but know that at any time your 'luck' could change." I admire this approach and know that when I am dealing with them I am dealing with people who have had patients die from this disease. No concern is too small to bring to them, the chart is always complete, the letter from the specialist is dictated and mailed to the rheumy the next day, the rheumy calls me with blood results the next day. Am I pushed ahead of their routine RA patients and their sinusitis patients? Hells yes, and I deserve to be. Treating this disease like its symptoms can wait for treatment is likely almost always a mistake.

[Sangye]

Sangye you said that Dr Seo said that a failed taper means staying at the higher dose for six months. I have never heard of that.
Surely you are referring to the low doses you are taking and not something above 10 mg? I am trying to come up with a clear protocol . I thank you all for sharing you knowlege and experience with me.
My understanding is that if you taper the pred too fast and get adrenal insufficiency symptoms, you've stressed the adrenals so much that you need to increase it to the dose where you began the main taper for 6 months. I don't know if that means back to 50mg for you, or 20mg or even just 15mg. Since you tapered to 14mg two days ago, you're right in that window Dr Seo told me about. If you truly were doing fine at 15mg, then increasing it back to that might be enough. I got into trouble when I went below 1mg. If I'd raised it back to 1mg within a day or two I would have been okay.

Do you keep a daily log of signs/symptoms as you taper? I am SO glad I did that--especially with AM/PM notes. I wouldn't have a clue about how I was doing at each dose.

Dr Seo drilled into my head that I was just too anxious to get off the pred and I ignored what my body was doing. He had to say it over and over for me to accept. You have to know his sense of humor and the hilarious tone he used when he said, "Your hubris made you think you could go faster than you can, and the penance for it is 6 months at a higher dose." To my endless string of "But... but..." he said "Hubris. You're guilty." It was hard to hear it at the time because I was SO adrenal insufficient I was utterly despondent, but it makes me laugh right now at how true it is.

[me2]

Thank you so much to everyone , Jack , JanW, Sangye for this discussion. I am going to come back to this topic but TODAY I feel good enough to go out and get some things done. THAT doesn't happen too often so I must make the most of feeling physically good. You have all made me think, made me laugh , and made me cry. Thank you. I wish you all the best - Carpe Diem!!! Right? (That means go Carp fishing right?)

[Sangye]

I'm so glad you're feeling good today. Get out and enjoy yourself! :)

[Jack]

Yes, have a good day, but (and there always has to be a "but" on this forum or we don't think we're doing our job ;) ) don't over do it. :)

[Sangye]

Today was my 3rd day back up to 2mg pred. I felt a lot better, but this afternoon I noticed that while my body felt okay my head felt sleepy. Not an overwhelming feeling, but enough to get my attention. Since feeling sleepy was an indicator of insufficient pred before, I took another 0.25mg around 4:00. Wow. What a difference. It's literally like the lights came on. My head is clear, I'm awake and my body feels good. I don't feel hopped up-- just right.

So maybe that's my magic dose. :)

[LisaMarie]

jan i must have mis spoke my stenosis is just below my subglot....he called it subglot trach stenosis so i am not sure if subglot was not effected...when i got sick 2 1/2 months post surgical repair and could not shake it ...i returned go the otolargynologist/ent to be scoped because of increased stridor and breathing problems did he see the WG raging....

[JanW]

Sounds like it probably your subglottis and trachea that is affected then. Not at all uncommon in WG.

[Doug]

This is the best all around thread I've read in a long time. me2, Sangye, jan, Jack- I hope I haven't missed anyone!- this whole dialogue shows how important the right doctor can be (Sangye), how the weggie sometimes has to rough up the doctors a bit to get not your way so much as the trreatment your body tells you you need now (me-2), how working carefully with doctors you can trust and who have the right skills can make your life more comfortable and healthy. Everyone before this note should feel very good about the valuable commentary contained in the thread. Bravo to you all!

[Sangye]

Thanks, Doug. :)

I'm still remembering thing Dr Seo told me on Wednesday.... I asked about the long-term risks of staying on the very small doses of pred (ie, under 4mg). He said it isn't a problem to do it for 10 years, but after that they just don't have enough data.

I know Jan developed osteoporosis from the relatively small doses of pred used when they thought she had asthma. I found this quote on the NIAMS website (http://www.niams.nih.gov/Health_Info/Bone/Osteoporosis/Conditions_Behaviors/asthma.asp) regarding the risk of osteoporosis with asthma: "Doses of more than 7.5 mg (milligrams) each day can cause significant bone loss, particularly during the first year of use."

I did great today on 2.25mg, so I think that might be my perfect dose.

[JanW]

That is correct Sangye. And (unfortunately for all you higher-dose longer-term pred users), this was by no means continual use. I was probably on oral pred eight or nine times in five years, highest dosage per day would have been the high dose in the medrol pack (can't remember exactly what that is, but it's certainly the standard thing they give anyone who is slightly inflammmatory) or 4 mg a day, whichever is higher. Also would have had inhaled steroids and steroidal nose spray, both of which are standard asthma/allergy treatments. The last time I was on the 4 mg/day was around March 2009 -- I was diagnosed with serious osteoperosis of the spine and osteopenia of the hip in February 2010. Keep in mind that I am also African-American and premenopausal, no existing risk factors except for pred.

I should also add that obviously I am just treating this with Fosamax and going about living my life but I was truly SHOCKED that my bones could have weakened so quickly. I was aware of the dangers, but this is one case where a drug's major side effects were much worse than I had been ld to believe.

[Sangye]

Jan, the Medrol packs contain much more prednisone than 4mg/ day. Each pill in a Medrol pack is 4mg prednisolone (equiv 5mg prednisone). The first day you take 6 pills (30mg pred), and decrease by one pill each day. So day 2 = 25mg pred, day 3 = 20mg, day 4 = 15mg, day 5 = 10mg and day 6 = 5mg. In 6 days you've had 105mg pred. It's not long enough to cause adrenal suppression, but it is long enough for the body to notice and for hormones to be disrupted. (Particularly if you have other sources of steroids and occasionally repeat the Medrol pack) The hormone disruption persists and is probably a huge contributor to your bone loss.

Last May when I had severe cellulitis, Dr Seo put me on a Medrol pack to see if it would help. I couldn't even get the first day's dose in because of the pred side effects. I was only able to take 4 pills (equiv 20mg) for one day and it took many days for me to feel okay again.

I agree that most MDs do not believe how dangerous pred is. The Wegs docs get it, thankfully.

[JanW]

My rheumy always uses the example that the development of steroids by the folks at Mayo changed the course of history (to the extent that they changed John Kennedy's health profile and he became president), however, no one talks about how people become literally debilitated by long term high dose pred use. He says that everyone say the 'before' pictures (disease like RA meant a life of unremitting pain before the development of these drugs) but they never show you the after pictures.

It's funny, because even when I asked my surgeon if he was sending me home on pred after my dilation to guard against inflammation he was all like "OH NO, nothing like that." Like I was asking for oxycontin or something. Both my docs are very 'nervous' about pred.

[Sangye]

The Wegs docs always have one eye on the long road for us. I didn't really notice or appreciate that for quite awhile with Dr Seo, because I was so focused on surviving the present. But during every conversation, he mentions the short-term and long-term implications of the drugs and procedures we use. That's a major difference between non-Wegs docs and Wegs docs. The non-Wegs docs focus only on keeping you alive right now. (Mine sure did-- the enormous radiation I've received from 30+ CT scans and 50+ x-rays in 4 years show that they were only expecting me to live a few years) He always refers to me (age 47) as "still young" when deciding which drugs to use.

The Wegs docs see long lives for most of us. They might not be lives free of all drugs or health problems, but they are long nonetheless. Yet another reason to have a Wegs doc, and another reason to take heart.

[Sangye]

Today is my 5th day back up at 2.25mg pred and I just decided to bump it up to 2.5mg. I've been getting sleepy around the same time each afternoon despite taking the 0.25mg at midday. It perks me up, but I've noticed an unusual lack of initiation each day. I think 2.25mg gives me just enough energy to putter around the basement, but not enough to feel energized to go do errands, etc....

That's not like me. I usually spend a day or two at home after a long day out, but this is my 3rd day and I'm still procrastinating about getting out.

When I was tapering, I felt the best at 2.25mg.

[Brooke]

I hope you get to feeling better soon Sangye. Did you let your doctor know that you bumped it back up?

[Sangye]

Thanks, Brooke. I'm actually not feeling bad, just feel like the pred dose is a little off. Dr Seo wanted me to increase it back up (see beginning of this thread). His guess was that 3mg would be where I'd feel good. I felt truly awful at that dose before-- it was too high--so he said I could inch my way up to it, finding a dose that was neither too high nor too low for comfort.

I felt the extra 0.25mg kick in just 30 minutes after I took it. Now it feels like too much pred! I'll see how today goes, and email him tomorrow if I can't figure out what to do.

[Jack]

Try not to become too obsessive about hitting just the right dose Sangye, you might have to just ride it out for a few days while your body settles down. Perhaps near enough will have to be good enough?

Let's face it, feeling a bit crap is normal for most of us. ;)

Hope you feel a bit better soon and can start making that progress again.

[Brooke]

Yes I hope you can find the right dose without being too miserable. You will get there!

[Sangye]

Well. The 2.5mg is definitely too much. Within an hour of posting that last comment, my eyes became swollen, hard and are bulging-- my telltale sign of too much pred. I also have a headache, tight neck, and I feel like my head is floating. I'm irritable, too. Man, I just didn't expect it from adding a mere 0.25mg. Tomorrow I go back to 2.25mg and will just stay there for a few more days and see what happens. It may just be a matter of splitting the dose better between morning and afternoon.

Jack, the reason why I'm concerned about being on too low a dose is that would mean I'm still in adrenal insufficiency. Hanging out too long at an insufficient dose is what caused this mess.

[elephant]

Splitting it Sangye sound like a good idea, might as well give it a try. Good luck.

[Jack]

Jack, the reason why I'm concerned about being on too low a dose is that would mean I'm still in adrenal insufficiency. Hanging out too long at an insufficient dose is what caused this mess.
Yes, I fully appreciate the problem and don't have any easy answeres. Truth be told, I always have my own Pred balance worrying away at the back of my mind. ;)

[Brooke]

Sangye - I too started to split my pred doses. I take 5mg in the morning and 5mg before bed. I have been doing this for about 3 days, so far I guess I haven't really noticed a difference.

[Sangye]

So after an unpleasant night, I'm back to 2.25mg pred today. I'm splitting it 1.25mg morning and 1.0mg midday.

In the middle of the night, I formulated a better answer to why I'm being so (admittedly) obsessive about the dose. For the 7-8 months I was on high-dose pred, my life was a nightmare. For the 2.5 yrs that I lived off pred, my quality of life was truly awful. I had no physical fortitude and couldn't build up at all. I was totally stuck. I was also seriously depressed much of the time. Likewise, for the year that I've been back on pred, my quality of life has continued to be awful-- still no physical fortitude, no way to build up, depressed, hopeless. But the 2 weeks I had at the perfect dose were like nothing I'd experienced in 4 years. My body felt stronger (and capable of being strengthened), my mind was clear and I felt hopeful again.

Finding the right dose means not living in either of those awful places-- a possibility I didn't even know existed before. I've come to accept a lot of dysfunction in my body, but I learned this one can be corrected. I might make myself a little nuts finding that right dose, but hey. :D

[Sangye]

Sangye - I too started to split my pred doses. I take 5mg in the morning and 5mg before bed. I have been doing this for about 3 days, so far I guess I haven't really noticed a difference.

That's great, Brooke. Did you see the thread about ways to taper pred? The two links I added had interesting ways to taper when you split the dose.

[Brooke]

I did, thanks for the links. I didn't read all of it, just skimmed through. I will have to read the whole article when I get a chance, good info.

[jola57]

Sangye, no easy answers here, you know what to do, listen to your body and keep trying to get to that happy place where pred and body agree. As much as you want to be off the pred clearly your body thinks otherwise. Too much bad, too little bad, so I hope you find your happy medium soon. Will think of you when visualizing feet in water/sand on beach. Thinking of you happy thoughts.

[Brooke]

I was supposed to start my 5 mg steroids this Monday, I started on Sunday instead. I can't do 5 mg, I was starting to cough at 10 mg. My doc here wants me to do 15mg one day and 10mg the next day for a month then do 10mg for a month then 5mg for a month. I don't want to go back up that high. I was hoping I could do 5 in the morning and then 2 1/2 at night and maybe 10 mg the next day. I put a call in to the Mayo doc to see what she says. Yesterday I did 5mg in the morning and 2/12 at night, I slept better but still had a cough attack. I am feeling better today than yesterday morning too. I wonder why my coughing is at night so much? Grrrrrrrrr

[elephant]

It is probably post nasal drip. Sleep a little upright and see if that works. Are you doing the sinus rinse? I do the sinus rinse a hour before bedtime.

[Brooke]

Thanks elephant, I will try to sleep upright and see how that goes. Yes, I do a neil med sinus rinse every morning and after work around 6 pm. Does that mean steroids help with post nasal drip? I didn't cough like that until I started lowering the steroids to 10 mg.

[jola57]

Brook be very careful, when I lowered fro 10 to 5.25 too quickly I sarted coughing then spitting up blood and ended up back on cyclo and 60 pred for a year. A much as you want to get off the pred believe me it is not worth it when you flare and you are right back where you started from or even worse. This time around I did from 10 mg on, by 1mg lower per month or more and now I am at 5 and feeling good. Good luck.

[elephant]

Brooke, I agree with Jolanta....I would ask to have your prednisone lowered very slow. My WG specialist at the Cleveland Clinic stated that people who have sinus ( resp involvement) have a really hard time getting to 5 mg of prednisone. I already had to bump my prednisone more than four times...the last time I had to bump it to 10 mg.
Brooke I remember you were doing well no coughing, at what point did you notice the coughing...how much prednisone where you taking?

[Brooke]

I will keep that in mind, I don't want to go back to 20mg everyday. I had always been at 20mg and then lowered to 15mg and did pretty good, it was when I was lowered to 10mg that I noticed the coughing at night. Maybe 12-14mg would work for me for a while.

[elephant]

When you start to taper 15 mg to 10 you usually go 12 1/2 milligrams first for two weeks or more...then go to ten. See if that 12-14 mg of prednisone margin would work and talk with your doctor about it.