Alternative Therapies

[Sheena]

Hi Everyone,

So I have had Wegeners for 3 years now. I am on Imuran, Pred, Bactrum, and coversyl. I constantly feel tired and struggle for energy. I am just wondering if anyone has tried any alternative therapies to compliment the meds that I am already on. I have been looking into accupuncture and wondering if anyone has used this or anything different?

:smile1:

[elephant]

Sheena what is coversyl? Did you have lung, kidney or heart damage from Wegeners? How much of Imuran, pred and bactrim are you taking?

[Sheena]

Coversyl is for high blood pressure, I am on 150mg of Imuran, 5mg of pred and I take bactrum two tablets twice a week! It was my lungs for me! Thankfullyy kidneys are so far unaffected! at my sickest I was on oxygyn 24/7, my heart rate was through the roof and I couldn't control my body temperature! I had to have a blood transfusion (thank goodness for people that donate blood I am such a big advocate for that having been a recipient!) 3 years on it is still hard to believe that it all happened! My boyfriend said something very profound to me the other day and that is that I need to forgive my body, I think he is onto something there!

[Sangye]

I've posted often about how to use holistic treatments and the limitations. Here are some threads with that info:

http://www.wegeners-granulomatosis.com/forum/general-wg-chat/353-natural-homeopathic-remedies.html
[/URL]
http://www.wegeners-granulomatosis.com/forum/general-wg-chat/157-alternative-non-medicinal-treatment.html (http://www.wegeners-granulomatosis.com/forum/157-alternative-non-medicinal-treatment.html)

I started this last thread to explain how Ayurveda can help us, especially with pred side effects. It makes a huge difference for me. I definitely have more Wegs symptoms when I don't follow a Pitta (Fire) pacifying diet and lifestyle.

[URL]http://www.wegeners-granulomatosis.com/forum/medication/943-how-beat-some-preds-side-effects.html

[elephant]

How often do you see your Wegeners specialist? Just keep an eye our for other symptoms that go along with being tired ( out of energy).

[Elena]

I've tried accupuncture, but that was for my sinusproblems, not for fatigue.. I was in a lot of pain for about 3-4 months and the docs tried a lot of different antibiotics but nothing was helping, so I tried accupuncture which started helping after just 2 sessions :biggrin1: and after a few more sessions I didn't feel any more pain. So now I'm a big believer in accupuncture!

[chrisTIn@]

...after a few more sessions I didn't feel any more pain. So now I'm a big believer in accupuncture!

That sounds interesting Elena!
Does the accupunture also treat the fatigue, or is it for (joint-) pain only?

[Elena]

I don't know as I only went there because of the pain. I never really had any trouble with fatigue.. But it works great for pain in relation to the sinuses, probably other kinds of pain as well. Not sure if it was helping to cure my infection or just taking the pain away though.

[me2]

I wish I could afford accupuncture more. When I was extremely sick months ago it really helped me regain my strength. After many months of not having treatments I am going next week to get accupuncture. In my area I found that not all practitioners create equal results. I drive 100 miles to see the one who I can really tell has a gift. I feel different right after his treatment.
I remind him each time to do the sinus treatment because I can really feel it on my sinuses.

[marta]

I've had wro shr - it's reflexology on steroids - from an amazing practitioner. It stimulates organs into activity and it's been great for me. She's far away, but my mom does it and she's in town, so I get it now while she's here to give me a hand with life while I'm down for the count.

Another thing that has just come up within the last 24 hours that I am curious about seeing if any of you have heard anything of is:

a) plasmapheresis - apparently while I was out of it in hospital when I got diagnosed it was one of the treatment options that the team that diagnosed me were discussing. I of course don't remember any of it, but upon someone with an AI disease mentioning it yesterday, Brian told me about the discussion amongst the specialitst

b) stem cell translplant - anyone heard of that for our 'condition'.

Just curious. Not going to jump at it right this minute, but wondering if there's other options out there that are medical and probably equally agressive to what we're doing with the drugs.

[Sangye]

Use caution with acupuncture, as it can stimulate the immune system. Last year I was in the early stages of a flare. I had acupuncture from someone who didn't respect my cautions and the very next day I wound up hospitalized with hemorrhaging lungs. I had to go back on pred, ctx and then rtx and it set me back a year.

[Doug]

Plasmapheresis | Vasculitis Foundation (http://www.vasculitisfoundation.org/node/486)

I had this treatment, along with dialysis. They gave me dialysis daily for a week; skipped a day; gave me dialysis followed with plasmapheresis; skipped a day; gave me dialysis followed with plasmapheresis. The procedure was almost pleasant (in my experience), though the two days with dialysis and plasmapheresis were very, very long days. The link talks about a different frequency, and doesn't mention dialysis. My particular circumstances (kidney involvement, with some loss of function) doubtless were the reason I had dialysis first. At the time, one of the nephrologists (I think...) told me they could give me more than two treatments with plasmapheresis, but their experience showed there was little additional benfit to the patient. If you do take that option, be sure to ask about this. Why two (which worked for me) when the Vasculitis Foundation information suggests a significantly larger number of treatments as being typical? (It may be that something was learned about it between now and nearly seven years ago when I had it that resulted in a change.)

[marta]

Thanks Doug,
That sounds very interesting. I'd never heard of it until yesterday, and then found out it was something the docs were considering for me. Once I get my sea legs back, I'm going to look into it.

[Jack]

I had four sessions of plasmapherisis when first diagnosed about 25 years ago. I think it was pretty experimental for the treatment of Wegener's in those days, but they wanted to give me every chance.

If you are having sinus problems then you should immediately assume that it is due to Wegener's unless it responds to antibiotics. It seems that most ENT docs would rather think of it as being an infection because this is what they are used to seeing on a daily basis. Treating the pain, but not the cause could be detrimental.

[chrisTIn@]

Use caution with acupuncture, as it can stimulate the immune system..

Thanks for posting this Sangye.
That's my greatest concern at this point.
HOW to deal with all the insecurety, that this disease brings.

Sometimes you don't know what's good for you anymore...
Things that used to be good to do, because it stimulated the immune-system,
are now suddely bad, because of Wegener's...pfff. :confused1::mad1::crying::unsure:

[Sangye]

Marta, at my last visit Dr Seo told me of a study underway this year about using plasmapheresis more extensively to treat Wegs. Up until now they've only used it for severe kidney involvement. I don't qualify for the study, but have always had a gut feeling it would be a good treatment for me. (It's purely a gut feeling--not based on anything scientific. I had the same feeling about cellcept and rtx, and they've both helped me.)

Here's the link to the ongoing study. They're recruiting participants. See if you qualify.
Plasma Exchange and Glucocorticoids for Treatment of Anti-Neutrophil Cytoplasm Antibody (ANCA) - Associated Vasculitis - Full Text View - ClinicalTrials.gov (http://www.clinicaltrials.gov/ct2/show/NCT00987389?term=wegener%27s+granulomatosis&rank=29)

[me2]

I'm glad you guys are talking about this this morning and that Sangye posted the link. I'm going this morning to talk to my doc about treatment options. I may have run out of them. I am on pred and Cytoxan right now and going backwards on symptoms. I think plasma exchange may be the only thing I haven't tried.

[Jack]

Have you tried Rituximab? If Cytoxan does not work, this is the usual alternative.

[drz]

Marta, at my last visit Dr Seo told me of a study underway this year about using plasmapheresis more extensively to treat Wegs. Up until now they've only used it for severe kidney involvement. I don't qualify for the study, but have always had a gut feeling it would be a good treatment for me. (It's purely a gut feeling--not based on anything scientific. I had the same feeling about cellcept and rtx, and they've both helped me.)

Here's the link to the ongoing study. They're recruiting participants. See if you qualify.
Plasma Exchange and Glucocorticoids for Treatment of Anti-Neutrophil Cytoplasm Antibody (ANCA) - Associated Vasculitis - Full Text View - ClinicalTrials.gov (http://www.clinicaltrials.gov/ct2/show/NCT00987389?term=wegener%27s+granulomatosis&rank=29)

I had a dozen or so sessions of plasmpherisis during my inpatient treatment when I was diagnosed this spring. My kidneys were involved, second problem after I lost my hearing, and then bleeding in my lungs. My kidney function got down to 20-25% range but gradually improved with treatment up to mid 40's which permitted me to avoid dialysis. I thought it was standard treatment for Wegener's and once the inserts were in place, there was little discomfort with the process and I often slept through it.

[me2]

Thanks Jack,
Yes , I have tried Rituximab a couple of times and it seemed to loose effectiveness for me. I don't know if it could be considered again since it didn't give me lasting relief last time I used it . I did find out that for some Rituximab is used every 6 months to maintain remission rather than waiting to get sick again. I think I got sick again after about 8 months and it was assumed the Rituxan wasn't working well for me.

[Jack]

Sounds to me like it might be worth another try, but with regular treatments at least for a few years.

[Sangye]

me2, were you on another immunusuppressant between rtx treatments? (I'm not, but it seems like they often help)

I think for some people with refractory Wegs they do repeat rtx once the B cells recover versus waiting for disease activity after B cell recovery. Gwen and Palmyra's daughter Allison both seem to be getting that kind of treatment.

[me2]

Hi Sangye,
I don't remember if I was on immune suppressant between rtx treaments. My illness and treatments have gone on so long and become so complicated that I am loosing track. I have been on secondary suppressants for a long time so I'm guessing I was on something. Probably Myfortic as I know I went through the list of other things before ending up on Myfortic. It seemed to hold the WG for some time.
My visit with the doc didn't go well yesterday. They were in a hurry and told me I 'thrush' because I had trouble with my throat and mouth. I told him it wasn't something on the surface of my throat but the'meat' in my throat. I have had dilation. He knows I am due for dilation (meeting with ENT surgeon on Tuesday) and commented that he could hear I was having trouble breathing. I later remember I have been through his 'thrush' theory before and I got testedby someone else locally for thrush and it was negative. I guarantee it would be negative again. As I told him, my tongue was snow white and then cleared up in a couple of days. He asked his colleague "Have you ever heard of thrush spontaneously going away that fast?" Colleage says "No"
Still he calls it thrush. Why do doctors treat these symptoms as ok if they are dissappear so quickly. The WG moves around SO fast.
I am also having trouble with my vision. I never got tell him about that. I wanted to talk about my basic treatment and he tells me that I can start reducing my Cytoxan. What the hell???? Pardon my french but it is very, very frustrating .
He thinks if the pain is gone the problem is gone. WG don't work that way. It ebbs and flows. When it ebbs untreated it will return for the next round with a vengance - a vengance for neglect.
I feel trapped in this medical system where I have been going for a long time. (30 years) I have one of the senior doctors in Rheumatology but he profoundly doesn't seem to understand WG. Aches and pains are NOT just aches and pains if they are wg. They are like the starter bell on a round of boxing. If you don't listen to the bell you will just be standing there like an idiot as your opponent pummels the bleep out of you.
Sorry to be blabbering on and on about it but nobody else would know what I am talking about except people here - or a real wg doctor.

[Sangye]

I know exactly what you're talking about. While I've learned that many bizarre symptoms do ebb and flow and don't indicate Wegs activity, I've learned to pay attention to the ones that stick around and are my 100% accurate indicators of trouble.

I think you've got to get to a Wegs doc for an evaluation. I know frequent travel is an issue, but you wouldn't have to go often. At least go once to get a good treatment plan. It's a place to start, anyway. I agree that you're trapped with docs who are in over their heads and don't seem to know it.

[JanW]

I agree with Sangye. The worst is when the docs don't understand what they are dealing with but don't acknowledge that ignorance.

[elephant]

After seeing a Rheumatologist who really know Wegeners disease, I felt that an elephant came off my back. Even though my local Rhuemy consulted with her before, and she did a great job...I just needed to have another opinion. So if I get in big trouble with WG the specialist will already know me.

[pberggren1]

After seeing a Rheumatologist who really know Wegeners disease, I felt that an elephant came off my back. Even though my local Rhuemy consulted with her before, and she did a great job...I just needed to have another opinion. So if I get in big trouble with WG the specialist will already know me.

So does this mean we no longer call you Elephant?:wink1:

[elephant]

Good one PHil, I forgot my name!:rolleyes1::flapper:

[Sangye]

I'm tired of dragging around this Sangye, too. :laugh:

[Hakmanson]

FYI....I am on Cytoxin, Prednisone, Calcium, Iron, Septra, and Protonix....I don't have fatigue at all, actually too much energy and appetite! I even have to atorax to sleep

[Hakmanson]

Sangye...what is RTX? I noticed you mentioned this talking to someone else

[pberggren1]

Sangye...what is RTX? I noticed you mentioned this talking to someone else

RTX is Rituximab. It is the other big gun used to treat Wegs. It is usually used to treat Wegs after trying Cytoxan that did not work. It is not a chemo drug like Cytoxan but a biologic drug.

[gmyi]

hello
i had five sesions of that treatment when i was at emergency and as the doc sayed it saved my life i posted in the past a link with a lot of information about it

[Sangye]

Hakmanson, the excessive energy you're feeling is from the pred. It's not real energy that occurs with a strong and healthy body. In fact, if you exert yourself, you will seriously deplete the adrenal glands. This only becomes evident later on when you lower the pred-- you'll be incredibly drained. This is the hardest thing to convince newly diagnosed Weggies about. Pred makes you feel like you can lift a truck and masks the damage that is done when you try. If you picture it like alcohol, it might help. Drinking a lot might make you feel very good temporarily, but there's hell to pay the next day!

[Jack]

Shortly after diagnosis when still in hospital and pumped full of steroids, I felt really fit and well. I was helping out on the ward and wondering what all the fuss was about and why they would not let me go home. At that time, I was suffering from renal failure and several other organs were not in good shape either so I should have been feeling pretty rough!

[Sangye]

LOL I remember Luce saying the same thing, about being a helper in the hospital ward.

After 3 days of 1,000 mg IV pred a bunch of friends came to visit me in the hospital. I talked their ears off! They kept saying, "We heard you were almost dead and here you are with more energy than any of us!" They were exhausted and I was just getting started. I had no idea it was the pred--- no one told me.

[DEE]

on my first stay in hospital on 80mg preds i once got told off for helping others , was told to get back on my bed and rest !!
it was the ward that missed wg twiice:smile1:

[Doug]

That was my experience. The Cytoxan/Prednisone treatment wasn't working for me. I was given the option of going home, hoping something would kick in, or going to Denver, Colorado, to University hospital for the dialysis/plasmapheresis treatment. My pulmonologist noted it was experimental, but showed promise (this was seven years ago, I mention again) in patients like me who didn't begin to improve and started to flourish on Cytoxan/Prednisone.

As I recall, after the week (five days of dialysis), a day off, then the day with dialysis and plasmapheresis, I woke up the next day, able to breathe through my nose for the first time in 11 months.

I actually felt like I was starting to heal. I get emotional typing this. It was the best feeling I ever experienced in my life. I knew was was going to live! I guess I can have a few tears of joy about that, even seven years after! (For those of the Christian faith, yes, I did praise God and thank Him for this change!)

[pberggren1]

That was my experience. The Cytoxan/Prednisone treatment wasn't working for me. I was given the option of going home, hoping something would kick in, or going to Denver, Colorado, to University hospital for the dialysis/plasmapheresis treatment. My pulmonologist noted was experimental, but showed promise (this was seven years ago, I mention again) in patients like me who didn't begin to improve and started to flourish on Cytoxan/Prednisone.

As I recall, after the week (five days of dialysis), a day off, then dialysis-plasmapheresis, I woke up the next day, able to breathe through my nose for the first time in 11 months, and I actually felt like I was starting to heal.

I get emotional just typing this. It was the best feeling I ever experienced in my life. I knew was was going to live! I guess I can have a few tears of joy about that, even seven years after! (For those of the Christian faith, yes, I did praise God and thank Him for this change!)

I forgot Doug that you also had aweful nose and nasal crap to go through. It was only about 2months for me being not able to breathe through my nose. I can't imagine 11 months. And yes let's give praise to God.

[elephant]

Doug thankfully that worked for you. I too felt greatful to be alive!

[Sangye]

I forgot Doug that you also had aweful nose and nasal crap to go through. It was only about 2months for me being not able to breathe through my nose. I can't imagine 11 months. And yes let's give praise to God.
Lately I see religious references on the rise in the group and I'd like us to please honor the rules about no religion. I'm not a Christian and I don't praise a God. Consider how you might feel if I wrote "Let's praise Lord Buddha"

[Geoff]

I woke up the next day, able to breathe through my nose for the first time in 11 months.

I actually felt like I was starting to heal. I get emotional typing this. It was the best feeling I ever experienced in my life.

Isnt it totally bizarre, but yet understandable, how a relatively 'small thing' like breathing thru your nose, which the rest of society take as a 'given' can evoke such a feeling of euphoria amongst us!

Totally with you on this one guys.

[me2]

Lately I see religious references on the rise in the group and I'd like us to please honor the rules about no religion. I'm not a Christian and I don't praise a God. Consider how you might feel if I wrote "Let's praise Lord Buddha"


I would like both phrases but I certainly see the need to keep religion off the board. I have seen other places go down in flames over religion and politics. WG is enough to deal with. ha

[Sangye]

Yes, it's been a major problem here in the past-- hence the rule against it. As part of a minority religion (in the US, but not in the world at large) I see how those from majority religions often feel free to express their views as if everyone shares them. It can be hard for them to see how offensive that is to others. It wouldn't even occur to me to sign my posts with "Buddha bless you" and I'm a nun! It'd be nice if others extended that same consideration.

This is a forum for Wegs, not religion.

[pberggren1]

Sorry guys. I will try and keep God out of this Forum. I just forget sometimes because it is second nature to me.

[Sangye]

Thank you-- much appreciated. :smile1:

[Doug]

Revised Standard Version of my earlier response:

That was my experience. The Cytoxan/Prednisone treatment wasn't working for me. I was given the option of going home, hoping something would kick in, or going to Denver, Colorado, to University hospital for the dialysis/plasmapheresis treatment. My pulmonologist noted it was experimental, but showed promise (this was seven years ago, I mention again) in patients like me who didn't begin to improve and started to flourish on Cytoxan/Prednisone.

As I recall, after the week (five days of dialysis), a day off, then the day with dialysis and plasmapheresis, I woke up the next day, able to breathe through my nose for the first time in 11 months.

Sangye ~ I am very hurt that, once again, I have to censor my remarks when all sorts of Buddhist content goes past with no comment. Until now. I would not have commented had you praised Lord Buddha, Sangye, because I respect your right to follow- or not- any religion or way of life you wish. By mentioning my faith, I am not denying you yours. That's called tolerance, which isn't to be confused with acceptance. It's called respect for others, even when they get caught up in something that was very meaningful to them and forget you are intolerant of their faith. Oh, yes, it's against the rules, too. Good rule. We all need to watch ourselves in case our faith creeps into content. The easiest way for me to do this is to remove myself from active participation in the forum. I will, however, be reading the forum since there are new things coming up that I need to be aware of as a Wegener's granulomatosis patient. No hard feelings, mind you, just perplexity, frustration, and some other stuff that requires mention of principles and practices of a major world religion. I'll spare you details in the interest of...what? Peace in the valley. Let's call it that. Bye. Doug

[Jack]

Sangye - I just knew your comments were going to upset Doug. :(
Any religious reference is just asking for a reaction and a reminder of the rules does not hurt now and then (although it would seem that the reminder can provoke reaction too).

Doug - You know that this was not a pointed reference made towards you since you do in general avoid including religious content even though you might wish to do otherwise. Your contributions are always welcome - come back soon!

[chrisTIn@]

- come back soon!

Yeah Doug. Come back soon.

Do you have a new avatar?
Like the eyebrows... :biggrin1:

[Doug]

When I have anything germaine to add, I will. =(^+^)= The eyebrows are the five eyebrows of the sceptic.

[Sangye]

I'm not arguing about this again. My comments were in line with the forum rules.

[pberggren1]

I noticed we have lost another member on this site. I am refering to Doug of course. I am very upset about this!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!

[Jack]

Doug still comes and goes depending on how he's feeling. I hope he continues to come back with his input from time to time even if not on a regular basis. He knows we all care about him. :)

[pberggren1]

You are right Jack. He does know we care about him.

[marta]

Love ya Doug - aka Weggieboy.

Just in case you're peeking.

[Jack]

Doug seems to have disappeared from the members list and his profile is showing zero posts so I guess he has withdrawn his membership. If he still reads the pages, I'd like him to know that is a sad loss and his contribution will be missed. I honestly can't say that I fully understand his position since his beliefs are so far removed from my own, but I'm sure that some sort of understanding could have been reached between his own position and the rules applied to post content.

[Geoff]

Doug, if you are reading this then I have to let you know that you were the first person to contact me via this forum and I valued your friendship and the learned content that you contributed. I hope that there is an outbreak of Love, Peace, Understanding and Tolerance and Weggieboy returns to our extended family.

[jola57]

This is why we rulled No Religious Talk. I am sorry to see Doug go and can only hope that he will come back soon. Having said that, I can see how hard it can be for some members to add, praise God, Allah, or Buddah. As Geoff said above LPUT to all. Having this disease transcends all barriers and although our tolerance mught be at all time low, please show kindness and understanding to all.

[elephant]

Doug, hope you are doing ok.