Trying to beat this naturally, is this approach mad?

[Cekmsover]

Hi All,

I am new to the forum. I tried to sign up three years ago when I was told I had something wrong with me, but the password registration process simply didn’t work, I have been flying on my lonesome ever since.

Previously history is 33 male and played over 100 games of A grade Australia rules football and been an athlete most of my life. Then at 30 had an infection in my nose for two months, then had huge body wide joint pain with bad scleritis in both eyes (look like an alien!)

I tried sulfasalazine, 1 month of MTX (couldn’t handle it) then eventually they convinced me to do 2 500mg Rituximab infusions. I refused Cyclomosphide.

At present My C-ANCA is 160 and my PR3 is 19. The Rituximab worked for 6 months than the usual relapse.

I have had no major organ involvement and had a recent PET scan which showed my body was in good shape. I also have the nodules on my skin.

I am at a point where everyone in the medical community says I need Cyclomosphide, Cyclomosphide, Cyclomosphide. Does it really have to be that way?

I know that sometimes it save peoples life’s and for those that are on this forum that have had to take it, please do not take this post as disrespectful, I feel your pain as I am in pain every day.

Anyhow I did read the forum that there was a guy who achieved 27 years of drug free remission after treatment with Cyclo. Is this true?

As I have never had access to speak with anyone who has this illness other than doctors, I would appreciate if some of you could give me some inspiration of stories where people have come good. I also expect to receive some replies saying you’re crazy, your mad etc. for not getting the heavy hitting treatment, but for every bad story there is normally a good one. I hope to hear your responses.Hi All,

I am new to the forum. I tried to sign up three years ago when I was told I had something wrong with me, but the password registration process simply didn’t work, I have been flying on my lonesome ever since.

Previously history is 33 male and played over 100 games of A grade Australia rules football and been an athlete most of my life. Then at 30 had an infection in my nose for two months, then had huge body wide joint pain with bad scleritis in both eyes (look like an alien!)

I tried sulfasalazine, 1 month of MTX (couldn’t handle it) then eventually they convinced me to do 2 500mg Rituximab infusions. I refused Cyclomosphide.

At present My C-ANCA is 160 and my PR3 is 19. The Rituximab worked for 6 months than the usual relapse.

I have had no major organ involvement and had a recent PET scan which showed my body was in good shape. I also have the nodules on my skin.

I am at a point where everyone in the medical community says I need Cyclomosphide, Cyclomosphide, Cyclomosphide. Does it really have to be that way?

I know that sometimes it save peoples life’s and for those that are on this forum that have had to take it, please do not take this post as disrespectful, I feel your pain as I am in pain every day.

Anyhow I did read the forum that there was a guy who achieved 27 years of drug free remission after treatment with Cyclo. Is this true?

As I have never had access to speak with anyone who has this illness other than doctors, I would appreciate if some of you could give me some inspiration of stories where people have come good. I also expect to receive some replies saying you’re crazy, your mad etc. for not getting the heavy hitting treatment, but for every bad story there is normally a good one. I hope to hear your responses.:love:

[Debbie C]

Hi Cekmsover. Sorry it's taken you so long to get on here but now that you have you are in a good place with alot of caring people.I was dxed 3 years ago with noduled in my lungs. I was put on ctx ( cyclomosphide ) ,prednisone and bactrim. I was able to go into remission within 6 months. But it came back again. I am doing pretty well now, only on 5 mg. pred. But I am one of those people that can not handle drugs and would rather find a more holistic approach. I had 1 rtx ( rituxin) infusion and had bad side effects and in my opinion I would rather take ctx than ever have rtx again ( I know I won't ) so the thing you really need to do is find a good dr. that's knows about wgs and see what he says. There are a few people here from Austraia and I'm sure they can help you more. Keep in touch and let us know what happening.

[annekat]

Welcome, Cekmsover. The general sentiment on the forum seems to be that RTX is preferable to CTX these days. But I was treated with CTX and it wasn't a problem for me, and it cleared up my lung involvement very effectively. I did not achieve remission in 6 months like Debra, but the dosage was reduced over time and then I was switched to MTX. I made sure to drink lots of water while on CTX. The side effects were only bad for a couple of weeks, then I got used to it, just like with other drugs. My sinus and ear issues have taken longer to clear up and probably never will completely, due to the damage incurred by the disease. But I'm doing very well, might even be in medicated remission, though no one has said so. Using a maintenance drug seems to be pretty important in preventing flares, so I'm glad to continue on the MTX and prednisone, and neither are at high doses presently. In the end, I'm glad I got CTX instead of RTX, for various reasons, including cost, logistics of the infusions, uncertainty whether it would work for me, etc.

I'm not sure what you mean by beating this "naturally". Without drugs? With herbs, or what? That would be pretty risky to try, though there might be some "natural" things you could try in conjunction with the drugs, such as an anti-inflammatory diet. You might be interested in the recent thread on the use of cannabis, as there are some new theories and things being tried for people with autoimmune diseases and other illnesses, and some ways of getting the benefits without experiencing the psychoactive properties of the plant. But here have been warnings on here from a holistic doctor about trying to take a natural and non-medicated approach. She stressed that we should not use substances or methods that will stimulate the immune system, nor should we try to heal ourselves without the meds.

Good luck, and keep us posted.

[Cekmsover]

Hi Deb,

Thanks so much for taking the time to reply. Yes it's a bummer we have to take these meds.

I have tried so many natural therapies, my latest approach is this:

Kill the bugs- I take Olive Leaf Extract Daily - stops me picking up more bugs which sets your system off- I also take a product called Triplex which kills stomach parasites. I too take 5mg of pred and figure it's still enough for little opportunities critters to make my WG worse. Have you notice that if you get a bug or get a cold it's makes your WG worse? I have anyway.

1 take 1500mg of Krill daily, decent probiotics and the rest is I drink two green juices (kale, ginger, apple, celery, spinach) every day. I normally put in the thermoix and just blend up and drink through out the day. Really good for pain and just good for overall health.

The last one that when I follow I really feel benefits is no sugar. Hard to do, but I went sugar free for 3 months before and I did feel a lot better. Bacteria survive on glucose, and if there is none or very little available, it firstly is better for your body and secondly gives you a chance to clear infections.

I forgot the most important two, excerise every day for 30mins and get 9 hours sleep.

The above hasn't cured me, but has made me feel stronger and deal with the side effects much better.

Cheers.

[Pete]

Hello Cekmsover,

This disease is nothing to mess with. It can flare up and make your life miserable and could kill you. I also took cytoxan (100-150 mg/day orally) for about 16 months. I tolerated it pretty well for about 14 months, but then it started affecting my bladder a bit. I also took bactrim 3 times a week and started out at 60 mg/day of prednisone. I've been on methotrexate for about a year with no ill effects. I've gotten off prednisone altogether. I still take bactrim 3x/week and have been taking 1 mg/day of folic acid to prevent possible hair loss.

At disease onset two years ago, I was a 64 year old male who had been swimming for fitness (1500 meters in about 40 minutes) and power walking (about 4 miles/hour) - doing one activity or the other almost every day. If I rated my health before disease onset at 10, my current health rating would be 7-8. I have some lung problems and my right ear took a big hit, but other than that, I'm OK.

I'm slowly losing the 25 extra pounds I picked up while on prednisone. It's a slow go, but with moderate exercise, portion control, and healthier snacking (fruits instead of cookies and ice cream) the pounds are coming off at the rate of one or two per month. The size 36 pants are starting to have some slack in them, and I hope to be back into my pre-disease size 34s before Christmas.

To reiterate Anne's thought, I would be very careful trying to beat this disease naturally. You can live with it if you can find a treatment regiment that you can handle without too many adverse side effects.

Good luck and better health.

[Yvonnea]

Hi Cekmsover,

I was diagnosed 9 years ago when the only option was Cyclo and pred. Put me in remission for a couple of years and then another a relapse and then another three months of it. Although I tolerated it quite well, I still hate the drug. And like you would try anything before going back on it. I took Rituximab two years ago and since then have been flare free....although not totally symptom free. I know a few people in England that take rituximab infusions every six months ...can you not take it again? My Doc says he will use it for me should I relapse and only bring out the "big guns" i.e cyclo when a major organ is affected.
I have also altered my diet and have switched to Paleo diet (no wheat/gluten/dairy). For me it gives me so much more strength and energy. Definitely helping. I wish you well and hope you find a treatment that suits you. Like everyone else, I would caution that you stay on top the disease and if you must take cyclo...take it.
Best wishes
Yvonne

[Mikek]

Do you have a good Wegs doctor? Are to lose to a major city/hospital.

[annekat]

Cekmsover, all the things you are doing to feel and be more healthy sound really good. I just would not risk doing without the Wegs drugs. But you are doing much better than I am at keeping to a regimen of healthy eating, good supplements, and regular exercise. I think you are right that eliminating sugar is a big one! There is so much they don't know about this disease and you are right to be proactive in managing it and to want to minimize your use of toxic drugs. I'm just afraid that we might need them to survive, but perhaps you could shorten the time they are needed, with your healthful lifestyle.

[Alysia]

Hi cekmsover,
I like the way you are handling yourself :thumbup:
I was not treated by ctx. only lately I got RTX. I think, but not sure (prob someone here knows more) that you cant get both rtx and ctx.
my doc told me that Im going to get RTX every 6 months.
Im also walking every day 30 min, not eating sugar as much as I can (sometimes I cant resist chocolate...), Im not eating hi-fat food (no fat cheese or meat or "oily" food etc.), drinking a lot, sleeping about 8 hours. Im also going to psychotherapy, because stress can cause a flare.
welcome to the forum and good luck on your way to long lasting remission.

[annekat]

Hi cekmsover,
I like the way you are handling yourself :thumbup:
I was not treated by ctx. only lately I got RTX. I think, but not sure (prob someone here knows more) that you cant get both rtx and ctx.
my doc told me that Im going to get RTX every 6 months.
Im also walking every day 30 min, not eating sugar as much as I can (sometimes I cant resist chocolate...), Im not eating hi-fat food (no fat cheese or meat or "oily" food etc.), drinking a lot, sleeping about 8 hours. Im also going to psychotherapy, because stress can cause a flare.
welcome to the forum and good luck on your way to long lasting remission. It is my impression that you can get both CTX and RTX in your lifetime, but I'm pretty sure that you would not get them at the same time or within the same general period of treatment. Most get one or the other. But some who have already had a lot of CTX in previous treatments may be asked to go with RTX in later serious flares, because it's not good to have too much CTX in one's lifetime. Or if RTX doesn't work for someone, they could try CTX. If a flare is not too serious, RTX or CTX might not be needed, but MTX or Imuran, or an increase in dosage of either, along with an increase in pred, might be enough. I'm certainly no expert, but this is what I gather from reading this forum and from personal experience.

[Debbie C]

Cekmsover...I like all the things you are doing. They were talking on a show the other day about Olive Leaf extract making you feel better when ill (but I quess it taste horrible,I've never had it ) I also have never heard of Triplex..I wonder if that is sold in the states. I do try to eat alot better and excerise.My boyfriend had a 5 valve heart bypass at 49 and he is now an health and excerise nut and has taught me alot about reading the labels of things I eat. I do try to walk every day and do yoga a few times a week. I also eat alot of fruit. I look at it this way, something is gonna kill me and I hope it's not this disease but who's to say all these toxic drugs is the right way to go. It seems like the drs aren't quite sure,years from now they may come up with something that is actually good for you !All these drugs can cause some sort of cancer and the side effects from rtx are even worse.So I'm gonna keep doing what I've been doing as long as I can.

[drz]

It is my impression that you can get both CTX and RTX in your lifetime, but I'm pretty sure that you would not get them at the same time or within the same general period of treatment. Most get one or the other. But some who have already had a lot of CTX in previous treatments may be asked to go with RTX in later serious flares, because it's not good to have too much CTX in one's lifetime. Or if RTX doesn't work for someone, they could try CTX. If a flare is not too serious, RTX or CTX might not be needed, but MTX or Imuran, or an increase in dosage of either, along with an increase in pred, might be enough. I'm certainly no expert, but this is what I gather from reading this forum and from personal experience.

I got two RTX and one CTX IV shortly afterward and then was started on oral CTX a few days later but then I also got umpteen plasma exchanges and other things at the same time since I had a pretty severe case. My back up plan if an increase in azathioprine doesn't handle a flare is to have RTX IV again, not CTX according to my treating doctors. So far I haven't needed it, just some adjustments in pred and azathioprine when symptoms got worse.

[renidrag]

Yes there can be drug free remission, heading into year four on June 30.
Dale

[me2]

I had a drug free remission that lasted about twenty years. This was after almost two years of daily oral cytoxan. Rituxan had not been invented yet.

[mishb]

Hi Cekmsover and welcome to the forum.

I am so glad that you finally made it on.

I have only been on MTX so can't comment on the CTX side of things but I hope others have helped you out.

[Debbie C]

For those of you that are in a drug free remission,what determines this. My bloodwork (thank god ) has been good for a long time but yet my reumy at CC said I will be on pred the rest of my life. I'm wondering what determined you were well enough to get off everything ?

[DJS]

For those of you that are in a drug free remission,what determines this. My bloodwork (thank god ) has been good for a long time but yet my reumy at CC said I will be on pred the rest of my life. I'm wondering what determined you were well enough to get off everything ?

I think my wife had a goal of getting off all drugs so she really wanted off Cytoxin and Prednozone. Her Dr told her that she would be on that Immuran for the rest of her life, and same with that Mepron. She intends to get off Mepron by the end of this year mainly because of the cost. Due to Mepron, she got to experience the Donut-Hole in the Medicare part D coverage.

[annekat]

I'm not familiar with Mepron and am wondering what it is. I could do a search, of course, but am wondering if others on here take it.

[DJS]

I'm not familiar with Mepron and am wondering what it is. I could do a search, of course, but am wondering if others on here take it.
There is a section in this forum for medication discussions and there is a thread there under Mepron. Basically her lung doc prescribed that while she was in the hospital with her lungs full of gunk. This is supposed to prevent parasites from growing.

[renidrag]

I don't know that I can tell you all the answers as to remission. This is how it went for me. Doctor who made diagnosis was lung md and he started me on 80mgs Prednisone, 150mg of ctx, Bactrim and anti reflux stuff. I started on August 9, 2009. Blood test biweekly, ct scan, bone density, eye baseline, hearing baseline. Stayed true to water drinking and protocols that he made known to me. By October I had a blood clot and in December it resulted in an embolism which resulted to a filter in my vena cava. So I was now best friends with WG meds and Warfarin. Pulmy started lowering Prednisone after one month to 60 and down from there to pred free February 12, 2010. It was at this time I had the chance to see Rheumatologist Dr. John Stone as Mass General. He thought that since I was off the pred I could stop everything so I started tapering ctx and stopped Bactrim and Omeprazole. Oh June 30 at an appointment the Doctor asked me how I felt, I told him and he suggested I stop the ctx and see what happens. Looking back I guess there was some risk but there is everyday. That is how I got off the drugs.
Please I am by no means any where near the man I was pre dx. I am on SSDI with COPD, Peripheral Neuropathy, and still have weggie symptoms, mainly FATIGUE. According to blood and lab tests, I have limited inflammation, low grade. I have to be vigilant as we all do.

If I may, we have in our special company a weggie who tried to "cure" herself in a holistic fashion as it was also her lifestyle. She is a very vocal proponent of Medical intervention and mentions how close to death she was.
Proper care is essential and any medical procedure has 'risk and reward' I guess each of us must decide for ourselves and loved ones.
Dale

[annekat]

There is a section in this forum for medication discussions and there is a thread there under Mepron. Basically her lung doc prescribed that while she was in the hospital with her lungs full of gunk. This is supposed to prevent parasites from growing. Thanks. I should have looked there and will try to remember to do so when I have more time.

[me2]

I too tried to cure myself thirty some years ago working with Naturopathic doctors. They almost killed me before I went back onto Cytoxan. Becoming more healthy does not cure this disease.

[Debbie C]

Wow Dale they only had you on meds for 6 months and nothing since...that was fast.At first I was on everything you mentioned also for about 6 months and my first reumy said I was in remission (although he didn't even believe I had wg because my anca test were always neg. ) so he to took me off everything. And I started getting symtoms again. But I basicly feel pretty good so I was just wondering how some can be drug free. I didn't know if your labs were good for so long or what. Don't get me wrong ,I do take the pred and get my monthly bloodwork and I just do want I can to stay healthy. Hope you continue to stay well.

[annekat]

Remission is a subjective word, to a degree. Dale and Kirk clearly went into a drug-free remission after their treatment with CTX. I wonder too about their labs and their schedule of tapering off the meds. But Debra, sounds like your doc was throwing the word around a little too casually and was wrong to take you off the drugs, since you relapsed with symptoms. I think that would happen to me, too, if I stopped the meds right now, even though I feel very good and almost like I could use the word remission. I'd have to taper my pred down from 10mg. and probably my MTX, too, before I could just quit them. Negative anca doesn't always mean no Wegs, as I'm sure you know. In any case, it sounds like you are doing really well, and if you are just on pred, and feeling as good as you are, and your labs are good, maybe someone would say you are in a medicated remission.

[kevinallen]

Ive heard yucca extract is a good antiinflammatory but have not read into much

[annekat]

Ive heard yucca extract is a good antiinflammatory but have not read into much There seem to be lots of anti-inflammatory things out there. it would be nice to know more about all of them. Yucca sounds worth looking into.

[Barbara N]

I don't think you are mad. after 6 years of medication that didn't work and made me feel terrible all of the time I started riding therapy and it has really worked for me. I don't recomend it to anyone without their doctors approval. I live in a backwards area and the doctors have told me they can't cure me, why give me the drugs that make me feel so bad and then the say that they are trying to prepare me for what is to come. that bit >I don't understand unless they mean dying. They are giving me a pain treatment and I thought it was so I could stop my medication but it is to help the medication when the pain gets worse. I am feeling strong and positive now and hope to go into remission again. Good luck and welcome to the group. I don't think anything is crazy here, we are dealing with such a strange disease. >It hits everyone differently.

[Barbara N]

I was told I couldn't take anti-inflammatory because my kidneys can't deal with them.

[Barbara N]

There seem to be lots of anti-inflammatory things out there. it would be nice to know more about all of them. Yucca sounds worth looking into.

I have tons of Yucca growing in my garden, is it the same thing. A tall plant with spikes that really hurt and a beautiful white flower on the top I also have lots of Aloe in my garden and I know that works for lots of things. Here in the desert we have so many medicinal plants and I know a lot of them really work. I wrote an article about it on my blog if you are interested about how the pharmacutical companies are stopping us from getting this information. For example 2 chrrimoyas a day are more beneficial than radiation and chemotherapy combined, but it is cheap and sort of a small tree that any one could grow on their terrace.

[Barbara N]

Has anyone noticed any signs of dyslexia. I don't have any idea if it comes from WG but I have what they call adult onset dyslexia. It started a few years ago and doesn't seem to be getting any better. Do you think it is old age or could it be a symptom of WG?

[Barbara N]

Remission is a subjective word, to a degree. Dale and Kirk clearly went into a drug-free remission after their treatment with CTX. I wonder too about their labs and their schedule of tapering off the meds. But Debra, sounds like your doc was throwing the word around a little too casually and was wrong to take you off the drugs, since you relapsed with symptoms. I think that would happen to me, too, if I stopped the meds right now, even though I feel very good and almost like I could use the word remission. I'd have to taper my pred down from 10mg. and probably my MTX, too, before I could just quit them. Negative anca doesn't always mean no Wegs, as I'm sure you know. In any case, it sounds like you are doing really well, and if you are just on pred, and feeling as good as you are, and your labs are good, maybe someone would say you are in a medicated remission.

I went down to 5 mg of pred for about 3 months before I stopped taking it. Sometimes, if my kidneys get really bad they zap me with 30 mgs of preds for 6 weeks and then take me off again without tapering down. The pred has never helped any of my results or improved my situation it just gave me terrible side effects that I couldn't stand. I know it affects people differently that is why they call it the drug we love to hate. I just hated it, there was no love or feeling better. I also use the word remission to easily. I know most of the time I am not really in remmission but I use the word when I go more than several months feeling great and with no meds other than maybe a few maintainance drugs, which for me now is really just the morphine for the pain. If they hadn't of done so much damage to my face I probably wouldn't have that pain either.

[annekat]

Has anyone noticed any signs of dyslexia. I don't have any idea if it comes from WG but I have what they call adult onset dyslexia. It started a few years ago and doesn't seem to be getting any better. Do you think it is old age or could it be a symptom of WG? I have noticed the same thing and am attributing it to old age. However, mine would probably not be considered severe, compared to the real learning disability that some people have from childhood. Mine is just things like reversing letters or remembering things in reverse of how they actually happened or are. I'm sure there is a lot more to it than that for people with true dyslexia. I'm curious to hear what sort of dyslexia signs you have. And yes, I imagine it could be related to some of the drugs.

[Debbie C]

Barbara first of all,what is chrimoyas ? Secondly I read your blog and I had tears running down my face to think of all the suffering you have been and still continue to go thru. You are a VERY strong woman and I admire you for your strength and courage. Your horses are beautiful,I can see how they would make you feel better and bring you confort. Do you think that the way they lower your preds without any weaning from them can cause you to become more ill ? As far as dementia goes, I feel like I am sometimes losing it also,I know I have no patience and get irrated easily ( but I think that is due to the pred ) but I often forget things.
I pray that things will get better for you and you continue to enjoy riding for many years....Animo:hug2:

[Cekmsover]

Hi Dale,

I am humbled by all the replies here such a caring bunch, and all having there say without being rude which is great.

So drug free remission for you make me feel pumped for you and your family and I dont event know you.

What has been your approach....

Cheers.

[Cekmsover]

whats been your approach Dale.

So glad to hear this, and in my heart I just know it can be done.

C

[Barbara N]

I have noticed the same thing and am attributing it to old age. However, mine would probably not be considered severe, compared to the real learning disability that some people have from childhood. Mine is just things like reversing letters or remembering things in reverse of how they actually happened or are. I'm sure there is a lot more to it than that for people with true dyslexia. I'm curious to hear what sort of dyslexia signs you have. And yes, I imagine it could be related to some of the drugs.

mine would not be considered dyslexia but a mild form of it. I reverse letters all of the time, not much trouble with numbers but it is something that I never had before and it has been getting worse over the last few years. I already had to change 8 words in here.

[annekat]

mine would not be considered dyslexia but a mild form of it. I reverse letters all of the time, not much trouble with numbers but it is something that I never had before and it has been getting worse over the last few years. I already had to change 8 words in here. That does sound a bit worse than mine, having to change that many words in that short a post. However, I have noticed since starting to use email 15 years ago or so that people in general do tend to reverse letters occasionally when typing. The most common one I've seen is "teh" for "the". So I'm wondering if a little of this is normal for humans.

[mishb]

I have replied on something like this before. Being in Admin and Insurance I am constantly typing all day.
Now when I type, I have letters transposed all over the place. I read it when I type and it appears to look okay and it's not until I hit the send button that I can see where it has gone wrong.

Like you Barbara, I have already corrected 8 words in this sentence. The number of times I write something and then have to edit the post.....is countless.
I blame the pred :predrage:

[Barbara N]

I have replied on something like this before. Being in Admin and Insurance I am constantly typing all day.
Now when I type, I have letters transposed all over the place. I read it when I type and it appears to look okay and it's not until I hit the send button that I can see where it has gone wrong.

Like you Barbara, I have already corrected 8 words in this sentence. The number of times I write something and then have to edit the post.....is countless.
I blame the pred :predrage:

Maybe it has to do with WG . something new we can tell the doctors. and yes, I always find it after I push the go button.