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.

[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
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
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.