Wagner granulmotisis

[monikagoyal]

hi

I am diagnosed with Wagner in July 2014. Does any one can help me to find out natural treatment for Wagner. I am scared of prednisone's side effects.

[Jase222]

I asked my dr if there was any other medication apart from steroids he said the best and only chance of surviving was with steroids and he was not confident I would live and its the best all round med , side effects aren't that bad considering !

[Tinkytink]

Hi Monikagoyal, sorry to hear about your diagnosis with Wegeners Granuloma, nowadays its more often called GPA which is a bit easier to say...you have come to the right place for advice as there are some real experts on this site that will offer you great advice. you will see that with correct management of your condition, you can keep relatively well, but it is important that you dont neglect proper treatment as it is not a condition that should be treated lightly. look out for posts from John Mills who is a great support. Hope everything goes really well for you.

[julsno]

Have tried going without the steroids and just using the meds that a natural healer gave me, he is licensed. But I ended up having chemo again as the wg got so bad. I am now still recovering from that. Julie

[Phill66dirt]

Hi about a year and a half ago I was diagnosed with systemic vasculitus and was in pretty rough shape. My Drs put me on 60 mg of syeroids and I asked if this was safe and he told me right now it's take it or die. I'm now on 5 mg a day with also taking immuran and doing pretty good. Yea went through typical side effects but survived it. Good luck you can do this

[tara88]

I was diagnosed the same time as you. I started on 40mg prednisolone I am down to 7.5mg now. The consultant never want to keep you on it if they can help it. It seems the steroids are the life saving drug and with the right treatment plan you can survive this horrid disease. I never thought I would be where I am now. I am back at work full time and enjoying life again we my kids and family. This time last year I could not even put my cloths in by myself. Side effects for me was weight but even that is slowly coming down. Quality of life is 10 fold. GPA does need aggressive treatment but you will come out the others side.wish you well 😊positive mindfulness helps too along with a good diet✌️

[monikagoyal in reply to tara88]

Thanks Tara for sharing your experience. I was also bring down to the 10 mg. or prednisone but I am having sinusitis that's why my doctor increase my dose to 30mg.I am just wondering are you on remission state. I also love my work and kids. Its good to hear your working and enjoying with your family. I am more concerned that if i can do work or live normal life with my family because i do not want to be a sick mom. Thank you so much for sharing and i wish you a very healthy life ahead.

[tara88 in reply to monikagoyal]

Just take it day by day. First think about you and what you can do. Illness will effect all in you family but you don't let it take over you are you not you illness and you can come though. Trust yourself and except things will be different but you are always gonna be the mum and you. I have not been told I am in remission yet. I do still get pain in legs and back. Each time I come down on the steroid I get crustings and sinusitis but this soon passes. I am checked at Hammersmith every 4 weeks at present and everything seems good with bloods. Have neurologist appointment on the 21st April and still have appointments with ENT and Eye doctors. I just know this is part of what needs to happen at the moment so I can control the GPA and get on with life as best I can. Wish you luck and wellness

[monikagoyal in reply to tara88]

Thanks Tara to encourage me to think about a happy life ahead. I was very depressed before. I will try my best to fight with illness with positive mind.

[John_Mills Volunteer]

Monika, I'm so sorry to hear that you have been diagnosed with WG (or GPA).

You should understand that until the 1950s when steroid treatment became available, everyone with WG was dead with a short time. Even with steroids, it was not a cure as they died from the side effects of the steroids. It was only in the 1970s when cyclophosphamide was introduced that there was a real expectation of long term survival and return to a normal life.

Steroids are only part of the treatment for GPA. Depending on how severe the effects of the disease are, you usually need a short "induction" period with very powerful drugs to stop the disease progressing. These are usually either cyclophosphamide or rituximab, usually with steroids. This is then followed with a long period of "maintenance" using less powerful drugs plus a steadily reducing dose of steroids.

Most doctors know about the harmful side effects of steroids and try to give only the minimum dose. With luck, you might become completely free of drugs, but many, like me have to keep taking them for years. But it's much better than being dead!

Many of the people in this group have gone through this and now lead a good life. Remember that the longer the disease continues without being properly controlled, the more permanent damage will be done.

Sorry but GPA cannot be cured, only controlled. There are certain commonsense dietary rules that will help your recovery, but no natural remedies.

Best wishes - John

[monikagoyal in reply to John_Mills]

Thanks John for great details. yes, I was taking steroid and cyclophosphamid. but i couldn't tolerate cyclophosphamid. Now I got first infusion of rituxmab. But still I am facing sinusitis infection. so I am more scared if i will get better one day. Though My doctor is taking care of it.

[monikagoyal in reply to John_Mills]

Hi John you said there are some dietary rules could you explain those dietry rules. I have another question if GPA can relapse while i am on medication.I have upper respiratory Vassculities.

[Tony-LakeDistrict]

Hi, don`t be afraid of the steroids, they will keep you from meeting the chap with the hood & scythe!

make sure you have regular bone density checks, keep an eye on your blood sugars,

Life` Will` return to a "new normality".

I had what seemed at the time horrendous side effects, but now it all seems like a dream, & life is good.

Oh yes, ask your specialist if you can sign on to "Renal Patient View", this way you can see your own improvements

Tony

[AndrewT]

Dear monikagoyal,

As Tony has said, far better a few 'side effects' than a wooed overcoat! I have an uncategorised ANCA vasculitis and have been on steroids quite a long time, nearly eighteen years actually. I had a Kidney Transplant, in July 2013, so am also on tacrolimus, along with, other drugs. Yes the 'side effects' can be a nuisance, I'll admit, but surly better that than a very, very, very long 'sleep'! I wouldn't, in any case, worry too much about these-the hospital will, quite regularly, check your Bone Density. If there is a problem action can be taken. As regards the other effects, mainly constipation/tummy troubles-eat fruit/drink fruit juice and have a 'sensible' diet. I know that this, very often, easier said that done but, with care, you should be alright (keep some laxatives available, just in case, 'things' get really stuck).

Above all, and I KNOW, that this is far easier to say, than do, but try not to WORRY. I too wasn't expected to live- my mother was told that I wouldn't make it through the night. (I Guess that I'm just a cantankerous, bloody-minded, stubborn, awkward and, down right, non-compliant so and so!) In any event I clearly didn't want to die, did I? I don't know about you but I never did do what 'they' said, did you?

Anyway I've 'waffled on' long enough now, once again, try not to worry.

Best wishes AndrewT

[monikagoyal in reply to AndrewT]

Thanks for sharing. It makes me feel a bit relax.

[joycebelden]

i had a treatment but in cosmetic treatment in india through mirage healthcare. they give best services and packages. if u want u contact mirage healthcare..... tc