Anyone have any advice for natural, alternative treatments for Churg Strauss?

[Tambo7]

Newly diagnosed..Cant face a life on steroid and the awful side effects! Would really appreciate any experiences. Many thanks

[PMRpro]

Life on steroids is NOT half as bad as you may think - used properly and carefully they allow a relatively good quality of life for a long time.

Although you can help your body by eating a diet with plenty of antiinflammatory foods (google is a great help find that advice) there are NO "natural" "alternative" treatments for vasculitis of any sort that work and any that claim to do so are from snake oil salesmen who have one agenda: lining their pockets at your expense.

Leaving inflammation untreated in your body would leave you open to a lot of other long term effects, some of which are far worse than most of what happens when you take steroids and a few of which may lead to you not having a "life on steroids" or a life at all. Steroids have well over 80 listed side effects. We haven't yet met anyone who's had them all! Some people have almost none. Some are up to you - weight gain and diabetes can often be avoided by restricting your carbohydrate intake - all that horrid sugar that is so popular at the moment!

I'm not saying there is nothing you can do - there is, eating a good diet is the first and most important and adding certain foods may well help. However, you don't need to spend a fortune on expensive so-called superfoods or supplements and don't ever take "natural" supplements of any sort without asking your doctor or the pharmacists - because many will interact with the prescription medications you are taking and can cause real trouble.

If a "cure" sounds too good to be true - it probably is.

[Tambo7 in reply to PMRpro]

Thank you so much for taking the time to reply, really appreciated! I hadn't thought about untreated inflammation, just thought there were less toxic ways of treating. I already have taken so much pred for asthma over the years, am concerned about increasing paper skin and bone health to name a couple of the 80 you mentioned. Definitely agree about diet! Thank you again and best wishes.

[EOS7D in reply to Tambo7]

Dear Tambo7

If you check the vasculitis pages you will. See a bit of my cerebral history.After much chemo and other medication then my skin also became and is still thin.To protect the skin and keep it moist on the legs and shins I was prescribed Diprobase cream, my prescriptions are for 500 mg tub.

I am sure it has prevented. Ulcers from developing.

[jeff81999 in reply to PMRpro]

And BigPharma does not engage in snake oil sales?

Right.

[Sickandahalf in reply to PMRpro]

I think you've now met the person with all the side effects. Ok, I only haven't become obese... But my life has been impossible with prednisone. It causes me so much pain all over. Changes my personality so much it's not even me... And when I reduce the amount, or when I've been off it at times, I can't remember the whole time I was on it. My life is just passing. I don't remember any of it.

The natural supplements (herbs and minerals) I take have helped so much. They can make the difference of not breathing for a week at a time... (Barely) and actually being able to do things.

Natural things are really helpful when dealing with inflammation. They can't replace prednisone when you need it for a massive eipsode... But the rest of the time, they're nearly miraculous.

I have severe side effects from just about all pharmaceuticals. Become allergic to anything I take for long as well.

I'm pretty sure I get more than 80 side effects from prednisone!!

Had I been treated properly and not ignored for 15 years by the medical community, I probably wouldn't have ever needed it.

I know old thread . ....

[PatriciaAnn]

Hello Tambo

Sorry to read your post and hear about your diagnosis. This is a very upsetting and worrying time. Poor you, your head must be swimming - we know how you are feeling and thinking because we have all been there.

Vasculitis diseases are not pleasant and many, if not treated properly, can be fatal. None of us have ever wanted to take the drugs we are prescribed, but we really don't have much choice. There have been people who say alternative treatments have worked for them - but none of these are clinically proven.

Whatever advice you may get here, and whatever you decide to do, may I suggest that you do this in conjunction with, and following discussion with your medical team. Treating vasculitis isn't something to do on your own.

PatriciaAnn

[Tambo7 in reply to PatriciaAnn]

Thank you so much PatriciaAnn for your kind words. Yes you are right, I guess I'm focusing on the drug side effects, rather than the fact that they are helping. I do feel significantly better after only a few days!. Hope you are well! Thanks much again!

[John_Mills Volunteer]

You have received some excellent advice from both PMRpro and Patricia, Steroids are almost always an essential part of the initial treatment for all types of Vasculitis, but "a life time" on steroids is not usually the treatment today. Doctors usually recognise the dangers of long term steroid use and where ever possible try to reduce or eliminate their use as soon as possible. The immune supressing drugs such as Azathioprine, Methotrexate and Mycophenolate are usually known as "steroid sparing" drugs so in most cases treatment involves an initial period use of a powerful immune suppressing drug in combination with high dose steroids, this is to bring the disease under control, this is followed by a long period of maintenance using the drugs mentioned above in conjunction with a progressively reducing steroid dose. Most patients achieve remission and are able to come off steroids all together, although some need a very low dose long term. The ultimate goal is full remission where no medication at all is necessary. Although not everyone quite manages to reach this happy state.

Arthritis Research UK do have an excellent reliable and balanced 60 page guide to Complementary and Alternative Medicines for the treatment of RA, Osteoarthritis and Fibromyalgia. Much of this information is relevant also for Vasculitis.

best wishes

John

[Tambo7 in reply to John_Mills]

Dear John

I am so grateful for the responses to my post. How caring people are! I already feel a little less scared meeting those who are way ahead of me. Full remission! How marvellous would that be?! At this point I guess I'm trying to learn as much as I can about the disease and am very open to any advice. Hopefully, down the line, I too can help others! Many thanks again.

[Hidden]

Hi I have cerebral vasculitis I decided I wanted to limit what I took. Iam an alternative therapist and practise reiki I wrote a blog last year about it . A great website dr David Hamilton " using science to inspire " I also use an earthing mat there is a book called earthing by Clinton Ober .This approach is not for everyone and you should always take medical advise as you can't muck about with vasculitis . but as my consultant says to me what ever your doing keep doing it . I have been on 50 mgs of azathioprine since 2004 and it has never been increased .if you ever need any more help just let me know regards Diane

[Tambo7]

Dear Diane,

How very kind of you to take the time to reply to my post! I will certainly look up your references. I have enjoyed reiki in the past and am totally open to alternative management ideas. Thank you again, much appreciated. At least I don't feel quite as isolated now with my rare disease! I hope you are staying well!

[PatriciaAnn]

Hi again Tambo7. Diane mentioning reiki reminded me of an article which was published in the V-UK Autumn 2010 Newsletter Journal. Diane was that your article by any chance? Surely it can't be a coincidence. Anyway if you would like to read the article go to the Newsletter page and scroll down for the link to Autumn 2010 - it's on page 6. vasculitis.org.uk/about/new...

PatriciaAnn

[Tambo7 in reply to PatriciaAnn]

Thank you PatriciaAnn, I certainly will.

[Hidden in reply to PatriciaAnn]

Hi PatriciaAnn yes that was me thanks for pointing it out regards Diane x

[ricky5]

my mom has vasculitis and she takes six oral chelation pills a day and if she misses for 3 days she is sick,its worth a try.We buy it online,good luck

[Letloverule in reply to ricky5]

Thank you for sharing!

[Letloverule]

I'm looking for the same. My son has Churg Strauss and the fasenra helps tremendously, but the cost is $8,700 a month. He's been on the same policy with BCBS for 24 years and they are refusing to pay for his treatment.

[tegteg]

What helps me mainly with my skin inflammation is cold water plunges. I try to go swimming in cold water every week, and I am talking as cold as it gets. However, it doesn't help other symptoms too much.