disease or side effect

[me2]

Inge I'm sorry I don't have time to write you a longer response tonight. Let me just say that I went to extensive lengths to treat my self with alternative medicine and almost died as a result. This was 36 years ago. Since then I have tried to find alternative treatment or someone with a credible story of treating themselves with something other than the standard medicines. I have not found one.

I do still use alternative medicine to support my general health and counter act some of the bad effects of the drugs. Others here have done so as well.
I would ask your friends with the great advice to direct you to a person with WG who has followed their advice and done well- from that person there might be something to learn.
If they give advice without knowing of at least one case then I would not listen to them. What good is advice not backed up by direct experience? It is just wild theories. Well intended perhaps but not wise.
I hope you are feeling better soon.

[ingemlb]

Just woke up feeling a bit better but I will definitely get help if things deteriorate during the day Thanks all again for your support and kind words.

[MCC]

I think it is sensible to be wary of the medication we take as there is no denying it is toxic (see my other thread!) and I can understand your friends concerns as I have them too. As I understand it, the treatment is the only option right now and it IS life saving, BUT long term the chances of certain cancers and other issues are greatly increased.

My thoughts on it are, take it but work towards getting off it as soon as possible in consultation with your doctor.

[ingemlb]

Thanks MCC. That's what I am hoping for as I am sure we all are

Just started reducing pred from 40 to 35 for a few days. then want to go back to 30 and see if the pain stays away.

[MaxD]

Personally, I never take advice on medication from anyone without a medical degree (and, no, osteopaths and chiropractors are not medical people). With friends and loved ones, I would tell them upfront that I need their support but not their advice on medical matters. Tell them you hear their concerns and you will follow up with your doctors as you choose. Yes, doctors can make mistakes too, which is why it is good to get a second informed opinion before deciding on a treatment plan. You might also mention that we all react to medicines differently - even though we may share the same disease, not all of us follow the same treatment plan. If a medicine works well (or not) for me I'm happy to share that information, but I certainly would not recommend others start using/stopping it just based on my experience.

As you may have guessed, I can be rather blunt. I'm sure you will not be so blunt, but please do be firm. Stress is one of the worst factors with GPA (if I recall correctly, there is published research showing a correlation), so your concerned friends need to know not to create unwanted stress.

[drz]

Personally, I never take advice on medication from anyone without a medical degree (and, no, osteopaths and chiropractors are not medical people). With friends and loved ones, I would tell them upfront that I need their support but not their advice on medical matters. Tell them you hear their concerns and you will follow up with your doctors as you choose. Yes, doctors can make mistakes too, which is why it is good to get a second informed opinion before deciding on a treatment plan. You might also mention that we all react to medicines differently - even though we may share the same disease, not all of us follow the same treatment plan. If a medicine works well (or not) for me I'm happy to share that information, but I certainly would not recommend others start using/stopping it just based on my experience.

As you may have guessed, I can be rather blunt. I'm sure you will not be so blunt, but please do be firm. Stress is one of the worst factors with GPA (if I recall correctly, there is published research showing a correlation), so your concerned friends need to know not to create unwanted stress.

Osteopaths used to be much like Chiropractors but their training has evolved so today there is usually little difference between the training of an D.O and MDs except they have a little better understanding and appreciation of holistic medicine and treatment. Today both often practice side by side in the same clinics in our area in all areas of specialty too.

[windchime]

I think it is sensible to be wary of the medication we take as there is no denying it is toxic (see my other thread!) and I can understand your friends concerns as I have them too. As I understand it, the treatment is the only option right now and it IS life saving, BUT long term the chances of certain cancers and other issues are greatly increased.

My thoughts on it are, take it but work towards getting off it as soon as possible in consultation with your doctor.

It's my belief that we draw to us that which we fear. This is because we dwell on it and it becomes our reality. I personally prefer not to dwell on the toxic effects of the drugs we take and concentrate on the benefits. Being aware is okay and doing research is okay, but fighting the fact that the meds are necessary is fearful. As Max said we need less stress not more. Just my two cents worth.

[MCC]

It's my belief that we draw to us that which we fear. This is because we dwell on it and it becomes our reality. I personally prefer not to dwell on the toxic effects of the drugs we take and concentrate on the benefits. Being aware is okay and doing research is okay, but fighting the fact that the meds are necessary is fearful. As Max said we need less stress not more. Just my two cents worth.

Where did I say that I was fighting the fact that meds are necessary? I said the opposite.

I don't agree with you personally, being wary and mindful does not increase your chances of the drugs having a toxic effect.
I do agree that we shouldn't be stressed about it though.