disease or side effect

[ingemlb]

I had a bit of a depressing day being in communication with people I respect highly and who obviously want to help but have only now cottoned onto what is happening in regards to my treatment. They are anti-steroids and been trying to convince me that this is not the way to go however not coming up with any alternatives either.

When the first message arrived at 3am I should have turned off the phone but decided to read it and had to swallow a valium before replying. It has steadily been dripping messages since then.

One of the recurring themes is the side effects of the toxic drugs I am on may kill me faster than the disease or do permanent irreversible damage. I managed to convince them that this is not the case as wegener's can get nasty very fast and told them I was in contact with a group of people who are doing ok due to the toxic drugs and going into remission etc etc. One reply was it's a pity I can't communicate with all those who died due to the treatment. That was a bit below the belt but ... the person is simply concerned so I won't get any madder than I am.

I thought I had put it all out of my mind but then decided maybe to start this thread and get some feedback. How can we distinguish we are suffering from the disease vs side effects of the drugs? When is a flare a flare and not a side effect? How many here have developed irreversible side effects caused not by Wegener's but by the drugs?

It sort of derailed me a bit but at the end of the day none of the discussions brought forth any alternatives so ... it was counterproductive and I need to put it behind me I guess. One good bit of advice was to keep a close eye on all my organs well I guess I am doing that in any case.

Would appreciate your feedback :)

[renidrag]

I have been in drug free remission for almost four years. It was the medications I took that put me there. There will always be a "risk/ reward" factor taking any medication. The same can be said about our specific diets. Our resident guru hopefully will see this thread and opine on the route she took, and the medications she finally had to take and how the holistic remedies did not work with WG.
Dale

[windchime]

Holistic healing methods are great, however, slower than allopathic medicine so they're not always appropriate for every disease. In Wegs you have to move fast to knock it down, you don't have time to wait. Waiting could kill you. That doesn't mean they can't be used along side of the toxic drugs thus allowing you to get off the drugs faster.

Since wegs is a vasculitic disease it needs the powerful anti-inflammatory effects of pred. or any of it's cousins. Do I like taking it, no, but it has made me feel better.

[mishb]

Our resident guru hopefully will see this thread and opine on the route she took, and the medications she finally had to take and how the holistic remedies did not work with WG.
Dale

For those who are new to the forum, Dale is speaking of Sangye.
Sangye is a Buddhist nun and was also a practicing chiropractor until she became to sick to work anymore.
Sangye tried to treat herself holistically and from her words - the treatment nearly killed her.

I personally would hate to think what state I would be in without the medications.
Its not just medications/drugs for WG that can cause other problems - as you know, I took simple old multi vitamins and they nearly killed my liver.
Gosh even fruits and some vegetables kill my joints :crying:

Am I sorry to say that 'Steriods' are my friends.

I'm sorry that your friends, one - kept you up so late knowing how sick you are; and two - spoke of something that they obviously don't have much knowledge on, being WG/GPA and also the need for such medications.

[lag713]

I wish I couldn't relate with what you experienced but I can on many levels. Most people don't know what GPA is, what the outlook is like, what treatment options are available, or how it may be affecting you emotionally. I'm sure that they care about you which is why they don't want you to experience damage from the medication. They can't see your sickness so they may have trouble understanding that the drugs keep you from being damaged.

For what it is worth, here is my advice:

1. Don't let others take away your resources (spoons :rolleyes1:). You don't have as many resources as you need. Don't let them keep you up late and stress you out. Create a rule for yourself that you will stop responding after a certain time. Turn off your phone before bedtime. Don't check e-mail or messages. Get yourself into a restful and relaxing mindset. Restore those resources!

2. You may respect these people because of other matters but you don't need to respect their ill-informed but well-meaning opinion in this instance. Try to explain what you know so they can be better informed or point them to a resource for more information. Most people want to give free advice (or rather unappreciated opinions) but don't let them try to convince you against a treatment that you and your team of medical professionals have decided is best for you. Your friends don't have medical degrees with a specialization in vasculitis do they? :wink1:

3. If you are feeling unsure about your treatment because of the toxicity of the drugs, etc. then discuss those feelings with your doctor. I'm sure that your doc will want to be sure that the benefits outweigh the risks. If you don't feel comfortable talking to your doc then it may be worth it to look for one that will discuss these concerns with you.

4. Don't let anyone try to scare or bully you into doing something (treatment or otherwise). "It's a pity you can't communicate with all those who died due to the treatment" - that person is a bad person for saying something so offensive and insensitive. He or she doesn't understand GPA or people in general. If he or she did, then he or she wouldn't say something so cruel. *That comment really upset me personally. I can't imagine how difficult it was to receive it.

5. If they can't provide alternatives and are only nay-saying then I would tell them that you would appreciate it if they would be supportive of your treatment and explain that you are open to *considering* other treatments after discussing options with your doctor.

If they're still being rude... I would probably use language that is inappropriate for this forum...

[lag713]

Ack! I forgot to respond to your actual questions. My answers may not be terribly helpful as I'm only taking mtx.

I don't have any irreversible damage from GPA (caught early) or mtx (not super troublesome). I did have some hair loss but I started taking leucovorin to help counteract the negative effects of mtx.

Your doctor should be able to help tease apart what is a side effect of the drug vs. the disease. I generally have everything attributed to the disease. Although, my rheumy always tries to rule out other causes for issues instead of just blaming GPA which is nice but involves going to many specialist to just say that I look fine (cardiologist, allergist, etc.).

[annekat]

Inge, the people who say these things are ignorant. One can't really blame them, they think they are knowledgeable and are trying to help, and may be trying to protect you from what they think is the medical community's over-reliance on toxic drugs. But would they say that to a cancer patient, that they should not take chemo because it is so toxic? I know how difficult it is, as I always want to argue with these people, and it is usually in a setting that is inappropriate in the first place, such as where I'm trying to do business with the public. The trick, and it is tricky, is to learn to shut off these conversations, nip them in the bud, and not become engaged or sucked into them. Easier said than done.

Some people think our "steroids" are the same thing athletes take to improve their performance and might need to be informed that prednisone is a different form of steroid. I need to look this up (again!) to be able to explain the differences.

[ingemlb]

Thank you so much for your support, feedback and encouragement. I must say I was rather shattered yesterday but I was also rather ill. Some kind of cold is trying to get a hold of me. I had a few attacks of stomach spasms not sure if the Celebrax is to blame but I have these from time to time most likely connected to the ulcers however they respond well to Buscopan (anti spasmodic) and Valium which also then helped calm me down again. I assume its the state of my health which made me react so badly to the comments.

In defence of those leaving comments yesterday. It was on another online Forum I belong to and hence time of night/day is not an issue as its a global forum and usually I ignore any messages when I am sleeping. My phone is on silent. However I woke up restless and when I saw who left the comment decided I needed to read it or wouldn't be able to sleep anyway as I had been expecting some comments from that source for a few months :) He actually said nothing I shouldn't have expected and did admit he didn't know Wegener's. He should have taken the time to look it up before saying what he did. I know it was meant out of concern. He is normally on top of everything medical being in that field himself. Another person who also commented I apparently misunderstood her suggestion so got upset for no reason. Anyway I have now posted in the same forum a video thread about Wegener's so hopefully it will bring them up to date. I had others who were very supportive in their posts.

But yes it was unfortunate. I should not have bothered reading it in the middle of the night. Should not have taken it so serious either as I should have known what the opinions would be and yes it was unfair to say some of the things that were said.

Thanks all for restoring my hope and faith in the treatment.

Anyway today I have other issues. Can't stop coughing, very tired, thinking if this doesn't get better quickly may need to go to the doc :(

[windchime]

Hope you feel better soon Inge. :hug2:

[mishb]

Everyone is entitled to an opinion, I guess :unsure:
It is up to us to weed out the good from the bad

Take care of yourself and get to the doc if things get worse. :hug2:

[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.