disease or side effect

**ingemlb** · 05-06-2014, 09:04 PM

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** · 05-06-2014, 09:53 PM

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** · 05-06-2014, 11:06 PM

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** · 05-07-2014, 12:04 AM

Originally Posted by renidrag

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

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** · 05-07-2014, 03:03 AM

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

). 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?

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** · 05-07-2014, 03:08 AM

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** · 05-07-2014, 03:57 AM

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** · 05-07-2014, 01:49 PM

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