Questions about relapse

[MCC]

So I have been off medication for over two years and just in the last few weeks I have started to feel unwell. My bloods are showing something is going on and I fear my doctor is going to say I need to go back on medication.

I'd like to know if anyone has recovered from a flare/relapse without going back on medication?

What can I do to help myself?? I have been trying an anti-inflammation diet and for a few days it seemed to help but now i am not sure.

Will I have to have all the treatment again, or just small dose prednisone?

I absolutely do not not not want to go back on medication, especially the prednisone.

[Dirty Don]

As I've been told, your docs, if this is a flare, will try to stop it with pred and tapering doses. Then, if that doesn't do it, they will most likely select the next most powerful drug for you. I've been 'threatened' by my docs if and when (sighs) I flare again, that will be the procedure with me going to rtx as I'm mtx now. Best to you.

[Pete]

I don't understand. Why would going back on medication be a bad thing if it makes you feel better?

[MCC]

Because the medication for Wegeners is highly toxic and damaging in itself. Just one example: your risk of bladder cancer increases x 44 with cyclophosamide. Yes I know it's lifesaving but if I can avoid taking any of it again, I will.

I was also very happy to have 'beaten' it by being off meds and ok, so I don't want to go back.

I also want a child and you can't be pregnant on some of these meds.

[MCC]

As I've been told, your docs, if this is a flare, will try to stop it with pred and tapering doses. Then, if that doesn't do it, they will most likely select the next most powerful drug for you. I've been 'threatened' by my docs if and when (sighs) I flare again, that will be the procedure with me going to rtx as I'm mtx now. Best to you.

thank you.

[Alysia]

if you are flaring, the best thing is to catch it ASAP, then you will need less meds, lower doses, and less agresive meds... the more you will wait, the harder it will be to control the wg and bring you back to remission....

[mishb]

If the doctor says meds then I would get on them.

You know first hand, and by being on this forum for many years, just what damage that nasty dog can do when he is let off the leash.

There are other options to Cyclo so I would go that way.

I will have my fingers crossed and say some prayers that your doctor doesn't think it is bad enough and that a little bit of pred will help.
I hope you feel better soon/quickly

[MCC]

Thanks for your replies. I don't think it's outrageous not to want to take the medication. I would have assumed that most of you do not like popping pills everyday - it's a reminder of being ill and there is no escaping that the drugs ARE toxic. I also would have assumed people felt that to be off it is a goal and achievement.

I'm not stupid: if my doctor tells me I need to I will go back on it. For now, I'd like to hear from people who might know about answers to my questions in terms of being proactive.

[lag713]

I understand how you feel. Your post reminded me to take my medication. Oops!

I think the best way to keep a flare at bay (before getting to a point where you require medication) is to do what helps everyone stay healthy and live a long life: good night's sleep, healthy and balanced meals, exercise, and keeping stress down. Simple stuff that we don't always do.

Also, if you want to keep cancer at bay then eat 7 or more servings of fruit and vegetables daily, seriously.
BBC News - Seven-a-day fruit and veg 'saves lives'

[lag713]

I'm sure you're familiar with options that are okay to use during pregnancy (e.g. Imuran (aka azathioprine)). Although I'm hoping to reach remission and be medication-free, I know that there are options that are more tolerable as maintenance drugs long term which could allow for healthy pregnancies and keep me from flaring. I would like to have a child but I'm waiting to go in remission first (generally better outcomes).