How did you feel during your first treatment?

[katarzena]

I've been reading some posts on forums about people talking about not being able to walk, climb stairs, go to work etc.. How did you feel when you were diagnosed bust started on medicines?
I don't know how to explain it but I never felt ill. Before I was diagnosed my problem were nose bleeds and some joint pain. As soon as I started prednisone I felt fine. No pain at all, I do physical education, go to gym with no pain. My prednisone was really fast tapered down (maybe too fast) tapered about 16mg first month, 8 next, and now I'm on 12 mg, next week starting 8. Is that too fast? Never felt any difference in how I feel the day after I took 16mg less then the day before.

[elephant]

Katarzena, once you hit prednisone 10 mg, it really should be tapered down by 1 mg per month. Two years ago I was tapered too fast, at that time did not have a Wegeners Specialist. My Wegeners disease got worse ( big lung nodule, very tired, joint pain..) , so ask your doctor if you could take it slow.
Katarzena, I really think you are going to do great. Since you have no lung and kidney involvement, you are very lucky that is was caught early. All you have to do is be aware of the wegeners symptoms and don't put yourself in denial. If you keep on top of this disease you will fine.

[Sangye]

I think the reason you didn't feel ill is because the Wegs was just getting started. I didn't feel ill for many months either--just had joint pain that got worse and worse. It was pretty horrific joint pain, but I felt fine otherwise. By the time I was diagnosed I was almost dead and did feel seriously ill. I had immediate major complications so I felt much worse after starting treatment. The joint pain went away for a few months, but everything else went downhill.

That's how Wegs is-- highly variable from one person to the next.

[katarzena]

Thank you for replying elephant and sangye
I agree with you about tapering down too fast. I'm so grateful that I have found this forum and learned so much more about my disease. After I hit 8 mg I will taper down slowlier. My doctor truly is an amazing woman and I do really like her but I will taper slowlier, it can't do any harm right? I cannot tapper 1mg per month because of the form of the pill (there's no possible way to cut the pill and get 1mg since prednisone in croatia exist in form of 8mg) but I will try to taper 2mg per month.
Thank you for saying I will do fine and I truly do feel lucky as much as lucky a person can be with this disease. Since I was diagnosed I told myself that this disease is not going to get me. I find myself being lucky to get this and live with it rather then get something even worse (and there are so many worse diseases then this one) I've told myself that the medicinies WILL work and that I will reach a long term remission. I truly do believe in that and I think everyone should think the same way. I am aware of flare ups and if it does happen I will accept it with a smile on my face and beat it up once again. That's what keeps me going
I was wondering about something else too. My doctor never gave me calcium, magnesium or D vitamin. I wonder why? I as thinking about 2 possibiites: maybe I haven't been so long on prednisone and she thinks it still isn't neccessary (I've been on it for 3 months now) or she's not even aware of osteoporosis (which I doubt.)
I will ask her about the vitamins next time too. My mom doesn't like me asking to much questions that's probably why I feel like I'm moaning too much and rather keep my mouth shout but seriously, I think I'm the first person that should take care of myself so why not? I'd rather be boring than get something later in life that could have been prevented.
Okay enough Katarzena I always overdo everything

[Sangye]

Moms are often right, but when it comes to your health in general and Wegs in particular, her advice to stop asking questions is completely wrong. If you don't have all the info you need Wegs can turn ugly, even deadly.

There must be a smaller dose of pred than 8 mg in Croatia. Many people would need to be on less. I think you should ask again. No matter what your mom says.

[katarzena]

Yes I agree. Maybe a form of 4 mg exist? I don't know. I've been told it doesn't (but not from my doctors mouth). Yes my mom is really like that, she thinks that the doctor will think I'm annoying and has to treat me for a long time, my mom has been through so much with my disease and diagnoses so I understand her. Sometimes it feels like everyone else around me is in worse shape then I am.
I have one question for you, were you given the calcium and d vitamin? And should I ask for it?

[JanW]

Hi, Katazena -- First off, great avatar! You're a beautiful young lady!

Second, the calcium and vit d relate to bone strength. Since you are on pred, you are at higher risk of developing osteoperosis (I have it just from taking pred for asthma, which turned out to be stenosis which needed to be fixed surgically anyway). I take both daily in addition to fosamex for the osteo.

[elephant]

Talk with your physician about the calcium and vitamin D. This is my opinion, I think you should be on Calcium and vitamin D supplement.

[DEE]

ive always taken calcium and vitamin D from starting with pred '
I also so learnt from Elephany Sangye and many more to ask as many question as you need as one day it might save your life to pass on some information to doctor treating you who does not have much knowledge of wg
i was a quiet as a mouse thought the doctor know everything not any more with the help from my family and the forum i look after me now
so if i dont understand i ask or find out and new to me if i dont agree i say so
opps in danger of becoming an apprentice NAG better stop now
DEE x
ps beening a nag not a bad thing have got me through some rough periods in the last three months THANKS TO ALL THE NAGS OUT THERE!!!!!!!!!!!!!!!!

[jola57]

Katarzena, taking vit D and calcium is because of the pred working away at your bones. You want to know that you are protected, so talk to your doc and find out, I am sure she wil be glad that you are involved in helping yourself and not just do blindly what she tells you. Ask about what is the lowest pill form of prednisone that is available to you and do go very slow in tapering. Even at this early stage of the disease you can get worse very fast if you don't watch it.