Full remmision

[Michael Bell]

Hello everyone, I just wanted to pass on my good news. I went to see my specialist on Tuesday and I am free from ANCA, he is putting me on a maintenence dose of meds and though I will still be going for three monthly checks everything is looking rosey. I am now looking forward with a little more enthusiasm to the rest of my life. Please keep me in your prayers and thoughts as I keep all of you in mine:hug3:.
Mike

[Dirty Don]

Keep at it Michael...wonderful news and welcome to my world...I've been in med remission since last summer, officially that is. It does make the world a bit brighter, but we still have WG, so never let down your guard! Best to you!

[Pete]

Congratulations, Mike!

Welcome to the medication-induced remission club. Hope everything continues to go well for you.

[Debbie C]

Yea for you Mike and all others who can't get into remission.Hope it lasts a long time. I'll pray for all of us to get thru this disease

[marylz]

So happy for you!:hug3:

[annekat]

I'm happy for you, too! But do be careful in case the dosage of maintenance drugs is a little low. In my case it was, and I had a minor flare, which responded very well to an increase in the meds. I might be in the same sort of medicated remission now but it hasn't been declared. I do feel very good most of the time. Will get bloods later this month and see what doc says. He has never used the "r" word.

[mishb]

Yay, that is wonderful news Mike.

I am so happy that so many have reached a remission, whether it be medicated or better still, not.
It certainly gives hope to all of us and a future to look forward too.

:hug3: :hug3: :hug3:

[woz]

Its always good to here news like that, I will have a small scotch for you in celebration.
Hope to get there myself shortly (touch wood).

All the best.....Woz.

[Barry Forshaw]

That's really great news! Congratulations and all the best for the future.

[Barbara N]

Well done all of you, I hope it stays that way. I am afraid I am at the opposite end of the scale. Everything is flaring. I see my good old family country doctor today to see if he canhelp me out because all of the other Droctors here just want to make me comfortable and send me home top bed. Im not the stay in bed type so I hope he can give me a bit of help today. Soon I will be with you guys, in remission.

[annekat]

Well done all of you, I hope it stays that way. I am afraid I am at the opposite end of the scale. Everything is flaring. I see my good old family country doctor today to see if he canhelp me out because all of the other Droctors here just want to make me comfortable and send me home top bed. Im not the stay in bed type so I hope he can give me a bit of help today. Soon I will be with you guys, in remission. Yes, you will, Barbara! Let us know what the good country doctor has to say.

[marylz]

Hope you get some help and feel much better!:hug3:

[Barbara N]

He was great. He put me back on a maintenance dose pf 5 mgs of pred because my hands look like they have been in boiling oil and the other doctors just give me antibiotics and creams. He said the were nmo creams that would get rid of it the only thing was to go back to pred and he knows how I feel about it but I trust him so much that if he says it is theright thing to do then I do it. so I am back on 5 mgs of pred and my hands are still bad but at least i can move my fingers and things so they are getting better. He said it was caused by my thyroid.I don't have a thyroid problem that I know about but he says that is what caused my hands tp be like that. I think it is terrible that I have to make secret appointments to see this fantastic doctor. He is so kind he does it on his time off. He said >I am in better shape that I was 3 years ago. The anemia is still a problem and my kidneys aren't functioniing as well as they should but all in all I am doing better.

[Alysia]

He was great. He put me back on a maintenance dose pf 5 mgs of pred because my hands look like they have been in boiling oil and the other doctors just give me antibiotics and creams. He said the were nmo creams that would get rid of it the only thing was to go back to pred and he knows how I feel about it but I trust him so much that if he says it is theright thing to do then I do it. so I am back on 5 mgs of pred and my hands are still bad but at least i can move my fingers and things so they are getting better. He said it was caused by my thyroid.I don't have a thyroid problem that I know about but he says that is what caused my hands tp be like that. I think it is terrible that I have to make secret appointments to see this fantastic doctor. He is so kind he does it on his time off. He said >I am in better shape that I was 3 years ago. The anemia is still a problem and my kidneys aren't functioniing as well as they should but all in all I am doing better.

Hi Barbara. I understand that you trust your doc and that he is a good doc and a good man. still Im afraid that 5mg pred is not enough. that you need something stronger. can your doc consult with wg specialist, even in another country ?

[Michael Bell]

Hi Barbara, I wish you all the best and hope remission is here for you soon
Mike

[Barbara N]

Hi Barbara. I understand that you trust your doc and that he is a good doc and a good man. still Im afraid that 5mg pred is not enough. that you need something stronger. can your doc consult with wg specialist, even in another country ?

That is the great thing. I told him about this forum and he asked me to write down all of the drugs that are helping you all and what you were taking them for and he has a friend the is a `specialist and he wants to have a conference with him. If another doctor had asked me to take pred again I would of said no because >I had 6 years of it and I couldn't stand anymore. I was a bit concerned when I read on the forum last night that someone was concerned about there creatine level going from 1 point something to 2 point something mine is almost 5. Is that really bad. I think I need a chart to tell me what the numbers of everything should be and what is too high and over the limit. It tells you on the analysis what is the normal level but it doesn't say what is too high, some numbers can go up very high anbd others just a few decimos

[drz]

That is the great thing. I told him about this forum and he asked me to write down all of the drugs that are helping you all and what you were taking them for and he has a friend the is a `specialist and he wants to have a conference with him. If another doctor had asked me to take pred again I would of said no because >I had 6 years of it and I couldn't stand anymore. I was a bit concerned when I read on the forum last night that someone was concerned about there creatine level going from 1 point something to 2 point something mine is almost 5. Is that really bad. I think I need a chart to tell me what the numbers of everything should be and what is too high and over the limit. It tells you on the analysis what is the normal level but it doesn't say what is too high, some numbers can go up very high anbd others just a few decimos

If you are using same reference point as most of us 5 is not good for creatinine. There was a web site posted here that listed all the lab tests and what they meant. You can find the reference scores listed many places on internet. I keep my lab results on my PDA so I can view them in chart form and note any patterns or trends. I get a copy of my lab results usually the same day unless they are special ones that need to be sent away and take longer.

Here is link for more info than you evr wanted on creatinine: Creatinine and Creatinine Clearance: Levels and Tests (http://www.webmd.com/a-to-z-guides/creatinine-and-creatinine-clearance)

[Debbie C]

Sorry you are feeling bad again Barbara, I hope your country doc can help. How is the horse training coming along ?

[dezire1978]

I'm happy for you, hopefully the rest of us will join you soon. With Jehovah God's help we will!
Wish you the best. I'm glad I join this, your comments are very stimulating and you don't feel like no one underestand because all of you do. :hug3:

[Barbara N]

If you are using same reference point as most of us 5 is not good for creatinine. There was a web site posted here that listed all the lab tests and what they meant. You can find the reference scores listed many places on internet. I keep my lab results on my PDA so I can view them in chart form and note any patterns or trends. I get a copy of my lab results usually the same day unless they are special ones that need to be sent away and take longer.

Here is link for more info than you evr wanted on creatinine: Creatinine and Creatinine Clearance: Levels and Tests (http://www.webmd.com/a-to-z-guides/creatinine-and-creatinine-clearance)

That was really interesting and useful but it still didn't tell me what is too high and what it mean or what to do. My country doctor made an appt for me with a kidney specialist for the end of July. After my next blood test if he thinks It would help to take a higher dose of pred, I will. I just don-t want to become a pin cushion again and have all of those biopsies and scopes etc. The test you use are exactly the same as the ones we use here, so my numbers would fit your chart.

[Mothers Favorite Son]

That is good new Michael!!! How long did it take?

[Debbie C]

Barbara, I'm glad your country dr. is coming thru for you. He seems to be just what you need. Your creatine is high the normal range should be between 0.5 - 1.1 mg, so 5 is pretty high ,I hope this kidney dr will get it back to normal for you.Let us know what he says......Take care