It just keeps on giving

[Sangye]

Michelle, your description of the first aid kit really got me laughing. We've become so complicated! LOL I'm so glad you were healthy and could enjoy your trip. And yay for normal labs!

Mr Insensitive's instruction..... The point is to go very slowly since you've been on 5 mg for so long. Dr Seo had me drop by 1 mg a month. He said I could go slower but not faster. I wasn't able to drop 1 mg at a time without problems. I tried 1/2 mg, nope. I actually had to drop by 1/4 mg at a time. I stayed at each dose until I stabilized, which took about a week. So each month I dropped 1 mg total.

I was fine until I got below 2.5 mg, then I crashed. Really wiped out, crying, weak. The Wegs dog was okay, but my adrenals weren't coming back on. Watch out for sudden afternoon sleepiness and tearfulness. If you get that, you have to increase your dose to the last level right away. It means your adrenals are not handling the lower dose yet. Stabilize at the higher dose then try again.

One year is a long time to be on 5 mg. It may take much longer to get off of it, but be patient. I still haven't been able to, but I'm on hydrocortisone and hoping for my adrenals to start playing again soon.

I don't agree that you should only be under the care of a GP or that you can go until June before being seen again. I'd say every 4 months until you've been in remission for longer. And they should still be doing very regular labs.

[Debbie C]

Michelle...Sangye said it all..I too was laughing at yr health kit,that was good,I probably wouldn't have thought about have those things.Glad you had a great time and stayed healthy. Good luck with the pred..I see my reumy in Jan,hopefully he'll get me down also. Keep us updated on how y r doing.

[drz]

When I tapered from 10 to 5 mg I also ended up going down by 1/4 mg about every 10-14 days so it was real slow. I have been at 5 now for many months and doctors plan to leave it there with Imuran maintenance meds til there is some some research to provide any guidance for change or some serious side effects develop. Many people stay on these meds for years at these dosages for various medical necessity and seem to live OK for many decades so getting off them all is not regarded as crucial for me. Trying to prevent a serious flare is and early research suggests longer periods of maintenance meds might help maintain remission of GPA. I think I just got through my last mini-flare without needing anymore additional meds than an antibiotic and nasal steroid spray. I need labs next week to confirm I am back in remission but am feeling better and nasal bleeding appears to have stopped so far.

[mishb]

Hi mishb

Seems a little odd that they are transferring you to the care of your GP, are they used to treating WG patients and performing all necessary regular tests? Worried about Mr Insensitive saying that your GP can contact him over any concerns, how will the GP know what constitutes a 'concern'? Please take care and good luck.

Rif

My GP used to be totally hopeless, never wanting to refer me to a specialist - pre diagnosis. It took her 15 months to agree.

Now she is so on top of it, it's not funny......and the hospital has kept her informed every step of the way.

She was also the one to pick up the elevated liver results in my blood tests and got me to act on it, straight away.

Couldn't say this a few years ago, but now I am comfortable with her care.

[mishb]

Hi Mish.

This is is great news that you will be reducing the pred! Marta has been very slowing reducing her pred and so far it is working out well. She has been reducing at a rate of .5 mg per month. She is now at 3 mg and ready to reduce to 2.5 mg. The way she does it is to take (for example) 5 mg one day, 4 the next then back to 5. She does this for a month and averages 4.5 mg per day. After the month is over she goes to 4 mg daily. The next month is 4 mg one day and 3 the next and so on. Her doctor is a leading vasculitis specialist and favours a very slow wean when on low dose pred.

As for putting you under the care of the GP, this would be because you must have been stable now for some time, have good blood work, are on low dose meds and have no real symptoms. If you are symptom free and your blood work continues to be good then having a GP keep an eye on you makes sense. You know better than anyone if and when any symptoms start creeping back and if that happens then you need to advise your GP and insist on getting back in to the specialist. Until then just pay attention to how you feel and lower the pred slowly.

Cheers!

Thanks Brian,

I have six months before I see the rheumatology clinic again, so I intend to take the taper very slow....the same way I did from 10mg to 5mg.
I think it will be the same as Marta's

Kind regards

[mishb]

Why didn't you ask him Michelle?

Glad to hear you are doing well and had a good holiday. I hope you have a Blessed Christmas.

Phil, he doesn't give you a chance to speak to him. He talks very very fast, tells you how it will be and that's it.

He is only a visiting rheumy, when someone from the hospital is away. He has his own practice on the outside.......pity the poor people that see him.

My lovely guru rheumy is on holidays, but I will give her a call when she gets back. She is so easy to talk to and if she wants to change anything that he has done, she will not hesitate.

Thanks Phil,

[mishb]

Michelle, your description of the first aid kit really got me laughing. We've become so complicated! LOL I'm so glad you were healthy and could enjoy your trip. And yay for normal labs!

Mr Insensitive's instruction..... The point is to go very slowly since you've been on 5 mg for so long. Dr Seo had me drop by 1 mg a month. He said I could go slower but not faster. I wasn't able to drop 1 mg at a time without problems. I tried 1/2 mg, nope. I actually had to drop by 1/4 mg at a time. I stayed at each dose until I stabilized, which took about a week. So each month I dropped 1 mg total.

I was fine until I got below 2.5 mg, then I crashed. Really wiped out, crying, weak. The Wegs dog was okay, but my adrenals weren't coming back on. Watch out for sudden afternoon sleepiness and tearfulness. If you get that, you have to increase your dose to the last level right away. It means your adrenals are not handling the lower dose yet. Stabilize at the higher dose then try again.

One year is a long time to be on 5 mg. It may take much longer to get off of it, but be patient. I still haven't been able to, but I'm on hydrocortisone and hoping for my adrenals to start playing again soon.

I don't agree that you should only be under the care of a GP or that you can go until June before being seen again. I'd say every 4 months until you've been in remission for longer. And they should still be doing very regular labs.

Thanks Sangye,
I will take it very slow......I've got a while before I see them again, whether it be 6 months or early.

Oh.....Happy Birthday Sangye, I hope you have a painfree day.

All the best

[mishb]

Michelle...Sangye said it all..I too was laughing at yr health kit,that was good,I probably wouldn't have thought about have those things.Glad you had a great time and stayed healthy. Good luck with the pred..I see my reumy in Jan,hopefully he'll get me down also. Keep us updated on how y r doing.

Thanks Deb,

Even though I had travel insurance I really didn't want to have to find a pharmacy or doctor, if I could avoid it......therefore, anything that would make life a little easier (should things have gone wrong), I was taking with me.
As it was, I doled out cold and flu tablets, cough mixture and paracetomol to others but thankfully, nothing for me.

Good luck with your appointment in Jan

[mishb]

When I tapered from 10 to 5 mg I also ended up going down by 1/4 mg about every 10-14 days so it was real slow. I have been at 5 now for many months and doctors plan to leave it there with Imuran maintenance meds til there is some some research to provide any guidance for change or some serious side effects develop. Many people stay on these meds for years at these dosages for various medical necessity and seem to live OK for many decades so getting off them all is not regarded as crucial for me. Trying to prevent a serious flare is and early research suggests longer periods of maintenance meds might help maintain remission of GPA. I think I just got through my last mini-flare without needing anymore additional meds than an antibiotic and nasal steroid spray. I need labs next week to confirm I am back in remission but am feeling better and nasal bleeding appears to have stopped so far.

drz,
It sounds strange, but pred for me was a life saver.......and I am not too fussed as to whether I get off it totally or not.
Therefore, I will be taking it slowly.

I hope your next lab results see you back in remission.