It just keeps on giving

**greenjanet** · 08-15-2012, 03:49 PM

happy holiday

**mishb** · 08-15-2012, 09:01 PM

Thanks Janet,
Not going until November but at least the rheumy has things under control for me now instead of later.

**skipper** · 08-15-2012, 11:46 PM

Hi everyone, I am reducing pred now as well and will start the half next week. What reactions do you have with that amount. I read that the body can react - do you have suggestions? I have been on the cocktail for six months now and it is the past few weeks that I seem to have had the reactions I expected in the beginning. Hair loss, nausea and diarrhea. I shold be off the oral chemo by the end of the month but the reducing period seems to be causing me more discomfort. I am really tired but on the plus side my energy is better when I'm not tired and my joints are much better. Doctor never seems to know what is going on with me. Weird, vivid, scary dreams too. Any ideas or have you experienced any of this. He says there is no sign of Wegeners but I still don't feel quite right. Skipper

**Sangye** · 08-16-2012, 03:16 AM

Skipper, some or all of those symptoms may be due to side effects of pred along with depletion from the chemo. I felt worse every month I was on ctx originally. If your energy is returning and your joint pain isn't, you're probably doing well Wegs-wise.

**skipper** · 08-16-2012, 05:58 AM

Thank you. I went on a long road trip yesterday with a friend to her doctor in another city and today I have slept most of the morning. Just cannot get going and feel depressed. There are days like that and I dread them but just go with the flow I guess. I don't like to think others have the same symptoms but it helps not to be alone. My friends don't get it. My kidney level is at 23% and family doctor always reminds me how serious that is. Not hopeful at all but that's the way he is. Skipper

**mishb** · 12-10-2012, 10:27 PM

Arrghh, had my rheumy appointment this morning and got to see the lovely, charming (not) Mr. Insensitive.......my wonderful doc is on holidays. As soon as I saw him, my head said NOooo

I will back up a little bit though........we came back from our holiday last Wednesday......our wonderful holiday.
12 days in the USA
3 days(2 nights) in Vegas and the rest in LA.

All precautions were taken for the trip - surgical face masks in the planes, flight socks, nasal sprays, emergency medication plan from the doc's, and between my mother and myself, a massive first aid kit that covered all possible conditions......including vicks, cough mixture, anti inflammatories, tension bandages, gastro stop, sick bags, bandaids, cold and flu tablets, a collapseable walking stick and even a sewing kit etc etc etc.

Out of 10 of us - 2 of the men got the flu, 1 lady got gastro, a couple of the kids had stomach pains (too much food probably) .......and me, nothing. It was wonderful.

We certainly didn't have enough time in Vegas but wow, walked our feet off. Early morning and late nights, Disneyland, Universal Studio's, SanDiego Seaworld ......walk, walk, walk. No blisters and only one blood nose.......yep, it was wonderful.

And then the joy was broken today when I saw and heard the voice of Mr. Insensitive.

Was a fairly good visit though. The blood tests I had, just before going on holidays, apparently, came back (for the first time in three years) with all results within normal range.....yay.

So he says, how would you feel about reducing the pred? How long have you been at 5mg now?
Of course I want to reduce it I said, I would dearly love to be off it completely. I have been at 5mg for a year.
He said that they also want me off it completely, and when I am off the pred then we can think about reducing the plaquenil (still on 200mg) but doesn't think the MTX will be reduced for some time (if at all).......oh well, two out of three ain't bad.

So, he goes on to say, here is a script for 1mg pred tablets. Reduce to 4mg and then if you are comfortable with that, go down to 3mg and then if still comfortable, cut your 5mgs in half and go to 2.5mg but don't drop any lower than that until we see you again........and we don't think we need to see you again until June next year. I will write to your GP and tell them that you are now under their care and if they have any issues, they can contact us.

I left there a bit stumped......last time I reduced from 10mg to 5mg, I was given a plan......10mg one day, 7.5mg for two days, back to 10mg etc for weeks and then the same for 7.5mg to 5mg.....overall it took a couple of months to get down to the 5mg. Now he just says, drop to 4 then 3 then 2.5.....no reduction plan, no nothing.

Does this seem correct? Should I take it slow? I think I would prefer to take it slow.....it's a little scary.
How should I work this?

I would really appreciate some thoughts
Thankyou

rif · 12-11-2012, 01:41 AM

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

**Pete** · 12-11-2012, 02:15 AM

Hi Michelle,

glad you had a fun and healthy trip to the USA.

Too bad about the experience with Dr Insensitive. You might want to have a conversation with your preferred rheumy about him. Stick to the specifics about his care that bother you.

As for your pred taper, slower is better. I've been at 5 mg for a week. I'm going to hold there until after the holidays and then drop to 4 for a month. I see my rheumy at the end of January and will discuss further taper then.

Good luck!

**BrianR** · 12-11-2012, 02:20 AM

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!