PDA

View Full Version : Suggestions -how to tapper preds from 10mg



DEE
04-03-2011, 01:06 AM
Hi Guys
Now on 11mg -10mg alternative days just cant make my mind up were to go to after ten .
Hope to get to 8- 7 1/2mg is my next wg consult goal , depending on how my body reacts to the change. Both wg consult and doc said to ring if I need help but i thought my first port of call is you guys as some of you have been there ,done that .
Having bloods done for infection markers ever three weeks as some still not in normal range yet
DEE x :confused1:

DEE
04-03-2011, 01:08 AM
ps Next goal is about ten weeks maybe !!

Sangye
04-03-2011, 02:27 AM
Hi Dee, how are you feeling on that new dose?

stikker
04-03-2011, 02:28 AM
I have no answers for you. I also look forward to the replies. I go from 12.5 to 10 today. After that I don't know how slow to go either.
I got to 7.5 once in the 2 years I've been sick. 5mg hurt. I was so afraid of going back to that initial level of pain that I panicked and went back up. Now I see that every time I dropped by 5 mg I hurt for about 5 days. In hindsight, I would have sucked it up a little bit longer. I think I would have succeeded then and I have hope for it this time.

Sangye
04-03-2011, 02:31 AM
Stikker, do you mean you had pred-taper pain or Wegs pain? If it was truly pred-taper pain then yes, you need to just tough it out.

Since you've been on pred for 2 years, you might have to taper even slower now. Dr Seo told me the longer you're on it--even low doses-- the longer it takes to taper. Elephant can probably help you guys out with this. She's been doing a super-slow taper from 10mg.

stikker
04-03-2011, 02:43 AM
I don't know how to tell the difference between weg pain and pred pain. To me it feels the same. Muscle pain. Like I said I just reacted and said I'm not going there, soI upped my dose and stayed there. This time I am determined to succeed. I have been on it WAYYYY to long.

DEE
04-03-2011, 02:50 AM
Hi Dee, how are you feeling on that new dose?
Hi Sangye
Not to bad just abit worried about pulling the muscle ? whatever in left thigh the moment i start to tapper. Alarm bells ring and say GO slow !!
tried to stay on 10 mg last time and joint pain ans swelling returned and sinus etc played up .
As far as i understand wg consult not in a rush to get me off them he just wants me to get them lower for now as i have been on them for so long.
Like you i've had four yrs uphill struggle I dont want to slip down again
Was really sleepy when first lowered but leveled sp out now. water retention alittle better
and i been watching what i eat this week DEE x

Daggar
04-03-2011, 03:02 AM
Trying to gain knowledge on the pred tapering now so bare with me if I ask some odd questions.

Is there any difference between the WG muscle pain and the pred tapering pain? When you say "you increase the pred"... how much do you mean and for how long?

stikker
04-03-2011, 03:05 AM
Daggar, if that was addressed to me, I went back to my previous dose 7.5 mg and stayed there a long time, until I flared and went back up to 40.

Sangye
04-03-2011, 03:08 AM
Daggar, Wegs joint pain and pred-tapering pain can be easily confused. Both can be quite severe. For me, they feel completely different. Others can't seem to tell them apart--especially people who didn't have severe Wegs joint pain before starting treatment. Wegs joint pain means the disease is still quite active and you shouldn't continue tapering the pred. Pred-induced pain doesn't mean anything-- just the body's response to losing the hit of cortisone-- and it's safe to continue tapering.

The best way to tell them apart is that pred-pain will disappear in 2-3 days on the new dose. Wegs pain won't.

delorisdoe
04-03-2011, 03:12 AM
I also found that prednisone pain was an all over pain and fairly constant-i could rely on that hapening. wg pain for me is one knee one knee the next, some wrist action, an ankle swell. some times all the above :predrage:
leigh

Sangye
04-03-2011, 03:16 AM
For me the pred pain is sometimes an all over pain, but often it's one joint and then another, just like Wegs. Wegs also give me a general, severe stiffness in one joint or all over, but I don't get that with pred. I was surprised at how severe the pred pain could be, though. Whew!

Jack
04-03-2011, 03:26 AM
Some Wegener's symptoms are easy to differentiate from Pred withdrawal and they are often the symptoms that you first experienced with the disease. For instance, nose and sinus issues, skin eruptions, ear problems, red eyes - as far as I'm aware are not Pred symptoms. It is mainly the joint pain mainly that can cause confusion.

stikker
04-03-2011, 03:36 AM
My symptoms were muscle pains and mild(symtomless}kidney problems. The pain and exhaustion were the only symptom I had. When I relapsed I got pains back, increased heaing loss (hard to monitor for yourself) and mouth sores with no change in medication. That was determined to be a flare.

DEE
04-03-2011, 04:13 AM
Guys its not the pain side that bothers me so much its the actual amount of preds eg 1mg -2.5mg etc at a time,to lower
wg consult says its alright to added an extra mg for a few days if needed
last time putting an extra 2mg back and going slower seems to be working at this stage
Its just after 10mg my mind cant figure out , maybe its the fear of going backwards :mellow:

Jack
04-03-2011, 04:55 AM
I would be thinking in terms of 1mg reduction every two weeks down to 5 and then 1mg every month after that, but others will have their own ideas based upon their own personal experience. You should be prepared to step back up by a few mg if things start to go wrong rather than letting them develop into a bigger problem. Some people also swear by dropping by missing out days, but I could not tolerate that since I get adverse reactions if I am even late taking my pills.

DEE
04-03-2011, 05:36 AM
Thanks Jack like you I cant miss days ,tried it once I liked the idea my body didnt . Think I will give the 1mg every two weeks a go .Going back baby steps ok if need be . Thanks again for all your help DEE x

freakyschizogirl
04-03-2011, 06:07 AM
So interested reading everyone's experiences with telling the pred pain from the wegs pain. My arthritic mum has been on prednisolone for over a year, if not two or 3 by now, and got down to 10mg. She seemed quite stable there and tapered down alternating days for a month from 10 to 7.5mg with some rheumatoid pain coming through. She stayed on 7.5 for a month and then tapered down to 5. On 5 it was awful, like the old days before the pred, so much pain, she slept most of the days and worst of all we could hear her crying whist trying to turn in the night. Suffice to say i persuaded her to go back up to 7.5 but she jumped to 10mg cos she said she really needed it. Its nice to see her more active again and not in pain.

Wondering what the best taper method would be for her. She is so keen to get off the pred, as i am too. Kinda nice to have a tapering buddy in one house but thats also a lot of pred rage! lol. Also concerned as her arthritis nurse said all her inflammation markers had really gone down so she should now be feeling the benefit but she really isnt. :sad:

Daggar
04-03-2011, 06:08 AM
Those "mild symptomless kidney problems" are what would be of greatest concern.... hopefully they'll be increasing lab work during the early transition stage to be on top of any issues.

Holly's kidney problems were silent for the most part up until "serious"...

Is there a level of prednisone they hold to while they begin transition from cytoxan to a maintenance drug?

drz
04-03-2011, 06:20 AM
I have been tapering and was at 10 about two or three months ago and went to nine a month ago. I had some troubles this month and had to add some nasal spray steroid to get the bleeding in nose to stop. The goal for me was to go down 1 mg every month but this will all be reviewed at next appointment next week and I will see what the new plan is then. My ANCA scores are still negative, but inflammation markers went up considerable when I developed sinus, ear, and bronchitis infections. The key is to go slow and it depends greatly on high your max steroid usage was and how long you were on it. I have been told that with my history my chances of getting off prednisone entirely might be rather slim but the plan is to keep trying and see how low I can go and still feel OK?

delorisdoe
04-03-2011, 07:27 AM
wow, when i read all of this i realise how crazy i was to go about my taper the way I did...I had just had it i guess. 2.5 years of cytoxan and prednisone.

elephant
04-03-2011, 10:23 AM
I am going very slow on the prednisone taper. My Rhuemy wants me to continue to wean off it. I am on 4 mg right now. I will go to 3 1/2 mg in a couple of weeks. I am tapering 1/2 mg every 4-6 weeks depending how I feel. It is harder to wean during the spring because of allergy season and if you have sinus involvement it can be confusing. Is it the WG or the pollen?? If your sinuses are acting up you might just want to stay on prednisone a little longer. Of course ask your Doctor or ENT.

Terri
04-03-2011, 11:19 AM
I haven't done well trying to go from 10 to 7.5 and now that I am on this 12 day pk which is 60 for 4 days, then you drop to 40 for 4 days and then 20 for 4 days .......I don't know how this will be????

Sangye
04-03-2011, 11:50 AM
Terri, that should be fine. You're not on the higher doses long enough for your body to get used to them.

Elephant, I am SO happy that you're down to 4 mg!! Woot! :w00t:

elephant
04-03-2011, 01:31 PM
Thanks Sangye, lets hope that I can continue a little further. Cartwheels at 3 mg!

Sangye
04-03-2011, 11:50 PM
Okay, but I think I'm gonna let you do the cartwheels. I'll just watch and clap. :wink1::laugh:

jola57
04-05-2011, 03:57 PM
Tell me how it goes Elephant, everytime I try to go lower than 4 my fingers stifen with pain and the coughing starts. Go Elephant Go

Sangye
04-06-2011, 12:43 AM
Jolanta, how do you taper once you get below 4mg?

It just might not be possible for you to get below it. At my last visit I asked Dr Seo when I could try tapering from 2.5mg and he said "I think you should just surrender gracefully." LOL

delorisdoe
04-06-2011, 01:00 AM
what could have happend to me for stopping i mean tapering prednisone the way I did?

freakyschizogirl
04-06-2011, 04:36 AM
It just might not be possible for you to get below it. At my last visit I asked Dr Seo when I could try tapering from 2.5mg and he said "I think you should just surrender gracefully." LOL
Nice to have a doc with a sense of humour! :biggrin1:

I'm not liking the taper from 7.5 to 5mg. Lost all the endurance i ever had - feel fat and frumpy and cant walk half as far as i used to cos i just dont have the energy :sad:
I've even given up Zumba which i really enjoyed. I didnt realised how much the pred did for me.

Really want my brain back now, i used to be able to spell and type like anyone else. Took me 3 full hours yesterday to remember the name of an old colleague! Really not like me, please tell me it will level out and i'll feel better soon :crying::confused1:

delorisdoe
04-06-2011, 04:54 AM
It will level out. I dont remember much of what you are talking about so i say give it a good 6-8 years and it will be a distant foggy memory.

Jack
04-06-2011, 05:06 AM
what could have happend to me for stopping i mean tapering prednisone the way I did?
If you stop too suddenly you can go into shock and suffer heart failure.

delorisdoe
04-06-2011, 05:13 AM
good to know...7-8 years ago when I did stop i was sick of it-and young and supid. wont do it again.

RCOSSIO
04-06-2011, 12:03 PM
Once I got to 20mg...I went down 1mg until I got to 5mg...then went to 2.5mg. I am back up to 5mg as I have been having some frequent joint pains. I did increase my Cellcept exactly one month ago but my understanding it takes time for Cellcept to start working so it can KICK the F&CK#%$ (&%$#@(&%$) weg DOG BACK TO SLEEP. :biggrin1:

RCOSSIO
04-06-2011, 12:05 PM
Or shall I say my BFF!!!!!

elephant
04-09-2011, 08:38 AM
I am at 3.5 of pred, but please don't tell Weggie.

Lightwarrior
04-09-2011, 08:43 AM
They are tapering me finally, I am on 11 and will go to 10mg on Monday. Wish me luck. I had one great day last week where I was able to walk around the unit, help with hanging drips, etc. without my scooter. Now I've been feeling yuck for the next 3 days. I have a sleep study tonight.

pberggren1
04-09-2011, 08:45 AM
I hope the sleep study goes well for you Lightwarrior and that you can continue to taper on the pred.

elephant
04-09-2011, 11:44 AM
Lightwarrior, you come a long way. Keep pushing forward.

Sangye
04-09-2011, 01:56 PM
That's great to hear, LightWarrior. I've been wondering how you were doing.

DEE
04-09-2011, 05:07 PM
Good to hear things are moving forward LightWarrior , Im going onto 10mg Monday too

Lightwarrior
04-12-2011, 01:11 AM
Dee, This will be 10mg Monday for both of us. I should be online more now. I teach online and have to teach at least one class every year to stay active. Even though teaching doesn't pay much I want to keep my opportunities open just in case I need them some day. I was exhausting myself though, working 8 to 10 hours a day and then going home and working online till midnight or later was starting to take its toll. As much as I love the interaction with my students, I'm taking a break again.

DEE
04-12-2011, 01:38 AM
HI Lightwarrior
I lowered mine from Saturday as its the day iI do my meds for the week , so far so good the only thing that seems to happen is that I get extremly tired .Sunday we went out for an hour or so and when we came back i had a headache so went to lay down for awhile about 11.30 am then I didnt wake up while 5pm .The same happened in the first few days last time i went to 10mg !
Today has not been to bad although i think I have a cold :rolleyes1: Hoping its not my sinuses playing up . Fingers crossed . Hope things work out for you DEEx will keep intouch .

Sangye
04-12-2011, 01:42 AM
Dee, I think that means you've tapered too fast. Sudden afternoon sleepiness and/or extreme fatigue means your adrenals aren't getting what they need.

I know I've asked you before-- how long did you stay at 11 mg before tapering to 10mg? You might need to stay there longer, or taper by 1/2mg.

DEE
04-12-2011, 01:51 AM
Two weeks at 11mg and a week at 11mg /10 mg alternate days .I was going to give it a couple more days a see what happens and if things get worse put it back to 10 1/2mg maybe . I dont see how im going to get to 7 1/2mg by June thats what wg consult was hoping for me to be able to do . My gp said that I know my body do what feels right for me .

Sangye
04-12-2011, 02:05 AM
The alternating day approach might not work well for you. It doesn't work at all for me.

I can tell you that last year when I accidentally tapered too quickly and got the extreme afternoon fatigue thing, I waited too long to increase the dose again. Dr Seo said you have to fix it within 2-3 days.

I suggest you don't look too far ahead. Last year I could only drop 1mg at a time from 20mg down to 10mg, but then all of a sudden I could drop to 7mg without a problem. It was slow again after that. Just take it one step at a time.

DEE
04-12-2011, 02:19 AM
Thanks Sangye .will think it through tonight and make a decsion sp in the morning . Not been the best of days sat waiting for the dentist to ring back about the care plan she was suppose to be sending me a week ago .Hubby and I are suppose to be going to discuss it with her next week !!.

Hal
04-12-2011, 03:29 AM
Dee, my Rheumatologist and my family doctor both suggested that for me to now go from 10mg to eventually 5mg, it should be done very slowly. 1mg per month, and if I feel any swelling or pain to go back up 1mg. I am doing 9mg for the month of April, 8mg for May, and so on until I hopefully reach 5mg.

I had a bone density scan done a few weeks ago, and it detected bone loss. This is apparantly one of the potential side effects of all the Prednisone I have been taking. I have also been taking calcium supplements since the get-go, but apparantly not enough to totally counteract the Prednisone. So, I now have increased risk of bone fractures to consider ... yikes. I hope I can increase my bone density over time if I can lower the Preds.

I hope your taper down is going to work out OK!

Hal.

DEE
04-12-2011, 03:37 AM
I hope your taper down is going to work out OK!

Hal.[/QUOTE]
Thanks Hal iI will keep your advice in mind DEEx

pwc51
04-12-2011, 07:18 AM
I am just starting the slow taper from 15mg to 7.5mg - Rheumy has set out a 4 month program. Hope it does not turn out to be too fast. Early days yet, currently alternating days of 15 with days of 12.5 for 3 weeks. Watch this space!

freakyschizogirl
04-12-2011, 05:58 PM
I'm down to 5mg as from today! :thumbsup:

Geoff
04-12-2011, 06:52 PM
Good Luck Sam!

Fingers crossed for a smooth flight.

DEE
04-12-2011, 07:46 PM
Great news Sam hope things go well DEEx

Sangye
04-13-2011, 01:18 AM
That's great news, Sam. Hope it continues to go well. :smile1:

Lightwarrior
04-13-2011, 02:47 AM
I'm down to 5mg as from today! :thumbsup:

YEAH!!! I hope all goes well. :hug3:

freakyschizogirl
04-13-2011, 04:11 AM
Thanks Guys, Come on Dee, wanna see ya get down too. :thumbup:

DEE
04-13-2011, 04:59 AM
Hi Sam, doing my best think i might have cracked 10 mg ,although only got two hours sleep last night but realised i took preds later yesterday and it seems to make a difference .One day at a time take care of you :thumbsup:

freakyschizogirl
04-13-2011, 10:36 PM
i will have my fingers crossed you can crack 5mg! x

DEE
04-14-2011, 01:06 AM
Thanks Sam :smile1: x

drz
04-14-2011, 11:46 AM
I am back on taper plan again. Am currently at 9 mg but will try cut to 8 next week and then drop 1 mg a month and see how low I can go. Will also try cut out steroid nasal spray for a week and see what happens. If things get worse resume usage for a week and try again.

freakyschizogirl
04-15-2011, 02:02 AM
drz do you get much relief from the steroid nasal spray, because i have one but i dont feel much difference.

drz
04-15-2011, 03:06 AM
drz do you get much relief from the steroid nasal spray, because i have one but i dont feel much difference.
It seemed to help clear up my infection and bleeding from last flare. I am trying now to stop it for a week and see what happens. right now my nasal passages are clean and clear with no bleeding, clots, or heavy mucous. If this changes in the next week I will go back on steroid spray and see if that helps. My rheumatologist told me that given my damage to my nasal area and sinuses from the Wegener's disease I will be prone to develop sinus infections which will cause Wegener's to flare up again like it did last month. He also reinforce the idea that many patients with Wegener's have residual symptoms or smoldering signs of Wegener's in the nasal area even when the Wegs is otherwise under good control. These symptoms do not mean a more aggressive treatment with CTX or RTX or plasmaparesis is warranted. If a flare is caused by an infection, then treating the infection will usually result in the Wegs decreasing again. So far that has been the case for me. My CTX or now azathioprine have been increased during flares and sometimes the prednisone has been supplement. I think the nasal spray supplement helped me last time but I hope I don't need it on going since it usage can also cause bleeding which seemed strange to me.

Jack
04-15-2011, 04:08 AM
I had repeat sinus infections until I started taking Bactrim on a daily basis.

drz
04-15-2011, 04:34 AM
I had repeat sinus infections until I started taking Bactrim on a daily basis.

I can't take Bactrim due to sulfa allergy but take the non sulfa part which is trimethoprim. This has prevented any more urinary infections but did NOT prevent my last sinus infection.

freakyschizogirl
04-15-2011, 05:01 AM
I've got the after effects of my cold, these being lingering sinus pain, particulary over my left eye and sinus pressure when leaning over etc and also excess mucus on my lungs which is taking it time to cough up.

Let me know how you get on with the steroid spray drz. I've been perscribed it before but never felt any benefit, but thought this was because i was so blocked up, now i'm not i'm still not feeling like it does anything.