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View Full Version : Prednisone - how to tell when to reduce your dose



ScreaminMeanie
02-04-2011, 10:58 AM
I started tapering pred 15 days ago from the 5 mg I'd been on for about 6 weeks, after an unsuccesful attempt to reduce from 5 to 2.5 mg back in November. The first day I went to 4 (as doc suggested), but I felt awful from about noon on. I went back up to 4.5 mg the next day and have been there ever since. This week, for the first time, I actually had three days in a row where I felt good, not just okay! I figured that would be a good time for me to drop the dose again, so I started today on 4 mg. So far, so good!

Does anyone have any type of signs or benchmarks that they use when tapering pred? My doc said I could do it however I liked, as long as I didn't drop faster than 1 mg/month.

Sangye
02-04-2011, 11:54 AM
I get sudden afternoon sleepiness if I taper too fast. It's like someone has given me anaesthetic.

If you've gone too low, the key is increasing the dose quickly (within 2-3 days maximum). It's good to sit at a dose until you feel very good there, then drop a bit more.

Wee Gerry
02-05-2011, 03:03 AM
Following a weekend spent in hospital with respiratory problems my prednisilone was increased rapidly. November 15th 80mg daily, November 29th 60mg daily, December 22nd 40mg daily, January 17th 30mg daily,January 31st 20mg daily. This is the 3rd time I have been down as low as 20mg, when I go lower all the pains return but I have not had any problems lowering the prednisilone until I reach 20mg. I am seeing my my Consultant next week and I will be asking for a more gradual reduction than previous. What reductions have you had and over what time scale, it may help me when I meet him.

Sangye
02-05-2011, 03:14 AM
That's a typical taper from 80mg to 20mg. You can't stay on the ultra-high doses for longer without damage. Once you get to 20mg you need to slow down a bit. For example you can't go from 20mg to 10mg in one jump. Usually you go from 20mg to 10mg slowly, then 10mg to 5 mg even slower, and 5mg to 0mg very slowly.

If you're having Wegs symptoms once you get below 20mg pred, it sounds like the main immunosuppressant isn't controlling the Wegs as it should. That's exactly what happened to me when I was first dx'ed and treated with ctx and pred, but my rheumy was so lousy he ignored it and told me to keep tapering off pred. For the next 2.5 years I had active disease that was barely contained by cellcept. It was miserable.

Also, it's normal to get some joint pain when tapering pred. The way to differentiate it from Wegs joint pain is that pred pain goes away after a few days of a new dose. Wegs pain persists or gets worse.

ScreaminMeanie
02-05-2011, 03:41 AM
Also, it's normal to get some joint pain when tapering pred. The way to differentiate it from Wegs joint pain is that pred pain goes away after a few days of a new dose. Wegs pain persists or gets worse.

As obvious as this seems, it's not something I'd thought about! Thanks for turning on a light bulb for me!

Sangye
02-05-2011, 03:43 AM
I don't think any of us figured that out for ourselves. :wink1:

NicShaf
02-05-2011, 04:45 AM
Are any other Wegs symptoms common in the first few days of tapering down on Preds? I just started going from 60mg to 50mg per day, and I have noticed my nasal symptoms and some slight chest pain I was having have gotten a little worse, has anyone else experienced anything like this? I started tapering Tuesday morning.

elephant
02-05-2011, 05:51 AM
You need to rule out why you are having chest pain/ nasal symptoms. Call you doctor now if your having chest pain. It could be heart trouble, infection, WG....ect

Sangye
02-05-2011, 07:34 AM
Nicole, I agree with Elephant. Nasal symptoms are no big deal unless they get worse, but chest pain can't wait.

NicShaf
02-05-2011, 07:46 AM
I've had this pain for about 3 weeks now. I've seen my GP and Rheumy since. My GP seemed concerned at first, but she took a chest x-ray and said it looked clear, she sent it to my pulmonary to take a look. I saw my Rheumy this past Monday and showed him exactly where the pain was, and he seemed unconcerned...I have been concerned with it for weeks, and they both made me feel like I was over reacting, now I'm second guessing. I will send all my docs an email and see if I can get in asap...I'm supposed to see my pulmonary doc on Monday morning too.

Sangye
02-05-2011, 07:48 AM
Nicole, make sure they know Weggies are 23% more likely to get blood clots. (Famous "WeCLOT" study) My lungs were packed with clots and no one believed me, either.

drz
02-05-2011, 07:57 AM
Nicole, I agree with Elephant. Nasal symptoms are no big deal unless they get worse, but chest pain can't wait.


How many people get rid of all their nasal symptoms? That was my first symptom and expect it will be one of the last ones to go if I get into a remission.

Chest pains were always considered a big deal by my doctors and I have been checked out for possible or probably heart attacks at least two dozen times or other things that might cause it.

I agree joint pains can come and go as prednisone is reduced and the pain from this is generally much milder than what i had immediately before diagnosis.

NicShaf
02-05-2011, 08:00 AM
Do the pains from clots come and go? This isn't a constant pain, it just appears sometimes and then disappears just as mysteriously. Sorry to ask so many questions and treat you like my personal doctor, I would just like to know what to tell my doc, and what to ask questions about...WG is a pain...literally and physically:)... the symptoms and everything are so variable and all over the place, it seems like every time I think I can manage, something new pops up...

Sangye
02-05-2011, 11:55 AM
Yeah, I know what you mean! Pain from clots can be constant or on/off. I actually had little to no chest pain even when my lungs were filled with clots. (I'd had severe pain in both calves for 3 weeks, though)

Where is your chest pain and how would you describe it (eg toothache, stabbing)?

NicShaf
02-05-2011, 12:30 PM
it is on my left side, which was why I have seen my two docs, it concerned me to be on my left. The pain is near my underarm/ shoulder, and sometimes is under my arm kindof in my rib cage on my side, and it started feeling wierd in the front, but it's not really a pain there yet. It has been pretty mild, but occasionally it feels like a sharp pain.
I went back through my notes from the last few weeks, and it looks like it gets worse toward the end of the week. I moved my phone to the right side of my desk this week in case that was causing it, but I can't tell yet if it helped.

Sangye
02-05-2011, 02:08 PM
Have your docs done an echocardiogram? Wegs can cause heart involvement--not common, but damage is silent and can be fatal. An annual echo is routine for any Weggie, with or without chest symptoms.

drz
02-06-2011, 06:22 AM
Have your docs done an echocardiogram? Wegs can cause heart involvement--not common, but damage is silent and can be fatal. An annual echo is routine for any Weggie, with or without chest symptoms.

I remember when my doctors told me about my risk of silent heart attack, both from my diabetes neuropathy and the Wegener's disease, it really raised my stress level for a few days. Fortunately those high risk things that will kill us are rare but if Wegener's attacks the liver, brain, heart or autonomic nervous system that controls vital functions, the prognosis gets real poor quick.

Does anyone know about a case that had such a complication?

Nicole have they done the usual X-rays, ultrasound, MRI etc to see if there is any problem they can identify?

NicShaf
02-06-2011, 09:26 AM
I had an xray done about two week ago, and everything looked clear I was told. I am going to bring up an EKG, ultrasound and MRI when I see my Pulmonary doctor on Monday morning.

I had read about the risk of heart attack, and I had also read about some kind of rare inflammation on the lining of the heart that can be caused by cytoxan...I read this on WebMD, but it didn't go into detail. Being that I just started my treatment a couple weeks ago, I think I've been a little extra paranoid about every little pain or feeling I have. But my Rheumy seemed to think it was just a weird pain I was having when I talked to him last Monday. My Pulmonary doctor is really good, and he never treats me like I'm over reacting, so I'll feel better after talking to him on Monday, I trust him to take the precautions listed above.

Sangye
02-06-2011, 09:39 AM
drz, we lost a member of this group last year due to Wegs involvement in the heart. He didn't know he had it.

Nicole, ctx can cause heart or lung problems but I'm talking about direct Wegs involvement damaging the heart. The diagnostic test of choice is the echocardiogram. I'm glad you have a doc who listens to you and can't wait for you to get a Wegs specialist.

vdub
02-06-2011, 02:10 PM
How many people get rid of all their nasal symptoms?
I often get confused on what has transpired and when, I should keep a journal.

My wegs started with nasal/sinus issues about 15 months ago (Nov '09) and continued for 6 months until the brain surgery.

I was on very large doses of steroids after my pit was removed 9 months ago in April 2010 and I didn't have any problems with sinuses until maybe Oct 2010 and then they became a problem.

In Nov 2010, my ENT did a simple operation to basically open up my sinus channels to get more air to them. I had really mixed emotions as to whether it would be a good thing to do or not. It's been 3 months now and I must say I am glad that I had the surgery. My sinuses have never been better. However, the results wouldn't necessarily be the same for anyone else.

My full story can be found on Cindy's web site (http://reachingbeyondtheclouds.com/the-disease/weggie-stories/) (VW).

Sangye
02-06-2011, 02:18 PM
I've kept a daily journal for almost a year and wish I'd been doing it all along. I make a brief AM and PM note, list supplements and drug dosages and activity for the day (eg exercise or exertion like grocery shopping). I made a table in Word and just fill it in. It's incredibly useful to spot trends and keep track of dates. I seem to have lost all sense of time and can't remember if a symptom began 3 weeks ago or 3 months ago. Wish I were kidding about that.

vdub
02-06-2011, 02:41 PM
Same.... My sense of time is also gone. I can't believe that it has now been almost 3 years since all this started. Nearly a year since the pit checked out and headed south on a oneway ticket.

Unfortunately, my memory is also somewhat muddled -- not only from 3 years ago, but from just 5 minutes ago. If it wasn't for my pill minder, anal organization, and paying attention to detail I could easily have either over-dosed or under-dosed by now and almost did on a couple of occasions. I'm on from 6 to 8 pills, 1 injection, 1 nasal spray, and 1 patch at various times throughout the day. Big hassle. I work very hard to work with the docs to keep pills, etc at just three times per day.

The journal idea is terrific and I'm thinking it's almost a 'must do'. I need to ponder how I could do it that would best fit my needs. Maybe something in excel so it could be graphed. On the other hand, that might be too complex -- maybe just something simple.

pberggren1
02-06-2011, 06:07 PM
drz, we lost a member of this group last year due to Wegs involvement in the heart. He didn't know he had it.

Nicole, ctx can cause heart or lung problems but I'm talking about direct Wegs involvement damaging the heart. The diagnostic test of choice is the echocardiogram. I'm glad you have a doc who listens to you and can't wait for you to get a Wegs specialist.

Sangye, are you refering to Mark? If so Dr. Specks said he looked at his autopsy report and did not think that the Wegs caused his heart to turn to mush like that.

Sangye
02-07-2011, 12:58 AM
I forgot that you updated us with that info, Phil. Thanks for reminding me! I'll probably make the same mistake again so I hope you remind me again... :blushing: