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View Full Version : Beware not to drop Prednisolone too much



Carol
12-11-2008, 09:05 PM
It is now the second time I have been told to drop my Prednisolone by my rheumatologist by 5mgs. Both times I have had problems with my coordination going and the optic nerve in my eye playing up. So I have decided that in future I will drop it by 2 1/2 mgs only at a time so over the six weeks before he hopes to get me down by another 5mgs I will drop it down for 3 weeks then the next 3 weeks. I was taking 20mgs so by dropping it by 5mg that's 1/4 which is obviously just too much. So other Weggies this may be an idea for you too as our bodies get so reliant on the Prednisolone don't they!!

andrew
12-11-2008, 09:07 PM
Yes, I completely agree. The last 10mg or so of Pred that I came off went down by 1mg per week. Good advice!

Rodger
12-14-2008, 07:39 AM
It seems like I'm joining the thread midway, but my rheumy was very specific about stepping down by 2.5 mg at time over a number of weeks. Of course the higher the dose the longer it will take. Fatigue was my biggest complication and he would allow me to hold at certain points so my body could catch up.

Carol
12-14-2008, 10:40 AM
:cool: Following the rheumatologist telling me to drop my Prednisolone by 5mgs and then having eye problems again(inflamation of the optic nerve - blurred vision in one eye only) I have been told by the Melbourne Eye Hospital to go back up 40mgs ....... after being on 20mg for so long I was looking forward to it going down. So I have definitely learnt a lesson and hopefully so has the rheumatologist that a 5mg is too much - that was a 1/4 of my dose.

Twice
12-15-2008, 09:00 AM
Ug. Classic love/hate relationship with pred. I've been on it for 30 years and I confess that if I have a 'big day' I'll take some extra for the 'buzz', but if I have a flare and have to take a bigger dose for any length of time I learn to hate it again really quickly.

Sometimes coming off it seems like a necessary evil. It's always a bit unpleasant and it makes you feel a bit rubbish, but really, if you don't get over the 'cold turkey' in a few days and continue to feel ill then it's best to go back to the doc and slow it down.

Doctors seem always to be a bit too willing to reduce medication with WG. It always seems to take a little bit more than they think is the right amount.

crackers
12-17-2008, 03:47 AM
two years ago when i first started with this i was on 30mg of pred.since then they have been trying to reduce it but with each reduction comes the return of the symptoms.at the moment i am taking 7.5 and 5 on alternate days but the fatigue has got worse(if that's possible) and that damn cough is back with a vengeance.i know long term steroid use can have it's problems but if there is no alternative medicine to ease the symptoms i would prefer to find the lowest dosage that does the job and stick with it.must have a chat with my rheumy next time i see her.

Sangye
12-17-2008, 04:39 AM
The fatigue can be due to your adrenals not kicking in enough, after all that time on prednisone. That's the case with me, anyway.

Twice
12-17-2008, 05:40 AM
I understand that the body normally manuactures about the equivalent of 7.5mg of the appropriate hormone but will stop completely when you're taking that much or above. Your body quite quickly gets used to receiving the 'extra' (hence the buzz and immediate feeling of euphoria which quietens down).

When a high dose is reduced, the body reacts very much as it would with an addiction but eventually gets used to the new dose. If you stop completely and suddenly, the result can be extremely serious.

When you try to reduce completely off pred, it's the last little bit that can be really hard (say 10-7.5-5mg) because that's the level at which your non-functioning adrenal glands need to re-awaken and start to produce their own hormone. It can take some time for them to get up to speed.

Sarah

crackers
12-17-2008, 06:26 AM
i had tests done a few months ago to see if my body was still producing the steroid naturally and the results were positive,so i can understand the reason for the structured reduction but feeling as rough as i do it doesn't help

john

Twice
12-17-2008, 07:18 AM
Hi John,

Well, I'm obviously not a doctor but please see my post above:


Sometimes coming off it seems like a necessary evil. It's always a bit unpleasant and it makes you feel a bit rubbish, but really, if you don't get over the 'cold turkey' in a few days and continue to feel ill then it's best to go back to the doc and slow it down.

Doctors seem always to be a bit too willing to reduce medication with WG. It always seems to take a little bit more than they think is the right amount.

http://wegeners-granulomatosis.com/forum/images/styles/fancyblue/misc/progress.gif


I don't know what your original symptoms were, but 30mg at diagnosis doesn't seem like a very high dose to me. I think most people seem to start on 60+. If you're getting symptoms recurring when you try to reduce, my unqualified opinion would be that your doctor might want to think again.

crackers
12-17-2008, 08:40 AM
Yeah John was on 60mg originally but he gets a bit mixed up with it all because he was also dealing with the chemo .When they first diagnosed he was septic and had pneumonia.Then his bowel perforated and I really thought we was going to lose him.I dont think he remembers much about the first yr as he was too ill and spent most of it in hospital.When he first started being ill he was getting over a bad case of shingles then he started with all the aches and pains in his muscles his crp at the time was in the 300's and he was anemic.His doctor did a routine blood test and they got him straight into hospital,As you all know this is a roller coaster ride and it takes over your life.I have just come in from a late shift and all the time i am in work i am thinking is he ok is he having a good day or a bad day etc.We have got to try and make a life for ourselves as this disease has taken over but how i don't know.We have a helpline number and i have told him to phone but you know what you men are like.I am worried because he has that stupid cough back agin and he is so breathless the stairs nearly finish him off,he is gasping when he goes up them.Thank God we have a downstairs toilet.
Sue xx
PS It hurts so much to see him reduced to this way of life he has always been a grafter and had not had a days sick in 17yrs

Jack
12-17-2008, 09:09 AM
Sorry to hear that John is having such a bad time at the moment, but hang in there! I was in and out of hospital for the first 5 years, but have not had an overnight stop since. It takes a while to get the right drug regime for the individual. There is no standard set of medication for Wegener's.

Twice
12-17-2008, 09:24 AM
Hi Sue,

Yes, it does get blanked out. I've been in similar situations and when I look back my brain just tells me 'that was a bad time' and leaves out all the details. I don't think enough support is available to loved ones who remember the awful detail all too well.

I once tried to explain the pain to a friend and realised I didn't really have the words. What I did have, though, was the memory of literally being 'driven up the wall' by pain. I have a sort of blog, and wrote this:

The Rognon - 1988 - Driven up the wall (http://therognon.livejournal.com/1366.html#cutid1)

I don't really maintain the blog as much as I should.

crackers
12-17-2008, 11:14 AM
Thank You Jack,sometimes I feel like the worlds biggest moaner,I dont understand this disease have googled it but that only got me more confused and you soon find out who your real friends are.We love the great outdoors and went on campimg holidays with the dogs and would walk miles.Twice I read your blog and shed a tear I am not ashamed to own up to that either.I am trying to stay positive and take the good with the bad.Please bear with me as I work full time shift work but will pop on to say Hi as often as I can
sUE X

Sangye
12-17-2008, 11:55 AM
One thing you can know for sure : Anyone with Wegs understands the ups and downs, the fear, frustration, grief, anger, sadness, loss, isolation and the need to just vent sometimes. Everyone here has a wealth of information about Wegs-- more than you'll find on google, that's for sure! Ask, vent, cry, moan, whatever helps. Take care of yourself. :)

Twice, your blog, wow. Thought I'd been through a lot. Thank you for putting words to your experience of being driven up the wall by pain. I had that experience in April this year, compliments of a huge leg ulcer and foot eruptions. I hope you'll write more on your blog-- you have a wonderful style.

Jack
12-17-2008, 04:27 PM
I think my best form of self protection must be the ability to forget. I have just read the blog by Twice and remembered that I had been there too, but so long ago now. After not sleeping for several days due to the pain, I went to my GP and told him that I had had enough. Not my style at all. :(

andrew
12-17-2008, 08:22 PM
Hey John. I hope I can meet you one day and give you a big bear-hug :)

Sometimes all we have left in us is the ability to cry and there's no reason why we can't use it.

Great Blog, Twice. Nicely written.

RCOSSIO
12-19-2008, 08:25 AM
been there as well...I was finally at 15mg when I had to be bumped up to 40. My doc recommended 40-30 after2 weeks but I decided 40-35 was better and then go to 30; so far so good. He will reduce it again by 5 to 25 next week and then 20. However, when I get to 20 and he will want to reduce me again by 5 but I will recommend a 1mg a week instead of going 20-15 which affected me greatly.

hotnorm
01-06-2009, 05:23 PM
man this drug created an abyssal stomach for me wich was good because when i got really sick i lost over 30 pounds i started my prednisone at 70 mg a day wath a rush and slowly reduced the dosage in a period of 7 months to 5 mg a day wich i am glad i will stop taking the 06 of Jan. and hope my body will take over from that moment on

crackers
01-06-2009, 09:31 PM
Andrew I send a Big Bear Hug to Everyone

andrew
01-07-2009, 07:27 AM
man this drug created an abyssal stomach for me wich was good because when i got really sick i lost over 30 pounds

Yeah, same here. I lost 25kg in hospital then gained 35kg by the time I'd finished the Pred :eek:


Andrew I send a Big Bear Hug to Everyone

Oooooffff.....thanks :D

extremenewenglander
01-30-2009, 08:59 AM
New here. Having the same problem right now! Started on 120 mg. prednisone, then over 8 mo. was reduced to 16 mg. But starting Dec 19th.....the rheummy scheduled me to reduce that amount by 4mg. every two weeks. Going 16 to 12 was o.k 12 to 8 a little tough, but the 8 to 4...oh boy! I went three days then I cheated and went back to 8 for two days and was ok. Then....back down to four and on the third day ended up in emergency room with extreme body pain and fatigue like I never had in my life besides the original onset. Right at this moment today, as per new prescribe, I'm back on 8 mg. and only noticed a small improvement. Now after reading this forum, I am a little concerned that I am indeed being reduced rather too quickly. :eek:

Twice
01-30-2009, 09:05 AM
Yes, (usual 'I am not a doctor' warning) it does sound very quick. It took me years to get from 60 mg down to 10mg and years more to get from 7.5 to 5mg. Coming off pred is not nice at the best of times, but it does seem that WG reacts very quickly to lack of pred if it is still being active. At the same time, withdrawal symptoms are often similar to the malaise of WG.

Luce
01-31-2009, 04:06 AM
I've been dropping down from 60mg every two weeks since October. Have just dropped from 15mg to 12.5mg and feeling ok but have noticed my joints are clicking more and I'm getting the occasional pain in my knee. My knees were the worst affected when I had the arthritic pains before being diagnosed, so I'm a little worried about having to drop down to 10mg on 11th Feb as I think I might start encountering problems.

Then again I suppose you have to try and just make sure the dose gets increased if you start to suffer. I don't know where I'm going after 10mg as I haven't discussed that with my doc yet but have an appt the day before I'm due to drop to 10mg.

RCOSSIO
01-31-2009, 05:57 AM
Have your Rheumy drop it only by 1mg once you get to 15mg.

Sangye
01-31-2009, 11:52 AM
I sure wish I'd known you guys when I was going off pred. We were dropping it 5 mg at a time, I think, and my Wegs symptoms were going wild. The rheumy kept telling me it was all in my head. When I insisted it wasn't, he said it was a reaction to going off the pred. Anything but admit I was right! The worst doc I've ever had, that guy. :p