1mg difference. REALLY???

[godgirl]

So, I'm a bit frustrated.

I've been holding steady at 20mg of methotrexate and 10mg of prednisone since late May. Last week my rheumy told me to drop to 9mg of prednisone. I've known this was coming - and that was cool by me. However, right after I started at 9, I got a two day migraine. I've only had one other migraine that's lasted more than a day - the week before my first definitive symptom popped up (scleritis). My hearing also started to fluctuate and I have new tones for my tinnitus. Eh, that happens occasionally, so I didn't think much of it.

And then today, I blew my nose and there's some blood in it. Not a lot, but enough to shock me. I haven't had any blood in my nose since April. I started putting all these pieces together - along with being really tired this week, and threw my hands up. Really??? One lousy milligram can make this difference?

Seriously, can one milligram make the difference? It seems so odd to me. Thoughts?

Jen

[PJ2010]

That's strange isn't ?

Its probably just WG doing it's annoying thing to you.

You know, I know it's not the right thing to do but I took myself off all my meds cold turkey nearly 2 years ago. I was on cyclophosphamide, I think 15 mg of Prednisolone and about 5 other meds and nothing happened to me.

They say it could have hospitalised me but nothing happened at all !!!

As we all know, this disease effects everyone in a different manner.

Stay well. :)

[Rose]

It is possible but it could also be a flare coinciding with the reduction in prednisone. I would go back up to 10mgs for a few days and see if the symptoms disappear. if they do then you know that even 1mg is too much of a reduction for you and you should reduce by 1/2 mg. If the symptoms continue at 10mg then you could be flaring and you should speak to your doctor,

Rose

[Debbie C]

Jen,I have been on 5 mg for about 4 years. I was told by my rheumy I could wean off it . At first I went to 4 mg. and had withdrawal symtems, then went back to 5 after that I tried 4 3/4 and still got ill. SOOOO yes 1 mg can make a difference. My kidney dr said it could take up to a year to get off the 5. Good Luck.

[LisaT]

I'm on day three of a monstrous headache going down to 5 mg from 6. Hadn't realized until I read your post that this is likely why, or at least part of the reason. I'll go back up to 6 and see what happens. Rose's advice sounds good.

[annekat]

This pred tapering thing is a bear! I haven't been below 7.5 and have flared every time I get that low. I'm now supposed to be dropping from 15 to 12.5 by alternating the 10mg and 15mg doses. I told the doc I will do it when I am ready. He said OK. He's finally getting it.

[godgirl]

Thanks for the encouragement. Seriously. I don't feel crazy or alone! And sometimes I do with this stuff.

Well, I might just go up to 10 again. My migraine is returning tonight. Encore presentation. Awesome.

I'm going to see if imitrex will help it, but it didn't earlier this week. I'm also thinking about just pushing thru the weekend to see if this passes. If it doesn't, I'll call my rheumatologist. <sigh>

One. Lousy. Milligram. Grrrrrrr! Oh, prednisone. I love and hate you all at once.

[drz]

Jen,I have been on 5 mg for about 4 years. I was told by my rheumy I could wean off it . At first I went to 4 mg. and had withdrawal symtems, then went back to 5 after that I tried 4 3/4 and still got ill. SOOOO yes 1 mg can make a difference. My kidney dr said it could take up to a year to get off the 5. Good Luck.


I used 1/4 mg reductions too on way down to 5 mg. I got some 1's and 2.5's and cut them as needed to make it work. My reductions of 1/4 mg were noticeable but not too serious but often it took a couple weeks or more before I felt ready to cut my dosage further.

[annekat]

I used 1/4 mg reductions too on way down to 5 mg. I got some 1's and 2.5's and cut them as needed to make it work. My reductions of 1/4 mg were noticeable but not too serious but often it took a couple weeks or more before I felt ready to cut my dosage further. Funny how some people need really small reductions and others can go a lot faster. I suppose it could have to do with how long they were on high dose pred, or over 20mg. I've never gone as slow as 1/4, but I suppose it would be worth a try, and I do have a good supply of 1, 5, and 10mg pills. My doc would probably laugh at the suggestion, not that he really knows anything. He did mention to me a couple of times that I shouldn't try to go below 5mg. on my own, but I haven't run into that situation yet.

[Geoff]

Some classic advice here Jen about pred (the necessary evil) and tapering.

The basic advice is the lower you drop, the slower you go.

What I found out was that my immunosuppresant was'nt up to the job, and so effectively I was "fire fighting" with the pred. You might like to keep that in your locker as you go and report back to your Doc. Keep a Diary, but it seems you are on that case already!! Good Luck.

[mishb]

Some find it easier to not just drop to 9mg each day, but to have a 10mg every second day and slowly wean to a 10mg every 3rd day etc.
It took me a month each 1mg pred drop from 10 to 5 and then a couple of months from 5 to 3 where I am now.....and staying.

Good luck Jen and I hope it starts getting easier for you.

[annekat]

Some find it easier to not just drop to 9mg each day, but to have a 10mg every second day and slowly wean to a 10mg every 3rd day etc.
It took me a month each 1mg pred drop from 10 to 5 and then a couple of months from 5 to 3 where I am now.....and staying.

Good luck Jen and I hope it starts getting easier for you. That's interesting, Michelle. I've seen some such alternating schedules on here that sounded pretty successful. I might try something like that.

[Alysia]

yes. one mg makes the diffenence. I can't go under 5mg. I tried 4mg and had terrible headaches.

[annekat]

yes. one mg makes the diffenence. I can't go under 5mg. I tried 4mg and had terrible headaches. I have not experienced headaches from pred reduction, but maybe I just haven't gotten down low enough for that to happen. Sounds miserable.

[Jayne 14]

I have had an awful headache going from 20 to 15
So tomorrow will be going upto 17.5 & going more slowly down to 15
So o m g yes 1 mg degrease makes a difference 😥


Sent from my iPad using Tapatalk

[annekat]

I have had an awful headache going from 20 to 15
So tomorrow will be going upto 17.5 & going more slowly down to 15
So o m g yes 1 mg degrease makes a difference 


Sent from my iPad using Tapatalk I have had trouble around that level, too, just not with headaches. More with fatigue, stuffy ears, dizziness, more mucus and coughing, maybe some light rashes on arms. I'm glad not to have the headaches, but am aware I could still experience them. I also found that going from 20 to 15 was too big a drop and 17.5 was better or even just 1mg. at a time. I do what I feel more than what the doc suggests. I doubt he has ever been through this.

[mishb]

I have not experienced headaches either during any reduction.
It is joint pain that I feel - ouch :crying:

[drz]

I have not experienced headaches either during any reduction.
It is joint pain that I feel - ouch :crying:

My usual signs of any decrease during taper was more joint pain and fatigue and more blood in my nasal rinses.

[annekat]

My usual signs of any decrease during taper was more joint pain and fatigue and more blood in my nasal rinses. I had the joint pain in the back of my mind.... I really haven't experienced it during taper, but I sort of expect to when, or if, I get below 5mg. Before dx, I had joint pain and found that 5mg. would wipe it right out. As for blood in nasal rinses, yes, I've noticed that, too, not a lot, just enough to remind me that it's there.

[Widthofacircle]

I have been pred free for a week now following a slow taper. Diagnosed in April 2009, it's been a long hard road. Fingers crossed I will have no adverse effects as I have been looking forward to getting off pred for a long time. Still taking 3000mg Cellcept a day.
Brendan

[annekat]

Congrats, Brendan, and I hope you manage to stay off the pred!

[Jayne 14]

I have had an awful headache going from 20 to 15
So tomorrow will be going upto 17.5 & going more slowly down to 15
So o m g yes 1 mg degrease makes a difference 😥


Sent from my iPad using Tapatalk

[mishb]

Woot Brendan, that's awesome :w00t: :hug3: :lol::hug3::lol:

Congratulations

[CgM]

Congrats Brendan. I have been going down 2.5mg a month based on my MD's plan and am currently at 2.5mg each day. End of month I will be off them as well. Looking forward to it.

Going down 2.5mg each month has worked well, other than the first few days of tiredness, sore muscles, the decline has not been very taxing. Good luck to everyone else trying.

[godgirl]

Well, I finally emailed my rheumy about this. She said it's not normal to be symptomatic while tapering. She's keeping me at 9 since I'm feeling better but wants me to let her know if symptoms disappear... Crap. I really wanted this to work.

Jen

[Widthofacircle]

Woot Brendan, that's awesome :w00t: :hug3: :lol::hug3::lol:

Congratulations
Thanks Michelle.
It is like a new lease of life. As I say fingers crossed all will be well. I gave up smoking 5 years ago which, I can tell you was a big achievement for me and giving up pred is way bigger.
Brendan

[Widthofacircle]

Congrats Brendan. I have been going down 2.5mg a month based on my MD's plan and am currently at 2.5mg each day. End of month I will be off them as well. Looking forward to it.

Going down 2.5mg each month has worked well, other than the first few days of tiredness, sore muscles, the decline has not been very taxing. Good luck to everyone else trying.
In wish you the best of luck CgM