Could this be related to Prednisone Taper

[Middlesista]

GPA - Finished 4th Rituxin before Christmas. Started on 60 mg prednisone in addition to IV solumedrol doses in hospital. Involvement optic nerve and lung. I never really had a lot of pain other than wicked headache with vision loss and optic nerve issue-but no real joint pain.


I am currently titrating prednisone - going down by 2.5mg each week and I am noting occ joint pain and am wondering if this might be related to prednisone taper since I did have this before-it is bearable and no redness to speak of. I mentioned it to RA and that is why I am titrating by the2.5mg rather than the 5mg that we had initially talked about. Wondering if anyone has experienced anything similar?

[Birdie]

GPA - Finished 4th Rituxin before Christmas. Started on 60 mg prednisone in addition to IV solumedrol doses in hospital. Involvement optic nerve and lung. I never really had a lot of pain other than wicked headache with vision loss and optic nerve issue-but no real joint pain.


I am currently titrating prednisone - going down by 2.5mg each week and I am noting occ joint pain and am wondering if this might be related to prednisone taper since I did have this before-it is bearable and no redness to speak of. I mentioned it to RA and that is why I am titrating by the2.5mg rather than the 5mg that we had initially talked about. Wondering if anyone has experienced anything similar?

Sissy, I suggest dropping the rules for pred reduction. Instead, reduce and wait until you are stable for at least a week. I went up and down for many months following a routine of reducing by a certain amount in a specified time frame, as directed by medical. It's brutal!!! Not good for your body. After about eight months of nothing working and still at 80 mg, the rheumatologist finally told me to ignore him and do what worked (he was tired of seeing me twice a week).

It took about four more months to go from 80 down to 5 mg. Sooo... from that perspective, I doubt your isssues are due to the amount of reduction, more along the lines of the frequency. I reduced from 80 to 70, had severe issues for a few days, waited a couple weeks while they were less severe, until the reduction part of the symptoms went away completely, and then another week to demonstrate stability. I didn't reduce, ever, unless my symptoms were stable.

My last reduction was a few months ago. I went from 5 mg to 4 mg and two days later found myself in the ER with indescribable muscle cramps. I'm still waiting to reduce another 1 mg.

[Pete]

I agree with Birdie. Slow and stable is better. It took me over a year to go from 60 to 0. I had no problems going from 60 to 20 at 5 mg/month. The last time I tapered down from 10 at -1 mg per month. Got down to 3 and started having roaming joint pains. I went back to 5 and have stayed there. I had four rtx infusions last August and have had no immunosuppressants since. I'm stable and symptom free.

Btw, the main reason I'm at 5 instead of 4 is convenience. Easier to count and take one pill per day instead of four. :)

[Middlesista]

Thanks Birdie - the joint aches are not bad but just thought it was strange since I really had no joint paint before starting the Rituxin and Prednisone and am just noting it now.

What you write makes sense - if I am still achy at the end of the week I will slow down th freq. Have blood work next week so will be talking to RA again

Thanks Birdie!

[Middlesista]

Thanks Pete!

[Birdie]

the main reason I'm at 5 instead of 4 is convenience. Easier to count and take one pill per day instead of four. :)

I did 5 mg for a long time with no issues other than regular type fatigue. Then last march I took methylprednisolone as a companion to antibiotics, it ruined me. Fatigue went from 7 to 293 on a scale of ten. Reducing pred from 5 to 4 has been an improvement, still not enough so I'm looking to reduce further, maybe soon depending on blood work next week.

[debra]

Birdie, hi... My sista in the middle, hello there... Birdie, I thought methylprednisolone, was just pred in a different delivery system? I'm to lazy, to look it up, my eyes are tired and I'm to lazy, so please, if you will, please clarify, for me? This is what I was going to use on, Scooter, liquid? For adrenal disease, with lupron depot... Hes, gone, but I'm curious on this, for myself... My dad is also on pred, so interested for numerous reasons... Thanks! Debra...

[MaxD]

I had joint pains - in places old and new as I tapered down on prednisone. When I got down to 8mg I felt I had aged 30 years within a matter of months. Never unbearable but really unpleasant. My docs wanted me off prednisone as soon as was reasonable and suggested I bear the temporary (several months) of unpleasantness. Looking back, I'm glad I got off prednisone when I did. It took a good 6 months after weaning off that I realized the pain was all gone and my stamina had improved considerably. In hindsight I wish I had done light exercises regularly while on prednisone - that might have helped recover faster.

[Middlesista]

Thanks Max - glad you were able to get off Prednisone. I have been walking a lot to try not to lose any more stamina then I already have lost.

[MikeG-2012]

I had joint pains - in places old and new as I tapered down on prednisone. When I got down to 8mg I felt I had aged 30 years within a matter of months.

Me too Max. Mine was bout 4 months to get back to a normal level of joint pain. Feels really good to be off that nasty stuff, doesn't it?

[Middlesista]

What about the crazy fatigue? The fatigue- still no appetite and occ what almost feels like hot flashes cont to haunt me - RA and I have discussed this and he seems to think a lot of it is related to prednisone which is why he wants to try and get me off prednisone I am ok with that as long as it is safe to do this. He feels like the Rituxin is working since the CT scan I had yesterday indicated all the nodules and cavitary lesions were gone - now that's a good thing!

[debra]

My sista, who's stuck in the middle, this is so awesome! Good for you... I'm not on pred, yet, and I will say, the fatigue that I feel, is not even measurable... It's the hardest to deal with... I slept, for the first almost three years, over twenty hours a day, getting up to pee, and maybe eat a little something, then back out like a light... Now I can't sleep! Always changing... So, think its both, in terms of fatigue, but in my opinion, would say the weg dog itself... Deb...

[MikeG-2012]

What about the crazy fatigue? The fatigue- still no appetite and occ what almost feels like hot flashes cont to haunt me - RA and I have discussed this and he seems to think a lot of it is related to prednisone which is why he wants to try and get me off prednisone I am ok with that as long as it is safe to do this. He feels like the Rituxin is working since the CT scan I had yesterday indicated all the nodules and cavitary lesions were gone - now that's a good thing!

Hot flashes, OH YES! That was a huge problem when I was on pred. One minute, feeling fine, next minute, soaking through clothes sweating, another minute, shivering and freezing cold in wet clothes.

My hot flashes went away once I was under 10mg, but I am sure a lot of people are different that me.

Once the lungs are clear, and the RTX seems to be working, it's usually time to slowly wean off the pred. I believe that you'll feel better once you're off it.

[Middlesista]

My sista, who's stuck in the middle, this is so awesome! Good for you... I'm not on pred, yet, and I will say, the fatigue that I feel, is not even measurable... It's the hardest to deal with... I slept, for the first almost three years, over twenty hours a day, getting up to pee, and maybe eat a little something, then back out like a light... Now I can't sleep! Always changing... So, think its both, in terms of fatigue, but in my opinion, would say the weg dog itself... Deb...
I thought about that Deb but when I was first diagnosed and GPA was wrecking havoc with my eye and lungs I did not have this horrid fatigue?

i do hope you get some good sleep and find the help you need to try and get better. But like I said before - you are the captain of your ship..

[Middlesista]

Hot flashes, OH YES! That was a huge problem when I was on pred. One minute, feeling fine, next minute, soaking through clothes sweating, another minute, shivering and freezing cold in wet clothes.

My hot flashes went away once I was under 10mg, but I am sure a lot of people are different that me.

Once the lungs are clear, and the RTX seems to be working, it's usually time to slowly wean off the pred. I believe that you'll feel better once you're off it.

Sorry you have had some of the same symptoms Mike but at least I know it can be Prednisone related

I hope I am able to titrate off the prednisone with no issues....

thanks for for your feedback!