body aches and pains from lowering pred

[shauneva]

Hey there has anyone had any problems with aching limbs and back ache? My doctor thinks its a symptom of lowering the pred almost like being in withdrawal I started off at 70mg and pains started when i went down to 12.5 now i have too stay at 10 for a while I take panaDol for the pain but it dosent do much doctor says i just have to push through it has anyone else experienced this ? how long is it going to last?:sad:

[misskay]

Been having the same thing since lowering my pred. Mine started when we hit 15, now we're at 10mg.... and I'm pretty miserable. Doc wanted to drop to 5mg this week, I said no way. I'm about to leave on a week long trip, and not planning on making things worse right before I leave...

[DEE]

Same here had a couple rough days which i put down to preds tapper 17 1/2 to 15mg until the end of the month , joint pain worse and headache :ohmy:

[elephant]

I have never experience joint pain withdrawal on prednisone. I have a feeling if the joint pain persists then it's the Wegeners hanging around.

[misskay]

geez I hope not... the fatigue is back with a vengence also. Joints and back have been hurting for weeks now. Also headaches and dizzy spells. Have mentioned it to the doc, he doesn't seem overly concerned...

[elephant]

Misskay those symptoms sound like active wegeners. Are you seeing a Wegeners specialist? I had multiple dizzy spells/fainting that landed me in the cardiac unit for 24 hr stay being monitored. Are you on anything else besides prednisone?

[Jack]

It may be a personal thing, but I associate joint pain similar to arthritis as being Wegener's related and joint stiffness is connected with Pred. For many years now I have had generalised pain that is hard to pin down - bones, joints, tendons, muscles. I just live with it. :(

[misskay]

elephant, we've talked about getting checked again by the Cardiologist as I have underlying heart ussies anyway (Mitral Valve Prolapse) to see if the dizzyness is related to that. I'm on Cytoxan (150mg) Pred (10mg), Atenolol, Zyrtec, Nasacort, Duramist, Lunesta, Bactrim DS, Albuterol, cacium and Vitamin D...
jack, pretty much the same here. Joints, bones, muscles, cramping, etc...

[elephant]

Misskay you really need to get the dizziness and headache checked out, even though you have underlying heart issues. Call your Cardiologist Monday and let them know exactly whats going on. They should get you in soon. It can be your heart or head...or wegeners attacking the blood vessels...heart or head....who knows. You need to get this taken care of because if you pass out ...it could be dangerous. Don't want to scare you but I have been through this and taken care of patients like ourselves. It could possible one of your meds causing dizziness, I think Atenolol is one. But still the docs knew I was on Atenolol and I wore a heart monitor at home for a few days, sometimes our patient wore it longer.

[Sangye]

I've had both Wegs joint pain and pred-withdrawal joint pain. I can definitely tell the difference, but I don't know if everyone can. To me, pred-withdrawal pain feels more like flu pain. It's vague. I was surprised at how painful it could be, though. The main way to distinguish it from Wegs pain is that it goes away in a few days. It might come back when you taper again, and again it will last a few days. Wegs pain just gets worse.

Misskay, a drop from 10mg to 5 is way too fast. That's enough to wake up Wegs at worst, and make you feel unbelievably bad at best. It's too much to ask of your adrenals to kick in that fast, too.

[Jack]

Agreed! 1mg at a time is plenty once you get to 10mg and from 5mg down, it is even more difficult, if indeed it is possible at all without problems. Hope it is for you, but taking your time now can save you from a setback.

[julia]

A while back someone posted a link about reducing pred. It was a website that gave detailed instructions on reducing pred. I have tried to find the post and the website but have not been able to find it. My guess is that it was one of Sangye's posts. If anyone remebers the post I am anxious to read it again.

Re; pain while reducing. I have had joint stiffness/pain each time I tapered (under 25 mg.) Since I have tapered from 10 and lower the pain is more noticeable but does go away in week to ten days.

[Sangye]

I posted it, but I don't have the link. I found it by googling how to taper pred.

[manalolana]

I found this that may be helpful for you shauneva. How to Taper the Dosage of Prednisone | eHow.com (http://www.ehow.com/how_5687522_taper-dosage-prednisone.html)

It states to perhaps divide your dosage to AM and PM if you are not already doing that. I am going to try tomorrow.

I get headaches from tapering prednisone. General body aches are everyday thing that I can't tell the contributing source. Hope you are feeling better!

[shauneva]

thanks everyone you have beem most helpful as usual:biggrin1:

[misskay]

apologies... fingers work faster than brain as usual. I SHOULD have typed that he wants me to drop to 7.5mg.... NOT 5mg. I'm still saying 'no' until after my trip this coming week. Then depending on how I feel, we'll see. I admit I am worried about dropping so fast, but also that I want off this darn Pred as soon as possible...

[Sangye]

That's better, but it's still a big jump sometimes. You're wise not to do it before a trip!

[elephant]

I agree with Sangye. If your not feeling so great, tapering from 10 to 7.5 mg (prednisone), might be hard on your body. Everyone is different, trial and error. I been playing around with pred since July 2008...up and down.

[Natalie]

I m with you Elephant on this one .. i have been having Crazy joint pain ever since the issues I have had with my Breast . I was telling My doc each Time I visited him , My pred was Increased from 5 mg to 15 mg .. not because of the joint pain but my blood tests were high . I still have bouts of server joint pain but not as much as when i was on 5 mg .. and breast issues . / wegs flare

[elephant]

Natalie are you on immunosuppressant like cellcept, imuran or methotrexate...besides prednisone? My doc might have to increase my cellcept because I am still having mini flares. She wants to decrease the prednisone but slowly and increase the cellcept. Prednsione has done so much damage to my body...

[Natalie]

Natalie are you on immunosuppressant like cellcept, imuran or methotrexate...besides prednisone? My doc might have to increase my cellcept because I am still having mini flares. She wants to decrease the prednisone but slowly and increase the cellcept. Prednsione has done so much damage to my body... yes Elephant I'm on Celcept 3000mg daily and have been since Nov 2007 . prior to that Is when i lost my vision in my left eye and I was on 2ooomg daily with I think 3mg pred .. but it all turned bad .

[elephant]

Do you think the cellcept is holding your wegeners? At that dosage 3000mg is the most we can take.

[manalolana]

Aloha Natalie,
Do you mind sharing how you lost your vision on your left eye?

[julia]

I posted it, but I don't have the link. I found it by googling how to taper pred.

Found it under medication forum. title:ways to taper pred.
I tried googling but did not find it. I remebered the page was pink or feminine in nature and sure enought it had a floral border.

My rhuemy has me tapering from 5mg by taking 5mg one day and nothing the next. I was very leary of this but it seems to be going o.k. Not great, not bad just o.k.

[Jack]

I've seen that method recommended, but not many on this forum seem to have tried it.

[Sangye]

Alternating days is terrible for me, especially at very low doses like that. It depends on how long you've been on pred, though. You'll know if it's not working for you. A good warning sign is afternoon sleepiness, like you've been injected with anaesthetic.

[Jack]

I know that it would not work for me. I feel bad by the middle of the afternoon if I forget to take a dose.

[manalolana]

Last two days, I tried dividing up my dosage in half, 50% in the morning and the other around 2pm. I am only on 13 per day now. Well... last two days, I couldn't really sleep although it seemed like it gave me more steady energy throughout the day.

So today, back to full dosage in the morning.

[Sangye]

Try it again once you get to 10 mg or below. That extra couple of mg of pred makes a big difference.

[manalolana]

Ok Sangye. :smile:

I hope to get there sooner than later :D

[Sangye]

Take your time. I understand what it's like to be anxious so close to the end, but it's quite common for people to rush it and get into trouble-- either Wegs wakes up or their adrenals don't.

[Natalie]

Aloha Natalie,
Do you mind sharing how you lost your vision on your left eye? G'day manalolana i dont mine at all .. this is the original post I sentg when i first got on this site .. sorry its easyer tios way hope this helps a bit ,.,, Nat
All started with watery eyes headaches my eyes were so sensitive to light . 8 months later i had a weird thing happen to my eyes .. Blurry vision my right eye went all blotchy and lasted about 1 1/2 hrs then went , no one could explain it . no one could tell me why my eyes were extreamly sensitive to light watery all the time with severe head aches all the time . Blood tests were fine Ct showed my sinises were blocked . 8 months later they gave me a sinis op removerd some bone because they said the crusting was getting stuck and that why your getting headaches and watery eyes . Didn't help. They kept thinking all the pain was comming from either my nose or ears . No one was listening to me about my eyes . 3 months later when to hospital with blurry vision , dont know why sent me home , was back with in 3 days and addmitted for CT and MRI , still no answers sent home .. my body was aching bad Had a fluro angiography all good vision no better they started me on IV steroids 3 doses , this did clear the eye a bit but soon became blurry after IV doses was stopped . I finally went totally blind in my left . alot more to this story but If i could give some some advise keep at your doctors to dig deeper , I had a few MRI's of orbits but no one could see anything wrong until my Ophthalmologist invited me up to Brisbane one night to conference with about 20 other Optho's and one of them spotted it right off the bat , Sorry couldn't tell you what ?? but what I know it was Granuloma build up around my optic nerve , which in turn killed It sending me blind. I don't know if im helping or what but I f I tell my story maybe it will save someone else from losing there sight . Natalie

[elephant]

Thanks for sharing Natalie, that is a shame when the docs don't listen...again they seen to tune into vital organs! Hope your feeling better.

[Geoff]

Thanks Natalie, hopefully your story will help someone on this forum to 'guide' the docs in the right direction with a few well aimed prompts.

[hilhoff]

was having horrible pain when doc got me down to 25mg now im back up for 60mg and tapering 5mg every 10 days. pain hasnt gotten anybetter with having the preds higher, its a possibility that i will have the chronic pain from all the blood clots.

[elephant]

Hilloff, where are your blood clots? Lungs, legs? Where is your pain? Any other symtoms that you are having?

[hilhoff]

i had the blood clots in both of my legs and i had 2 manage to slip into my lungs before they were able to put the green field filter in, my legs are swollen 95% of the time. and recently it seems as if though its getting worse, and the vasculitius is starting back on my skin. alos been having horrible headaches, doctor is making the appt. so have an MRI done to make sure there are no legions on my brain. :unsure:

[elephant]

It could be the Wegeners kicking in especially the vasculitis on your skin and headaches. I use have horrendous headaches pre-diagnosis. Need to get checked out soon, if getting worse. Do you see a Wegeners specialist...sorry I forgot? Increase swelling can mean many things...too.

[Sangye]

You should not continue to have leg pain after the blood clots are resolved. I assume you mean joint pain? That has nothing to do with clots and sounds more like active Wegs. However, if you have a lot of swelling in your legs, you can have pain due to pressure on the nerves. I especially have pain from edema along my shins, on the tops of my feet and my outer ankles. It's easy to tell if the pain is due to edema, as it's worse in the most swollen places.

[hilhoff]

i do see a Wegs specialist, i really wouldnt consider the pain to be joint pain. i was having ankle pain here recently, but i took some tramadol and it seemed to let up for the most part. but my legs are constantly swollen and constantly hurt. the doctor thinks that i will always have the chronic pain in my legs from the clots since they were so bad, had to undergo 3 days of surgery for them. :/ as for the active Wegs one part of the ANCA test is coming back positive and one part negative, so im not sure what that means. i just know that i need something stronger for the pain, and most of my body is really tight, like my upper arms. could that be caused from the preds?

[Sangye]

ANCA is not often a reliable indicator of Wegs activity. It's useful to diagnose Wegs but not to track response to treatment in most people. Wegs activity is typically determined by measuring inflammatory markers in the blood, signs and symptoms--with heavy emphasis on symptoms.

I also had huge numbers of clots in my legs and lungs. (One clot ran from my knee to the top of my thigh and was the width of my pinky. My lungs had more clots than they could count.) Blood vessels have a remarkable ability to heal, though and personally I wouldn't accept that pain due to a history of clots is permanent. However, edema due to vein damage might be. I've had docs attribute numerous lower extremity symptoms to my history of clots when they turned out to be due to active Wegs.

[JanW]

Yes, it's not uncommon for ANCA to remain positive even with no wegs symptoms and normal inflammatory numbers, so I would be cautious about any doctor trying to use that as a primary source of determining WG activity. And, I will tell you what both of my primary docs (rheumy and ENT) told me -- if a WG patient has anything go wrong in their body, always assume WG first. Why not? It's a huge risk if you think it's something else, but it's really the WG smoldering.