Pred vs WG pain

[Daggar]

Holly's been experiencing some pain in her hip and one knee which is probably related to the pred withdrawal but has us all sitting on the edge of our seats. Rolling out of bed in the morning seems to be the worst time.

Are there any differences in the pain caused by WG and those caused by pred taper? She has an extremely high pain tolerance so I'm uneasy trusting her judgement at this point.

I know your bone density can take a hit while being on high doses of pred for extended periods... does that recover while on very low doses or do you have to be completely off of it?

[pberggren1]

This is a tough one. I think you should be in contact with the doc on this one.

Pred causes bone loss at even very low doses. I think that bone density can recover somewhat when not on the pred with eating right and propper supplementation. One has to eat right and supplement while on pred as well of course.

Do you or Holly keep a daily journal of what the symptoms are, etc.?

[Sangye]

Daggar, usually pred-taper pain doesn't last for long-- a few days. It can be surprisingly intense, though. I can tell the difference between pred-taper pain and Wegs pain but not everyone can. For me, pred pain is more like flu achiness.

Bones take a long time to build. They will not recover quickly on their own. I suggest you see a holistic doc for supplements to specifically support bone health. It's much more complicated than just calcium and vitamin D.

[pberggren1]

Daggar, usually pred-taper pain doesn't last for long-- a few days. It can be surprisingly intense, though. I can tell the difference between pred-taper pain and Wegs pain but not everyone can. For me, pred pain is more like flu achiness.

Bones take a long time to build. They will not recover quickly on their own. I suggest you see a holistic doc for supplements to specifically support bone health. It's much more complicated than just calcium and vitamin D.

Very well put Sangye. Thank you.

And yes, please go see a good holistic doc about diet and supplementation about bone health. I would not be without my chiropractor or naturopathic doc now.

[Daggar]

Thanks S&P -- I can get her back on track with diet and exercise "once" she gets off most of these meds but that's the frustrating part - learning what you can and can't do at this point when she's still on a significant amount.

I just discovered that she has been using my heavy bag and training gear downstairs which would explain the hip and knee problem on the one side. I've told her to avoid any type of impact but it is a challenge to keep her from trying too much too early.

A good chiropractor that has knowledge with this disease and the respective meds would be a definite asset..... finding one may be a challenge!

[pberggren1]

I would think there would be a few good chiropractors in Calgary. I have found 2 good ones in Swift Curent, but they have never heard of Wegs before.

[Sangye]

A good chiropractor that has knowledge with this disease and the respective meds would be a definite asset..... finding one may be a challenge!
Unlike finding an MD, you don't have to find a chiro who knows a lot about Wegs. They'll know the same as an MD and will have to look it up to know more. You'll have to educate them about it. They'll know the some of the risks with pred (eg osteoporosis) but not all. (We don't study pharmaceuticals, other than a few that present risks to the patient being adjusted.) I can give you more info later-- heading out for more rtx today.

[Daggar]

Good luck with the rtx - hopefully it doesn't drag you down like usual...

Phil - I used to have a chiro about 10 years ago. She weighed about 100 lbs soaking wet and I used to LMAO (afterwards of course) when she'd try to work on me. Picture someone that size trying to kick start an old Harley! She'd of put her head through the ceiling if they were any lower!!:ohmy:

I sat down with Holly last night and went over any pain that she has had in the past week and every one of them related to what she has been doing physically so that was a relief.

Is there anything else, other than joint/muscle pain, that you experience when coming down off 6 months of pred? She notices the energy levels are declining...

[pberggren1]

Ya, I am tapering on pred and I notice mainly the decrease in energy but also some more headaches and pressure in the head around the eyes mainly.

[NicShaf]

I notice that when I taper my Preds, it takes about a week for me to feel "normal" agian. I notice discomfort and stuff, but like Sangye mentioned, it goes away after a couple days. I also notice my energy level go down, this also takes me about a week to adjust to...but in spite of all that, very glad to be tapering:)
My daily journal helps me a lot with my Pred taper and remembering what the last taper felt like.
Best of luck, Dagger.

[vdub]

Holly's been experiencing some pain in her hip and one knee which is probably related to the pred withdrawal but has us all sitting on the edge of our seats. Rolling out of bed in the morning seems to be the worst time.

I ache most of the time and since I'm not on pred, I have to attribute it to either WG or a side-affect of one of my other drugs (maybe the mtx). I'm anxious to get off the mtx, just so I eliminate or confirm a potential cause of the aches. The aches are in both the mucsles and the joints. It kind of feels like having the flu....

I'm glad you could narrow the pain down to the bag. I wish I had that much energy... I can generally walk a pretty good distance, but any high-intensity efforts would knock me out pretty fast (not to mention, hurt).

[Sangye]

I notice that when I taper my Preds, it takes about a week for me to feel "normal" agian. I notice discomfort and stuff, but like Sangye mentioned, it goes away after a couple days. I also notice my energy level go down, this also takes me about a week to adjust to...but in spite of all that, very glad to be tapering:)
My daily journal helps me a lot with my Pred taper and remembering what the last taper felt like.
Best of luck, Dagger.
What Nicole said.