Buffalo Hump & Headaches

[TOBEY32]

Just noticing I've developed one.
Was at 60mgs for 6 wks, now 50mgs for the next 5 wks - down, down I'll go.
Been waking w/ headaches, wondering if this tissue is pressing against something.

David

[delorisdoe]

Just noticing I've developed one.
Was at 60mgs for 6 wks, now 50mgs for the next 5 wks - down, down I'll go.
Been waking w/ headaches, wondering if this tissue is pressing against something.

David

I had a buffalo hump...I dont remember if it included headaches but if I am picturing my hump I can see why you asked. Im still gessing no. Maybe you are sleeping differently due to the hump and therefore getting headaches?

p.s. please remember that I know next to nothing about wegeners...I just learned how to spell wegeners 2 months ago.

[TOBEY32]

Learned how to spell it early on - all E's, no A's!
Taking Nasonex as well and wondering if it's that. Gonna stop again, see if they go away. Might be late-night eating or what I'm eating as well.
I'm an occassional migraine sufferer anyway, but not as much as lately.

David

[Rose]

Is a buffalo hump permanent? Will it eventually go away when pred is stopped or drastically reduced? I have (until the other day) been on 5mg for about 2.5 years and the hump is still there as is the round face. Better than when I was on high doses of pred but it is still noticeable. It has never caused me headaches.

[elephant]

wondering why your doctor had you on prednisone 60 mg for 6 weeks, they usally try to taper you down within 2-4 weeks, and taper down 10 mg every two weeks.

[Sangye]

The buffalo hump itself won't cause headaches. If you've gained pred weight in your neck area it might be affecting your breathing at night, causing morning headaches

[TOBEY32]

I did go from 60mg to 10mg within a couple of months time, was back at the hospital a couple of months back and put on Rixutan once a week for a month. Right now I'm not taking anything other than Pred for my Weg's. Hence the higher dose.
Does that still not sound like a good idea to some of you? My doc is familiar w/ Weg's and studied at Mayo.

David

[elephant]

David, you need a Wegeners specialist, a rhuematologist who sees many wegeners patients a week. When I was first diagnosed, I didn't even know or heard of a Wegeners specialist. I was told to go down state and see a Rhuematologist that saw some wegeners patient, but I felt that my care was not that great. Then I went to a local Rhuematologit and went down hill, and my local Rhuemy called the Wegeners specialist at Cleveland Clinic, because she didn't know what to do with me. But I am glad she had the brains to call the best.

[TOBEY32]

Right now I still don't doubt he's enough, but maybe he's not. I don't have a lot of choice right now as I don't have insurance and something has been worked out with him. When he mentioned other Weg's patients and graduating from Mayo he had my vote. My lung doc said don't switch, keep him, that he was a good choice.

Can I ask, elephant, I've got my picture within my profile so I don't understand why it doesn't show next to my User ID.
Also, when one chooses "Reply to Thread" are people notified via e-mail, or only notified via e-mail if they sent a Private Message?
Thanks much...

[delorisdoe]

there are two differnt pictures you can have. one is your avatar and one is your profile picture-i think that is what it is called. Put the picture in both and it will show up. I recieve notifications for both replies and pm's but some people do complain of not getting notifications at all

[TOBEY32]

Mine must be going to both as I didn't send the PM to you but elephant. Not so private, huh? Doesn't matter. Thanks for the info...

[delorisdoe]

Mine must be going to both as I didn't send the PM to you but elephant. Not so private, huh? Doesn't matter. Thanks for the info...

I am confused...or maybe you are. I don't think the pm to elephant was a pm at all. :glare:

[delorisdoe]

I did not mean to glare. I think :glare: he looks like he is saying " hmm"

[drz]

Is a buffalo hump permanent? Will it eventually go away when pred is stopped or drastically reduced? I have (until the other day) been on 5mg for about 2.5 years and the hump is still there as is the round face. Better than when I was on high doses of pred but it is still noticeable. It has never caused me headaches.

Mine seemed to decrease as pred decreased. Still have puffy eyes (bags under the eyes) and lot more wrinkles as pred decreased. I am at 5 1/4 now but don't know how low i will or can get.

[elephant]

Take your time when you wean off prednisone, no matter what the docs say. I been trying to wean for two years. I am down to 3 mg and scared to go down to 2 1/2 mg of pred tomorrow. I am going to do this tommorrow and keep a close eye on any weird symtoms. Good luck and stay close to the Weggie dog.

[drz]

Take your time when you wean off prednisone, no matter what the docs say. I been trying to wean for two years. I am down to 3 mg and scared to go down to 2 1/2 mg of pred tomorrow. I am going to do this tommorrow and keep a close eye on any weird symtoms. Good luck and stay close to the Weggie dog.

One question under consideration now among the Weg specialists seems to be whether it is better to remain on a low dosage of pred (five or so mg) as long as one is one a maintenance drug like azathioprine since one thought is it could or might help prevent flares but there is no research yet to confirm this one way or the other. Like a lot of other medical issues there is not enough research to answer these questions such as is four sessions more effective than two sessions of RTX, is it good to give RTX as a prevention procedure or to wait until there are definite new symptoms and lab markers to indicate it is needed. The experts don't agree on many of these issues.

My guess is I might end up taking somewhere in the 3 1/2 to 5 mg range of pred for the next 18 months or so cause my experts are predicting another 12-18 months of azathioprine. I hate what pred has done to me but I dislike the idea of a big flare and months back in the hospital even more so will probably opt for whatever conservative treatment the doctors recommend. No of mine are pushing me to get off, rather they are suggesting it might even be better to stay on a small dosage long term. They said it is all right to try wean down low and even try get off the pred if I wish to try do so but express doubt that it will work for me given my history with GPA.

[elephant]

Like you said the docs can't seem to agree. I have one rhuemy saying get off pred asap and the other saying take your time...or just stay on the 4 mg of pred. I am really taking it very slow. But note, I am on two immunosuppresant drugs (cyclosporine and cellcept), so my chanced of flaring are pretty low. I do take Bactrim three times a week.