Sinus pain and headaches

[Skempins]

Hi, everyone!

I was only very recently diagnosed, so all of this is new to me. I've been struggling a lot lately with the side effects to my medications, but I trust they are helping.

I wanted to get some input though because I've gone down 5mg in prednisone about a week and a half ago. Within a couple of days, my pain in my hands got bad again quickly, although not the worst it's been. And also, I've been having a lot more sinus pain (more than I have before) and sinus headaches. It's become a daily thing. My nose has been bleeding every day, sometimes flowing, sometimes not. Sometimes I've woken up with blood all over my pillow.

I'm curious as to whether:
a) This increase of pain would be common in coming down 5mg of prednisone?
b) Forgive my ignorance, but I read that a lot of sinus pain can be a sign of the cartilage breaking down in your nose. Can someone tell me the signs of saddle nose developing? I'm curious as to what the symptoms of saddle nose are, because I can't seem to find information on that and I know a lot of Weggies have developed it.

Thank you so much for the information :)

[Pete]

I can only give insight on the prednisone reduction. If you dropped 5 mg from a higher dose, in most cases,it wouldn't be a problem. If you dropped from 5 mg to zero, that would likely give you the pain you mentioned. Since your disease seems to continue with some level of activity, reducing prednisone might not be wise.

[Skempins]

People reply so quickly! Thank you so much, Pete. That's good to know. My sis is a doctor and she seemed surprised as well by the pain since I've only gone down 5mg. I've had fewer mood swings in just going down 5mg, so I like that, but I don't want to reduce pred if it's not going to help as much with the disease as it could. I'm not set to see my rheumatologist again until late January, but I may email him to let him know, just in case.

[Birdie]

People reply so quickly! Thank you so much, Pete. That's good to know. My sis is a doctor and she seemed surprised as well by the pain since I've only gone down 5mg. I've had fewer mood swings in just going down 5mg, so I like that, but I don't want to reduce pred if it's not going to help as much with the disease as it could. I'm not set to see my rheumatologist again until late January, but I may email him to let him know, just in case.

I may have insight if a few things match my original condition, otherwise my input isn't very relevant to your situation.

Was the pain you mentioned in your hands before treatment? Was it severe, feeling like a nail gun shot a nail up the veins in the back of your hand? If so, then holly cow I know that one. When diagnosed my hands were absolutely crippled by those pains. I had them in other places as well but hands were far worse than anywhere else. That was Weg damage to the veins and nerves in my hands. Five hours after 80 mg of pred and those pains were long gone. Within days, maybe a couple weeks, the viens appeared to be recovered. No more black streaks and I had full normal use of my hands. Almost four years now and the viens can finally be used reliably for blood draws, so full recovery of them took a bit longer.

If the pain was there before treatment then I suspect it was due to Wegs attacking those cells, and pred put a stop to it. So if reducing pred brought back the pain then I'd be concerned that Wegs is back doing the same thing again. Worry about that, and do something about it. Get to your rheumatologist soon.

Combine the above with typical Weg related sinus issues, sounding sort of severe from what you posted, makes me think the pred reduction is allowing Wegener's to run amuk again. Get to your rheumatologist soon.

Ok, that's twice I see reason for concern, time to not worry about any other options, it's just time to get to your rheumatologist. Late next month is far too late. And push to get lab work as often as you can get it. Weekly would be nice, especially when changing treatment. Maybe spot changes through blood testing before it allows Wegener's to pop up again and do harm.

[Middlesista]

Skempins. - Sinus pain that I had caused inflammation in my option nerve which caused me to temporarily lose my vision. Had sinus surgery since the MRI showed inflammation and they told me sinus biopsy was neg for GPA but my ANCA was positive and had typical lung nodules that are seen with GPA. Started on hi dose steroids and rituxin but also pretty early into my treatment.

I am not as knowledgeable as some of the other folks here but it seems that you need your treatment plan addressed to get things under control.

Any my other treatment other than prednisone?

[MaxD]

Skempins,

How recently were you diagnosed, what is your current prednisone dosage, and what other medication are you being treated with? Are you seeing a GPA specialist, or is your rheumatologist consulting with one? If you're only on prednisone, that's not sufficient.

I had a lot of pain in the upper part of my nose before I was diagnosed, and I too was terrified it was going to fall off or something. Once the high dose prednisone kicked in (I started at 75mg for almost a month until my first Rituxan infusion, after which I went down to 60mg right away) the pain was gone.

Worry and stress are a large part of our disease, and what docs can't manage for us this forum may help with - so ask away!

[Skempins]

Hi Birdie,

Yes, the pain was in my hands before treatment. It's not quite as bad as it was but the nasal pain is getting worse each day. I previously
had pain and swelling in my hands so bad I couldn't hold a pen or close my hand. I'm not sure the pain was quite as bad as yours sounds like it was, though. I'm glad to hear your pain is better now. I think you are right about the prednisone. After writing this post last night, I contacted my rheumatologist by email and phoned to leave a voicemail this morning. I'm still waiting to hear back but I'm really hoping to see him before our scheduled appointment in late January. He is two and a half hours away in Toronto but fortunately, my parents said they would drop everything to take me there at a moments notice if he had an opening! Thank you for your information and advice.

[Skempins]

Thanks for the information! That sounds awful. I hope your symptoms are far better now. I'm on methotrexate at the moment but hoping to switch to Rituxan as the Methotrexate has made me quite ill.


Skempins. - Sinus pain that I had caused inflammation in my option nerve which caused me to temporarily lose my vision. Had sinus surgery since the MRI showed inflammation and they told me sinus biopsy was neg for GPA but my ANCA was positive and had typical lung nodules that are seen with GPA. Started on hi dose steroids and rituxin but also pretty early into my treatment.

I am not as knowledgeable as some of the other folks here but it seems that you need your treatment plan addressed to get things under control.

Any my other treatment other than prednisone?

[Birdie]

my parents said they would drop everything to take me there at a moments notice if he had an opening!

That's the right attitude.... "moments notice"... :) :)

No waiting. Problems need attention NOW!

[Skempins]

Thank you for your response. I was only diagnosed as recently as the end of October. I had a narrowed bronchus I've been having surgeries for since last year. My pred dosage has decreased. I'm currently at 25mg and am set to decrease it to 20mg this Saturday. I'm also on methotrexate and a sleeping pill but I suppose that's not relevant. I think he had me on lower dosages because my pain wasn't as bad before and I'm also quite young so he didn't want to risk more than he had to. I've had quite a few side effects from my medications so I figured that was good until I started getting more pain. I'm seeing a rheumatologist and a thoracic surgeon. The thoracic surgeon took one look at my bronchus and was convinced it was Wegeners so I think he's a GPA specialist, or am I confused?

Thanks for the information and the reassurance that I can ask you guys about my symptoms!


Skempins,

How recently were you diagnosed, what is your current prednisone dosage, and what other medication are you being treated with? Are you seeing a GPA specialist, or is your rheumatologist consulting with one? If you're only on prednisone, that's not sufficient.

I had a lot of pain in the upper part of my nose before I was diagnosed, and I too was terrified it was going to fall off or something. Once the high dose prednisone kicked in (I started at 75mg for almost a month until my first Rituxan infusion, after which I went down to 60mg right away) the pain was gone.

Worry and stress are a large part of our disease, and what docs can't manage for us this forum may help with - so ask away!

[Middlesista]

Rituxin - lots if folks seem to be on it. Good results is what I have read for most.

[Birdie]

The thoracic surgeon took one look at my bronchus and was convinced it was Wegeners so I think he's a GPA specialist, or am I confused?

I was diagnosed by a periodontist, so getting diagnosed is often the genius and dedication of an individual doctor. Could also be the phase of the moon. Who cares, you got there in time.

It's critical that you're keeping a close eye on symptoms. Don't let anything slip by, especially when they have you reducing pred or adding/changing any medication. Keep learning. Maybe in thirty years you'll be the world expert and take over Andrew's job of operating this forum.

[MaxD]

Thank you for your response. I was only diagnosed as recently as the end of October. I had a narrowed bronchus I've been having surgeries for since last year. My pred dosage has decreased. I'm currently at 25mg and am set to decrease it to 20mg this Saturday. I'm also on methotrexate and a sleeping pill but I suppose that's not relevant. I think he had me on lower dosages because my pain wasn't as bad before and I'm also quite young so he didn't want to risk more than he had to. I've had quite a few side effects from my medications so I figured that was good until I started getting more pain. I'm seeing a rheumatologist and a thoracic surgeon. The thoracic surgeon took one look at my bronchus and was convinced it was Wegeners so I think he's a GPA specialist, or am I confused?

Thanks for the information and the reassurance that I can ask you guys about my symptoms!

Do check out the Vasculitis Foundation website: Vasculitis Foundation (http://www.vasculitisfoundation.org) It gives a list of Vasculitis centers, names of specialists etc. - so glad your thoracic surgeon suspected Wegeners and diagnosed it too. But he's probably not a specialist at remission and maintenance therapies. Your rheumatologist might have treated several Wegeners patients, and may be on the list. It's unfortunate you're far from him - won't hurt to find a local rheumatologist who can coordinate your care with a specialist in Toronto.

Several of us on this forum have responded very well to Rituxan, to bring us into remission. Some of us, including me, even get it for maintenance therapy. I've had no noticeable side-effects from it. I also took Bactrim (to prevent pneumonia) and protonix to prevent heartburn from prednisone.

Anyhow, good luck and hope you get to see the doc soon!

[debra]

Skempins, hi,I'm Deb. I get headaches,that I sometimes vomit from. Mine may be caused by my eye involvement,nevertheless I get them frequently. I had nose pain,in and out with mild bleeding,and my nose changed,but has not saddled. Yet! But I'm not treated,so... I watched it happen though and its very strange! So a different nose,than what I had but,it still works... Since you're treated,this may not happen to u.... Praise God for you're parents!!!!!!! U r very lucky u have this support!!!!! Best to u...... Deb.

[Skempins]

Thank you, that's good advice.


I was diagnosed by a periodontist, so getting diagnosed is often the genius and dedication of an individual doctor. Could also be the phase of the moon. Who cares, you got there in time.

It's critical that you're keeping a close eye on symptoms. Don't let anything slip by, especially when they have you reducing pred or adding/changing any medication. Keep learning. Maybe in thirty years you'll be the world expert and take over Andrew's job of operating this forum.

[Skempins]

Do check out the Vasculitis Foundation website: Vasculitis Foundation (http://www.vasculitisfoundation.org) It gives a list of Vasculitis centers, names of specialists etc. - so glad your thoracic surgeon suspected Wegeners and diagnosed it too. But he's probably not a specialist at remission and maintenance therapies. Your rheumatologist might have treated several Wegeners patients, and may be on the list. It's unfortunate you're far from him - won't hurt to find a local rheumatologist who can coordinate your care with a specialist in Toronto.

Several of us on this forum have responded very well to Rituxan, to bring us into remission. Some of us, including me, even get it for maintenance therapy. I've had no noticeable side-effects from it. I also took Bactrim (to prevent pneumonia) and protonix to prevent heartburn from prednisone.

Anyhow, good luck and hope you get to see the doc soon!

Thanks, lots of good info on that site. My Rheumatologist is on the list. Fortunately, he's published lots of papers on Wegeners, I found out. unfortunately, I tried calling him and a rheumatologist I've seen in my town before yesterday and they're both off until next week.

Im definitely interested in Rituxan. Thanks again for the advice.

[Skempins]

Skempins, hi,I'm Deb. I get headaches,that I sometimes vomit from. Mine may be caused by my eye involvement,nevertheless I get them frequently. I had nose pain,in and out with mild bleeding,and my nose changed,but has not saddled. Yet! But I'm not treated,so... I watched it happen though and its very strange! So a different nose,than what I had but,it still works... Since you're treated,this may not happen to u.... Praise God for you're parents!!!!!!! U r very lucky u have this support!!!!! Best to u...... Deb.

Thanks for the response, Deb. Yes I'm very lucky to have the parents I have. And two of my sisters are doctors. One in a hospital the other a naturopath. So I'm lucky to have good support. And I'm lucky for this forum! That's good to know that your nose didn't saddle. I also hope mine won't because I'm being treated. Right now it feels like a hand is pressing on it. All the best of luck to you. Thanks for the information.

[debra]

Skempins,you're very welcome... The meds will get the inflammation down,and the nose pain should hopefully subside... You're in great hands,so hopefully u will not have to watch you're nose change before you're eyes! Wow,what a crazy sickness huh? Some things seem to defy logic.... Best to u,and you're family.... Deb.

[spiritscript]

Birdie...This is VERY interesting!!! Not one of my doctors ever mentioned that my painful, burning and crippled hands could be WEG related! I never knew this! Thank you! :)
I may have insight if a few things match my original condition, otherwise my input isn't very relevant to your situation.

Was the pain you mentioned in your hands before treatment? Was it severe, feeling like a nail gun shot a nail up the veins in the back of your hand? If so, then holly cow I know that one. When diagnosed my hands were absolutely crippled by those pains. I had them in other places as well but hands were far worse than anywhere else. That was Weg damage to the veins and nerves in my hands. Five hours after 80 mg of pred and those pains were long gone. Within days, maybe a couple weeks, the viens appeared to be recovered. No more black streaks and I had full normal use of my hands. Almost four years now and the viens can finally be used reliably for blood draws, so full recovery of them took a bit longer.

If the pain was there before treatment then I suspect it was due to Wegs attacking those cells, and pred put a stop to it. So if reducing pred brought back the pain then I'd be concerned that Wegs is back doing the same thing again. Worry about that, and do something about it. Get to your rheumatologist soon.

Combine the above with typical Weg related sinus issues, sounding sort of severe from what you posted, makes me think the pred reduction is allowing Wegener's to run amuk again. Get to your rheumatologist soon.

Ok, that's twice I see reason for concern, time to not worry about any other options, it's just time to get to your rheumatologist. Late next month is far too late. And push to get lab work as often as you can get it. Weekly would be nice, especially when changing treatment. Maybe spot changes through blood testing before it allows Wegener's to pop up again and do harm.

[Birdie]

Not one of my doctors ever mentioned that my painful, burning and crippled hands could be WEG related! I never knew this! Thank you! :)

Not just in my hands. Arms, legs, feet, back, neck, anyplace there are veins and nerves. Just that my hands were the worst pain and the most frequent/constant sometimes. Then with all those stabbing pains causing the muscles to twitch and cramp... the muscles were damaged too.

80 mg pred put an immediate halt to all of that. Reducing pred keeps causing muscle cramps... not so happy at that point either. The cramps get really bad and sometimes last for 10 minutes. Always at night when cortisol levels are lowest. Yuky sucky...