Sinus pain and headaches

[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.

[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!

[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.

[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.

[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 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!

[Skempins]

Do check out the Vasculitis Foundation website: Vasculitis Foundation 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.

[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.