more sinus and legs hurting

[vdub]

Well, I've been off the mtx for 3 weeks. Almost coinciding perfectly with the demise of the mtx has been a return of a running, dripping nose and the calves of my legs are huring in the evenings. Somewhat disturbing. Any thoughts? Is my 3 week remission over? History?

[Rose]

I would have it checked out. i actually flared during my cyclophosphamide IV infusions. I had had 4 cyclphosphamide infusions at monthly intervals when symptoms returned...constant running nose etc. it was spring in South Africa and the doctor at first thought it might be an allergy. I was 58 and had never suffered allergies before so she decided to do an ANCA test and was so surprised when it returned positive. It was positive before treatment and negative 3 months into treatment. I had another ANCA a few months later and it was again negative. Haven't had one since as i feel fairly confident that my body will let me know when I am flaring. Running nose and roving muscle and joint pain would have me giving my doctor a call!

[Psyborg]

Gotta agree with Rose, I'd at least ask your doctor to confirm if it isn't a flare. It could be allergies of course, but better safe than sorry I'd say.

[Sangye]

Yup, I agree as well. If it is a flare, the sooner you get on it the easier it is to treat it. You might only need to go back on the last dose of mtx you were on. I know it's not great, but it's better than going through the whole treatment again.

[manalolana]

Hi Rose,
How do you get an ANCA test? Is this blood test?

[drz]

Hi Rose,
How do you get an ANCA test? Is this blood test?
Yes, it is usually done with one of regular blood draws for routine lab work. It does need to be sent to special lab though as not many labs are equipped to run this test. Thus it takes a little longer to get the results. Places like the Mayo Clinic or other vasculitis specialty centers can run this test in house.

[JanW]

I'd get it checked out vdub. I remember your fast taper because we started at the same time. I'm still on 7.5 mg for 4 more weeks then down to 5 mg until I get my nose surgery in December, hopefully.

[elephant]

Jan will the docs keep you on 5mg when you have your surgery? Will the up the prednisone a little bit after surgery? Is the plan to get you completely off the prednisone?

[Rose]

Yes Manalolana It is a blood test which looks for specific antibodies found in most people (not all) with active Wegener's . It is not diagnostic but does support a diagnosis and also is helpful to confirm a flare. You must google it as there is a lot of articles which can explain it better than I.

[vdub]

Thanks all... Right arm is hurting today. Nose is still running....

For some reason I'm not getting notifications of messages posted to the forum. Gotta check into that.....

[gwenllian111]

I hope you feel better soon. Trust your instincts, you know your body better than anyone else.
Gwen X

[manalolana]

Sorry you are not doing so well vdub!

[manalolana]

Mahalo DrZ!


Yes, it is usually done with one of regular blood draws for routine lab work. It does need to be sent to special lab though as not many labs are equipped to run this test. Thus it takes a little longer to get the results. Places like the Mayo Clinic or other vasculitis specialty centers can run this test in house.

[manalolana]

Mahalo Rose!


Yes Manalolana It is a blood test which looks for specific antibodies found in most people (not all) with active Wegener's . It is not diagnostic but does support a diagnosis and also is helpful to confirm a flare. You must google it as there is a lot of articles which can explain it better than I.

[JanW]

I'm not on any pred, Elephant, and never have been. The plan is 2 mg of mtx at surgery, and then evaluate after that. Will try to get all of the way off if possible. There has recently been a big drop in my PR3 to the lowest level since dx, and we don't know what to make of that, because like ANCA he doesn't consider it a strong indicator of disease activity for me.

[vdub]

Had all the typical blood tests today; ESR, CMP, Bio free, etc, etc. The normal half dozen tests are either high out of range or low out of range. Nothing to get excited about. Also had a PSA, but the results of that aren't back yet..... Nice to be in a small town where you get most of the your test results back in less than an hour.....