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Dorothea
10-18-2014, 06:07 PM
I was diagnosed with Wegeners a year ago today. (10/18/13) Does anyone know how long it can take to go into remission? I'm on Methotrexate (2.5mg.) 8 tablets once a week.

Rose
10-18-2014, 07:24 PM
Hi Dorothea

Although everyone responds differently to treatment and some can go into remission faster than others, i would have thought that by after a year of the same treatment you should be in remission or some degree of remission. Is your condition improving? If there has been no improvement then the doctors should consider other treatment options.

Rose

gilders
10-18-2014, 08:46 PM
Hi Dorothea,
As Rose said, people respond to treatment and go in to remission quicker than others.
I've always had quite severe relapses (i.e. flares up quickly and involves kidneys), but fortunately the treatment has managed to get me in remission fairly quickly (a few months at a guess).
That was until my latest (current) relapse. I started treatment a year ago and don't believe I'm in remission yet. My replacement Dr thinks I am, but I have all the tell tale symptoms that show other wise.
I also agree that if there's been no improvement within 12 months then another form of treatment has to be considered.

annekat
10-18-2014, 10:51 PM
"Remission" is hard to define, as when many of us think we may be in it, we may have a little flare or so, if we get under a little stress or try to taper our meds. But I agree with the others that after a year you should have seen some solid improvement in your symptoms and your energy levels; otherwise you may need stronger treatment. Knowing you are on MTX makes me think you may have mainly sinus/nose/ear issues, or what some have called "limited" Wegeners, though we don't like to use that term much because it minimizes the potential severity and seriousness of what you have. Sinus involvement over a period of time can cause a lot of damage, such as erosion of the thin sinus bones and permanent eustachian tube dysfunction, and the symptoms may continue due to some of this damage and make you feel like you aren't in remission or progressing well, when your lab results may show a lot of improvement. I hope that helps.

BTW, your dose of MTX is a pretty good one; mine is only 15mg./wk vs your 20mg/wk. I was at only 10mg. for awhile which proved to be too little, and the 15mg. has held me pretty steady except for moderate flaring in the winter which was controlled by an increase in pred. So after 3.5 years, although I feel much better overall and sometimes almost "normal", and my labs are not bad, I still cannot say I'm in remission. Stress has a lot to do with it, I think, and those with an easygoing lifestyle who don't have to work too hard to make ends meet will have an easier time reaching remission.

Dorothea
10-19-2014, 06:56 AM
Thank you all for responding. I was on prednisone for 6 months. (My doctor doesn't want people on it for long periods of time) You're right, Wegeners started in my sinuses and I had to have tubes put in my ears last year also.I'm having issues with blood in my urine now. I'm really glad I found you guys! Sometimes I do feel alone in this battle, I think my grown kids don't think there's anything wrong with me. And one of them is an RN! I guess mom's aren't supposed to get sick.Lol!! Thanks again for responding! Have a pain free day!😊

Pete
10-19-2014, 07:08 AM
Hi Dorothea,

Blood in the urine can be a symptom of kidney involvement. Is the doctor treating your disease a specialist in Vasculitis? If not, finding one would probably provide treatment that leads to remission. You can search for specialists at the Vasculitis Foundation's website. Looks like you're about midway between Cleveland Clinic (where I go) and Mayo Clinic.

Good luck!

Dorothea
10-19-2014, 07:13 AM
Hi Pete, I have a Rheumatologist that specializes in autoimmune diseases.

Dorothea
10-19-2014, 07:17 AM
Pete, how long have you had kidney involvement?

MikeG-2012
10-19-2014, 07:52 AM
I was diagnosed with Wegeners a year ago today. (10/18/13) Does anyone know how long it can take to go into remission? I'm on Methotrexate (2.5mg.) 8 tablets once a week.

I think remission is like a lot of other factors with this disease. One of my docs told me once, "There isn't a book to tell us about Wegeners, every patient writes his/her own book."

Dorothea
10-19-2014, 08:19 AM
Thanks Mike G-2012 for the great insight!

Rose
10-19-2014, 08:32 AM
Hi Dorothea

What is your doctor saying and doing about the blood in your urine?

Rose

Dorothea
10-19-2014, 08:45 AM
I have an appointment on December 3rd. . He said we will discuss it then. I'm guessing it must not be that serious. :confused:

Dorothea
10-19-2014, 08:52 AM
Rose, Where can I get the strips to check for blood in my urine?

renidrag
10-19-2014, 08:57 AM
You must tell your Doctor about the blood and request an earlier appointment, like tomorrow, definitely Monday. Don't go over a month without being seen even if you have to go to the ER.
Dale

Dorothea
10-19-2014, 09:01 AM
Dale, my rheumatologist is the one that told me about the blood in my urine. And said we would discuss at my next appointment

Dorothea
10-19-2014, 09:04 AM
Can someone please tell me where I can find the strips to test my urine for blood? I would deeply appreciate it.

mrtmeo
10-19-2014, 09:17 AM
I bought these because they show protein and blood in the urine.
I think you can get them by prescription from a dr, but my neph wouldn't give me one, so I bought my own.

Urinalysis Reagent Strips 10 (http://www.meditests.com/urinalysis-strip.html?utm_source=googlepepla&utm_medium=adwords&id=18283950120&gclid=CNil0qqdt8ECFYxDMgodJzoAJA)

Rose
10-19-2014, 09:39 AM
You must tell your Doctor about the blood and request an earlier appointment, like tomorrow, definitely Monday. Don't go over a month without being seen even if you have to go to the ER.
Dale.

I agree here. You must get this investigated asap. Should it be WG attacking your kidneys you need effective treatment yesterday as kidney function can deteriorate very quickly. You cannot wait until December. Blood in your urine is serious until told otherwise. I have never had macroscopic blood (visible to the naked eye) only microscopic like you and no kidney symptoms but I had stage 3 kidney failure on diagnosis.

I get my strips on the internet though I think you should be able to buy them from your pharmacy.

Rose

Dorothea
10-19-2014, 11:59 AM
Thanks again Rose! One more thing, what are they called?

Pete
10-19-2014, 12:07 PM
Pete, how long have you had kidney involvement?

I had the beginning of it about a year ago. I had two infusions of rituximab, restarted pred at 60 mg/day, and maintained 20 mg/wk of methotrexate. It took about two months for labs to return to normal. I was off pred for about four months when I started having roaming joint pain. My labs showed small amounts of blood in urine shortly after.

Dorothea
10-19-2014, 12:11 PM
Thanks again Pete!

Rose
10-19-2014, 05:40 PM
hi Dorothea

if you google 'urine testing strips' you will find something, I get mine from Salamander Concepts, a company here in South Africa. I know they do sell them to other countries though sure there must be U S sites where u can buy them. Just make sure they test for blood and protein,

Rose

annekat
10-19-2014, 06:19 PM
I asked at my local Rite Aid pharmacy a couple years ago and they had them, but not on the shelves, you had to ask for them at the counter. They were something like $30, not sure, and I couldn't spend the money right then, and haven't followed through on it since. If prescriptions are available for them, I imagine the price would be a lot lower on a typical health or drug plan.

Pete
10-20-2014, 12:11 AM
You can buy hemastix on Amazon. There are two kinds - one that just tests for blood, and another that can test for several substances. I don't recall the price, but I didn't think they were very expensive.

Rose
10-20-2014, 12:42 AM
Hi Dorothea

I was just wondering if your doctor did any blood test for kidney function when blood was found in your urine? Microscopic blood was found in my urine a few times over the 17 years I went undiagnosed. It seemed to come and go and so nothing was done. I know now that it was smouldering WG.

Rose

Dorothea
10-28-2014, 08:33 AM
mrtmeo, I ordered the same strips. My urine part was a dark green.I know that signifies blood in urine. What color green do you think I should contact my specialist?

vdub
10-28-2014, 08:47 AM
You should at least call your doc and let him know. They might order additional lab tests, schedule an appt, or do nothing, but they should be made aware.

Dorothea
10-28-2014, 08:50 AM
Thank You vdub

vdub
10-28-2014, 09:05 AM
How often are you scheduled for routine blood tests? I think most of us are getting blood tests about every 2 or 3 months. Often they want CMP with urine/micro. You can google CMP. One of things the CMP tests is kidney function. Results for a CMP only take a couple hours, so are quite quick. However, depending on how your hospital is set up, it could take longer. At any rate, your doc should be made aware of any blood in your urine.

mrtmeo
10-28-2014, 10:45 AM
Please get treatment quickly because when the kidneys are involved, they fail quickly.
If your rheumy doesn't act on this, maybe look into a nephrologist or contact the vasculitis foundation for a physician knowledgeable in wegs.
Vasculitis Foundation (http://www.vasculitisfoundation.org/)

mrtmeo
10-28-2014, 10:48 AM
mrtmeo, I ordered the same strips. My urine part was a dark green.I know that signifies blood in urine. What color green do you think I should contact my specialist?

I would contact the dr when ever there is any blood, so that he/she can do a urinalysis to determine if wegs is active.
Please don't wait on it because it is best to be safe than sorry.
I believe the dark green is ++ trace blood, but not sure.

Wegetarian
10-31-2014, 02:48 AM
I would contact the dr when ever there is any blood, so that he/she can do a urinalysis to determine if wegs is active.
Please don't wait on it because it is best to be safe than sorry.
I believe the dark green is ++ trace blood, but not sure.

I agree. Better safe than sorry, kidneys problems can be difficult to notice and can get worse quickly so no reason not to call the doc. Probably they will ask for lab tests to get more reliable results, but no reason to wait for a long time for an appointment.

I got my strips from Ebay.com, Amazon wouldn't sell pharmacy stuff abroad and was too lazy to check if I could get them locally.

Bek Stone
11-21-2014, 10:33 AM
Hi dorothea
I think its different for everyone I will have had WG for 6 yrs in February and im not in remission yet close to it but not quite but then I didn't respond to alot of the treatment until I had rtx

Ladyleeza77
01-26-2015, 03:22 PM
Hey gliders..
When you go into remission you mentioned flares up snd involves kidneys..how?? What are your symptoms? My son has had UTI symptoms on and off but comes up negative when they test him..they say his urine is just concentrated but i just dont believe it i feel it has to do with WG...please any info would help...thanks

mrtmeo
01-27-2015, 03:48 AM
It is important to check the urine for blood and protein.
If there are red blood cell casts, you have active disease going on in the kidneys.
Using urine dipsticks can let you know when to see the dr for a urinalysis.
Hemostix will check for blood, but you can get ones that check for blood and protein, such as Siemens Multistix 10 SG.
Siemens Multistix 10 SG Reagent Strips for Urinalysis Box of 100 - Diabetic Testing Supplies - Discount Diabetic Supplies - ADW Diabet (http://www.adwdiabetes.com/product/bayer-multistix-reagent-strips_1638.htm?source=GoogleBase&kpid=193216121&zmam=69792428&zmas=1&zmac=2&zmap=193216121&gclid=CJj-96iOssMCFQytaQodMFkAtg)

Marty B
01-27-2015, 05:51 AM
I had kidney involvement first in 2010 that they put me on Retuxan which put me in remission.. My kidney's function at 30% .... It came back and attacked my lungs, I'm back on Retuxan only IV at 4 weeks once a week with high doses of prednisone for several months to be weaned off that once my numbers tell my Rhuematolgist I'm back in remission...

Ladyleeza77
01-27-2015, 06:01 AM
Thanks for all the info..this forum is really great..ive learned and got more info on here than since ive joined!