How to know when you're having a flare

[cjhnsn29]

How long did it take to get your ANCA and SED rate down?

[mrtmeo]

If u have any kidney involvment, using Hemastix to check for blood in the urine will tell u if u r in a flare.

[cjhnsn29]

Summer,

My old symptoms came back mostly with my sinuse where it all begins for me. I had a new development where I was having chest pain went to hospital became anemia and had to get two pints of blood given to me in Ivs. It just hit me all at once. I see my Dr every month thats how fast it came. Just keep track of symptoms and tell your Dr.

CJ

[Glenda]

Hello there, I have just joined this forum to see what I can find out about WG. Like you I was diagnosed in February of this year, and like you am still having a lot of trouble. My kidney function ranges between 20 to 40%, I have pain in my joints, have trouble with my sinuses, have headaches constantly (sometimes a dull ache but generally quite bad), constantly tired, feel nauseated and feel terrible most of the time. I see my Drs (nephrologist and GP) both monthly or more ofter if they call me in (due to decreasing blood results). I have weekly blood tests. Am on 25mg prednisone, have had 3 months of cyclophosphamide IV, and am on so many BP medications and still have high blood pressure. I always feel I am complaining when the Drs ask how am I. I have had to resign from work as I am so tired, weak and lack any energy. My condition is still not under control.
I am so sorry you have had to go through all this, but for me it is nice to think all my symptoms are common to people with WG, and I am not alone.
Hope you start to feel better soon.

[Rose]

Hi Glenda

Sorry you had to find us but glad you did. Here you will find a welcome and a real understanding of what you have gone/ going through. We have all travelled that road, most of us have thankfully improved and willing to share our experiences as to what has helped us in our fight with WG so please never hesitate to ask questions.

Sorry you have not responded to treatment How long ago did you have the cyclophosphamide IV? How long have you been on 25mg prednisone? When I was diagnosed with kidney (38%) lung, hearing, joint and GI involvement, I was told that I had to have 6 months of IV Cylophosphamide. I responded so well that after the 3rd or 4th IV treatment I went into remission. The doctors were very pleased but refused to stop the treatment protocol of 6 infusions for reason "to hit it hard". I was also on high doses of prednisone during this time.....I received Solumedrol 1000mgs IV x3 before the cyclophospamide, then 80mgs for about 2 weeks then reducing about 10 mgs a month as my bloods improved.

This was in 2008. Since January 2009 I have been on Cellcept 1.5g. which has maintained remission though I have had a few minor flares. I am not the person I was before I got ill. Very few of us, if any, will return to our pre WG healthy selves but if the treatment is successful, many of us accept our new norm with its limitations and get on with life as best we can and just grateful that we are still around.

The fact that you haven't responded raises a few questions with me

1) Were you long enough on IV Cyclophosphamide?
2) Did you have IV Solumedrol? Have you been on higher doses of prednisone?
3) If your doctors feel you have received enough cyclophosphamide and you have not responded have they discussed other treatment options with you?
4) How much experience has your doctor had treating WG?

Finding an experienced doctor is difficult as there are so few of us around but a Rheumatologist has the most experience in autoimmune conditions. You will probably need a few specialist on your team including a nephrologist but most people have a Rhumy in charge managing the monitoring and arranging consults with other specialists when required. I am sure some of the Australian members will chip in here with some suggestions.

Your post could be lost in this thread. I suggest you cut and paste it on to "new members introductions"

Wishing you all the best. Hope you will get some relief from those terrible symptoms soon.

Rose

[Glenda]

Hi there Rose, thankyou for replying. I have posted this onto the New Members site as you suggested. In response to your questions: I commenced IV Cyclophosphamide in May and had it for 3 months. I was constat\ntly vomiting during this time. No I didn't have IV Solumedrol (I don't know what this is). I was first commenced on 60mg of Prednisone and stayed on this for 4 months before gradually decreasing down to 15mg, but as the kidney function deteriorated again was put back up to 25mg and there I have stayed. The Dr wants to keep doing Kidney biopsies, but as I have a large internal bleed from the last one, I am reluctant to have another one. I don't know how much experience my Physician has with WG, but when I first got sick I have 5 Physicians coming to see me each day in hospital (I was an unusual case apparently). I don't live in a city. My Dr has talked about more Cyclophosphamide, but stated that this has the risk of causing cancer. He has also talked about methotrexate, but has decided to just watch and wait. In the meantime I have weekly blood tests. I was iron deficient after the bleed, so have had and IV Iron infusion only 3 weeks ago. My Hb is now up to 100 (still anaemic). I have a lot of pain in the joints, sinuses and headaches, but am not allowed to take anything other than paracetamol as other tablets are excreted by the kidneys. I just feel so down, tired and depressed all the time, I am sick of myself. I had to give up work which I loved, and was not prepared to leave, but my brain has been affected and it could be dangerous to others if I kept working. It is so wonderful to read stories from others that have gone through this and understand. You are all a ray of sunshine for me.

[mrtmeo]

Hi there Rose, thankyou for replying. I have posted this onto the New Members site as you suggested. In response to your questions: I commenced IV Cyclophosphamide in May and had it for 3 months. I was constat\ntly vomiting during this time. No I didn't have IV Solumedrol (I don't know what this is). I was first commenced on 60mg of Prednisone and stayed on this for 4 months before gradually decreasing down to 15mg, but as the kidney function deteriorated again was put back up to 25mg and there I have stayed. The Dr wants to keep doing Kidney biopsies, but as I have a large internal bleed from the last one, I am reluctant to have another one. I don't know how much experience my Physician has with WG, but when I first got sick I have 5 Physicians coming to see me each day in hospital (I was an unusual case apparently). I don't live in a city. My Dr has talked about more Cyclophosphamide, but stated that this has the risk of causing cancer. He has also talked about methotrexate, but has decided to just watch and wait. In the meantime I have weekly blood tests. I was iron deficient after the bleed, so have had and IV Iron infusion only 3 weeks ago. My Hb is now up to 100 (still anaemic). I have a lot of pain in the joints, sinuses and headaches, but am not allowed to take anything other than paracetamol as other tablets are excreted by the kidneys. I just feel so down, tired and depressed all the time, I am sick of myself. I had to give up work which I loved, and was not prepared to leave, but my brain has been affected and it could be dangerous to others if I kept working. It is so wonderful to read stories from others that have gone through this and understand. You are all a ray of sunshine for me.

Hi Glenda,
Have you considered Rituximab?
Many weg's folks find it really helps when ctx doesn't.
Here is testimony from Kathy Messinger at the Vasculitis Foundation
https://www.youtube.com/watch?v=aNQ6...B2048&index=39

[daystarr8]

Glenda..... Rose is giving you great advice. I'm a 34 year veteran and I have had many long periods fighting but hopefully soon your body will respond. Like Rose said make sure your dr knows what treatment is best for you. Maybe try something else. I know one gal didn't respond to the cyclophosphamide but did great on ritux. Hopefully you will get some relief soon. I had all the same symptoms too but doing ok now. Best to you

[Glenda]

Hi there again everyone, I was wondering if someone could answer my questions please. Does WG cause anaemia and low Feritin levels? I have been anaemic since my last kidney biopsy in May when I had a large internal bleed. Then my Feritin levels dropped to 4. I have had an iron infusion, and the levels have improved, but as my Hb comes up the iron levels are slowly decreasing. My Dr is talking about an endoscopy to see if I am bleeding from the bowel, but have had faecal studies x 3 all of which are negative for blood. The second question is does anyone know of a Dr that treats WG on the eastern side of Australia, preferable in New South Wales? I feel this WG may be a little out of my Drs scope of practice, although he is trying really hard to help me. He just seems to worry about the renal function, and dismisses all the other symptoms I have as if they are nothing. I have even had bouts of heart arrhythmias, missing every 3 to 5 beats, but he just says it is quite normal. Thankyou everyone

[daystarr8]

Hi Glenda
When I was on treatment for a pretty serious flare with kidney involvement. I too had low iron. I took iron daily for
Many years. I was a young girl at that time and don't know if it was the treatment medication or if it was from other complications. I do know that I have not needed iron in years and years but my kidneys have not had any problems since initial diagnosis. As far as anemia. That could be from cyclophosphamide if you are on that or any other immunosuppressive meds. But if you are bleeding somewhere both can be a sign. As for your heart. If you are on steroids they can cause palpitations increased heart rate, and high blood pressure. High blood pressure alone can cause your heart to be irritable and create extra heart beats. I'm a cardio tech for 23 yrs. if you are dropping that many beats you would feel like passing out. My guess is you are having extra beats that come early in the heart cycle then there is a tiny pause when the normal rhythm restarts. It can feel like skipped beats but most cases is just extra ones. Have your doctor order a holter monitor for 24 hours to see what's going on it's an easy test with good answers. As for locating the right doctor.... It's a must. I'm in USA so I can't help you there. I hope I've helped you where I can. Best to you.