Vegemite
12-24-2013, 06:14 PM
Hi everyone, finally found my way to this forum after seeing a link on one of the Vasculitis facebook pages. I am from Canberra, Australia, and was diagnosed with Wegener's about 8 weeks ago. At this stage I have kidney, sinus and ear involvement (nothing in my lungs apparently) and I have had four doses of rituximab since my admission to hospital and diagnosis.
My symptoms started as severe joint pain that migrated around my body when I was 28 weeks pregnant (a bit over one year ago). I would wake up some mornings with joints completely seized up, severe pain on movement, swelling, redness and heat. Being pregnant there was not a lot I could take apart from basic painkillers. My obstetrician tested me for rheumatoid arthritis and a few other things and that all came back negative, the only thing that was unusual was higher than normal inflammation markers. Once my little girl was born (Feb 2013), the joints settled down a bit but then I started getting every cold / flu that was going around. I would be well for a week and then be sick for 2 - 3 weeks with a cold that I could not shake. This went on for a few months and then the joints started flaring up again.
I saw a rheumatologist pretty quickly (my GP has been brilliant and rang the rheumatologist to get my in very quickly) and she was perplexed as to what was causing the joint issues. She did some further testing (lupus, rheumatoid again etc) again it all came back negative. She initially put me on ibuprofen 400mg 3 times a day to help the joints and wanted to see if things settled down. In the mean time, the colds / flus continued and I ended up with an ear infection that would not clear up. I had 3 doses of antibiotics, none of which helped and I ended up in hospital with severe vertigo from the build up of fluid and pressure in my ear. I had a grommet put in my ear and the fluid drained (plus some high dose steroids) and I thought I was back on track to good health. I went home after 4 days in hospital and felt great. I saw my rhumatologist just after I got out of hospital and she did not think there was any link to my joint issues and the ear issues so just continued me on the ibuprofen but gave me a script for 5mg of prednisilone in case my joints flared again. Then things got interesting!
When I was in hospital I was initially admitted under a neurologist as the ear infection had caused a facial palsy (which has subsequently fully resolved). He happened to have a good look in my eyes while I was admitted and he noticed things did not look right so referred me to the eye clinic at the hospital. I went to the eye clinic a few weeks after my admission and they did a number of tests. This was a scary appointment as the Dr I was seeing realised something was not right very quickly and then started a procession of other eye Drs in to see me. They all kept asking me if I had a headache and if my vision was funny (which it had been a little bit but we put that down to the vertigo from the ear infection). They re-ran a particular test that tested the pressure in the back of my eyes and it kept saying the pressure was over 300 in each eye (normal pressure is apparently 100 so 300 was extreme). I started to get very panicky after 3 eye Drs had come in to see me and all looked very concerned and then when they said they were ringing their boss, the head of department who was on leave at the time to come in, my blood pressure went through the roof and i started to panic. The head of the department came in to the hospital and did all the tests again and said we need to get a lumbar puncture for you ASAP as the pressure is extreme and it may start having irreversible effects on your eyes. She also gave me a pathology form for more tests and included on this was the one thing no one else had tested me for - ANCA! I also had to do a 24 hour urine test.
In the mean time, my joints had flared really badly and I was in severe pain, barely managing to look after my bub some days as I could not move and could not hold her / nurse her. I was spending the days on the lounge sleeping. It was at this point I was also 8kgs below my pre baby weight which was a huge shock as I have PCOS and have always had trouble losing any weight so to lose weight so easily and quickly (I put on over 20kgs while pregnant) was a shock that we intially thought was because I was breastfeeding.
So about 2 weeks later I was booked in for the lumbar puncture and I had the blood taken for the tests a few days before the puncture. My rhuematologist got the blood test results late on a Friday and rang me about 7pm on a Friday night to say I think we know what it is - you have tested positive for ANCA and you need to get in to see a kidney specialist ASAP. She also said the usual treatment for this disease will make you infertile so you may want to talk with your husband about freezing eggs now in case you want to have more children. Talk about a double whammy of things to take in all at once! This was the first time I had ever heard of vasculitis and wegener's so that weekend was spent googling everything I could find. Things started to come together when I read the symptoms but I still thought to myself, I don't have a disease, I am just run down and sick from having a baby. How wrong I was!
I had the lumbar puncture on the Wednesday of the following week and they drained a significant amount of fluid out to relieve the pressure on my eyes. They tested the fluid and it also tested positive for ANCA. I managed to get in to see a kidney specialist at the hospital on the Friday of the same week but was in a very bad way. The post lumbar puncture headache was severe and I had been laying flat from Thursday morning as that was the only thing that relieved the headache. When the kidney Dr saw me on the Friday morning, saw the state I was in with the headache, looked at my blood and urine tests, he said you are not going home today, you are having a kidney biopsy this afternoon as it looks like you have very active wegener's right now and we need to get it under control as it is damaging your kidneys (blood in urine, urea and creatinine very high).
That afternoon I went for the kidney biopsy and they got the results very quickly (they had a pathologist in the room while the Dr was doing it looking at the samples) and then late on the Friday evening the kidney Dr came and said we are goign to start treatment straight away. I said to him do we not have time to freeze eggs and he said no but I am seeking approval from the big hospital bosses to use Rituximab instead of cyclophosphamide given your age and stage in life. He mentioned at this point it would cost the hospital (AKA the Australian tax payer) around $15,000 but he was very confident it would not be an issue given the urgency to get it started and my situation.
So with the positive ANCA and kidney biopsy results, I was officially diagnosed with wegener's and started my first infusion of rituximab the following day. It wasn't smooth sailing though as I had a reaction a few hours in to it and they had to stop the infusion and then try again teh following day over 12 hours. Each infusion after that went off without a hitch (3 further infusions over 3 weeks) with the only issue getting a cannula in me each. I have been on 50mg of prednisilone since discharge and had an IV dose of cortisone before each rituximab infusion.
I had my last rituximab infusion on 27 November and since then, all the tests are indicating I am heading to remission. I saw my kidney Dr just last week and the ANCA has gone right down and the thing he was most happy with was my CRP had gone from 25 when I was in hospital to 0.9 indicating next to no inflammation :) He has started to wean me off the prednisilone (thankfully as I have put on 9kg in 7 weeks cause I can't stop eating!) so I am down to 37.5mg with the aim to be down to 10mg by the beginning of Feb. Overall he is really really happy with how things have gone. I also saw the eye Dr and she re-ran the pressure tests on my eyes and one eye is almost back to normal, the other has a little way to go but again she is very happy with my progress. I am certainly feeling more like my old self, no joint issues at all, only a few little issues with my ear that has the grommet in it, I am not as tired and I am actually managing to do stuff during the day now.
So that is my very long and detailed story of how I have ended up here. It has certainly helped me to write it all down and get it sorted in my head. I still have a lot to learn about this disease so I am really looking forward to getting to know you all.
And finally..... Merry Christmas and a Happy New Year!!! May 2014 bring you all better health.
My symptoms started as severe joint pain that migrated around my body when I was 28 weeks pregnant (a bit over one year ago). I would wake up some mornings with joints completely seized up, severe pain on movement, swelling, redness and heat. Being pregnant there was not a lot I could take apart from basic painkillers. My obstetrician tested me for rheumatoid arthritis and a few other things and that all came back negative, the only thing that was unusual was higher than normal inflammation markers. Once my little girl was born (Feb 2013), the joints settled down a bit but then I started getting every cold / flu that was going around. I would be well for a week and then be sick for 2 - 3 weeks with a cold that I could not shake. This went on for a few months and then the joints started flaring up again.
I saw a rheumatologist pretty quickly (my GP has been brilliant and rang the rheumatologist to get my in very quickly) and she was perplexed as to what was causing the joint issues. She did some further testing (lupus, rheumatoid again etc) again it all came back negative. She initially put me on ibuprofen 400mg 3 times a day to help the joints and wanted to see if things settled down. In the mean time, the colds / flus continued and I ended up with an ear infection that would not clear up. I had 3 doses of antibiotics, none of which helped and I ended up in hospital with severe vertigo from the build up of fluid and pressure in my ear. I had a grommet put in my ear and the fluid drained (plus some high dose steroids) and I thought I was back on track to good health. I went home after 4 days in hospital and felt great. I saw my rhumatologist just after I got out of hospital and she did not think there was any link to my joint issues and the ear issues so just continued me on the ibuprofen but gave me a script for 5mg of prednisilone in case my joints flared again. Then things got interesting!
When I was in hospital I was initially admitted under a neurologist as the ear infection had caused a facial palsy (which has subsequently fully resolved). He happened to have a good look in my eyes while I was admitted and he noticed things did not look right so referred me to the eye clinic at the hospital. I went to the eye clinic a few weeks after my admission and they did a number of tests. This was a scary appointment as the Dr I was seeing realised something was not right very quickly and then started a procession of other eye Drs in to see me. They all kept asking me if I had a headache and if my vision was funny (which it had been a little bit but we put that down to the vertigo from the ear infection). They re-ran a particular test that tested the pressure in the back of my eyes and it kept saying the pressure was over 300 in each eye (normal pressure is apparently 100 so 300 was extreme). I started to get very panicky after 3 eye Drs had come in to see me and all looked very concerned and then when they said they were ringing their boss, the head of department who was on leave at the time to come in, my blood pressure went through the roof and i started to panic. The head of the department came in to the hospital and did all the tests again and said we need to get a lumbar puncture for you ASAP as the pressure is extreme and it may start having irreversible effects on your eyes. She also gave me a pathology form for more tests and included on this was the one thing no one else had tested me for - ANCA! I also had to do a 24 hour urine test.
In the mean time, my joints had flared really badly and I was in severe pain, barely managing to look after my bub some days as I could not move and could not hold her / nurse her. I was spending the days on the lounge sleeping. It was at this point I was also 8kgs below my pre baby weight which was a huge shock as I have PCOS and have always had trouble losing any weight so to lose weight so easily and quickly (I put on over 20kgs while pregnant) was a shock that we intially thought was because I was breastfeeding.
So about 2 weeks later I was booked in for the lumbar puncture and I had the blood taken for the tests a few days before the puncture. My rhuematologist got the blood test results late on a Friday and rang me about 7pm on a Friday night to say I think we know what it is - you have tested positive for ANCA and you need to get in to see a kidney specialist ASAP. She also said the usual treatment for this disease will make you infertile so you may want to talk with your husband about freezing eggs now in case you want to have more children. Talk about a double whammy of things to take in all at once! This was the first time I had ever heard of vasculitis and wegener's so that weekend was spent googling everything I could find. Things started to come together when I read the symptoms but I still thought to myself, I don't have a disease, I am just run down and sick from having a baby. How wrong I was!
I had the lumbar puncture on the Wednesday of the following week and they drained a significant amount of fluid out to relieve the pressure on my eyes. They tested the fluid and it also tested positive for ANCA. I managed to get in to see a kidney specialist at the hospital on the Friday of the same week but was in a very bad way. The post lumbar puncture headache was severe and I had been laying flat from Thursday morning as that was the only thing that relieved the headache. When the kidney Dr saw me on the Friday morning, saw the state I was in with the headache, looked at my blood and urine tests, he said you are not going home today, you are having a kidney biopsy this afternoon as it looks like you have very active wegener's right now and we need to get it under control as it is damaging your kidneys (blood in urine, urea and creatinine very high).
That afternoon I went for the kidney biopsy and they got the results very quickly (they had a pathologist in the room while the Dr was doing it looking at the samples) and then late on the Friday evening the kidney Dr came and said we are goign to start treatment straight away. I said to him do we not have time to freeze eggs and he said no but I am seeking approval from the big hospital bosses to use Rituximab instead of cyclophosphamide given your age and stage in life. He mentioned at this point it would cost the hospital (AKA the Australian tax payer) around $15,000 but he was very confident it would not be an issue given the urgency to get it started and my situation.
So with the positive ANCA and kidney biopsy results, I was officially diagnosed with wegener's and started my first infusion of rituximab the following day. It wasn't smooth sailing though as I had a reaction a few hours in to it and they had to stop the infusion and then try again teh following day over 12 hours. Each infusion after that went off without a hitch (3 further infusions over 3 weeks) with the only issue getting a cannula in me each. I have been on 50mg of prednisilone since discharge and had an IV dose of cortisone before each rituximab infusion.
I had my last rituximab infusion on 27 November and since then, all the tests are indicating I am heading to remission. I saw my kidney Dr just last week and the ANCA has gone right down and the thing he was most happy with was my CRP had gone from 25 when I was in hospital to 0.9 indicating next to no inflammation :) He has started to wean me off the prednisilone (thankfully as I have put on 9kg in 7 weeks cause I can't stop eating!) so I am down to 37.5mg with the aim to be down to 10mg by the beginning of Feb. Overall he is really really happy with how things have gone. I also saw the eye Dr and she re-ran the pressure tests on my eyes and one eye is almost back to normal, the other has a little way to go but again she is very happy with my progress. I am certainly feeling more like my old self, no joint issues at all, only a few little issues with my ear that has the grommet in it, I am not as tired and I am actually managing to do stuff during the day now.
So that is my very long and detailed story of how I have ended up here. It has certainly helped me to write it all down and get it sorted in my head. I still have a lot to learn about this disease so I am really looking forward to getting to know you all.
And finally..... Merry Christmas and a Happy New Year!!! May 2014 bring you all better health.