KimH
10-13-2011, 03:54 AM
Hello everyone and thank you Andrew! I have been reading the posts on this site for a few months and have been composing this post for sometime during those sleepless prednisone and night sweats filled nights. I have also had so many conversations with so many of you that if anyone has heard voices it was probably me.:rolleyes1:
I was diagnosed in Dec 2010. I had had a crummy summer with sensativity to the cold and sun. I had all kinds of symptoms like fatigue, diarrhea, hot flashes, hair thinning, etc. At first my dr. thought it was perimenopause..after all..I was that age. I googled symtoms of memopause and found a site that list 35 symtpoms..I decided that was me since I had them all. I went to the OB/GYN, had a check up and some blood work..all was fine. Also my thyroid was checked..all kinds of different tests..Normal. That was August. I felt a bit better in Sept but by Oct I was getting my usual sinus head aches. I had been diagnosed with Vasomotor Rhinitis and had had sinus surgery in 2001. My ENT scoped me often, I had routine blood work for check ups from my GP and nothing ever lead them to suspect Wegener. I had had headaches since the 80's.
In Oct my headaches were everyday but some were gone soon after I got up. I used Nasacort and steam to help my head hoping it would go away after the autumn allergy season was gone. By Nov I started to cough and went back to my GP. He gave me a Z-pack. After finishing that the coughing was worse and I was exhausted. So we tried Levaquin for a few days. (At that time I was allergic to Augmentin and Clindamycin). The Levaquin made me dizzy so that was added to my do not take list. I was also getting night sweats and a low grade fever. By coincidence I was scheduled for my annual physical and had my blood work done. The next day my GP called me and he was floored at my horrible blood work, my SED rate was 126. He told me he thought this could be Wegner's, he had already set up a sinus CT, chest x-ray, more blood work, an appt at the ENT and called the Rhuemy. The next day te rhuemy called in some Batctrim DS and prenisone and I was to see him on monday. That day was friday. The sinus CT showed that my right spheniod sinus was socked in. Surgery was scheduled for Dec 16th. The drs wanted to get in and get the biopsy as that was an important piece of the dx for wegeners. Luckily for me my lungs were clear.
My GP is also a pheulmy and is a smart guy to have figured this out so quickly. My kidneys were safe too. By the time I took my first dose of pred. I felt better. After surgery almost all of my clinical symptom resolved. The biopsy was negative. By the time I took my last dose of prenisone on Feb 16th all my blood work normalized. I had no symtoms of anything and felt great. At that time my dx was probable limited wegeners. I had to keep an eye on my symptoms.
Dec 2010 during my annual physical my GP found a goiter. (All my blood work was normal). I had a thryoid ultra sound and then a biopsy. I have a nontoxic multinodule goiter.
This Apr 2011 I noticed that my finger nails were peeling. I thought that is was from gardening but it was always in the back of my mind that it could mean something. My Rhuemy has taken care of my daughter for her Lupus for 17yrs and I recall he always checked her nails. hhhmmm. I did have a few headches but nothing bad at all. I thought this is spring and I do have tree allergies and I had been scoped by my ENT a short time ago and all looked good.
On Apr 18th I broke my ankle in 2 places. I mention that because that just added to the stressful time I was going through. My daughter, the one who has Lupus had gotten a kidney and was having a hard time adjusting, my husband who is a builder ran out of work and we had to cancel our health ins. STRESS! We had 2 sons getting married in May. I wonder if all the stress of that time caused me to flare.
By June my ears were closed. I had never had ear problems before. When I saw my GP he said my ear canals were swollen shut and he could not see my ear drums. We briefly discussed Wegeners but we agreed to try decongestants for a few days and see if it helps. My ears did open a bit and I was so busy into my summer I really didnt connect it to Wegeners. I had energy and felt fine. Not even headaches.
We had a huge party at our house on July 30th. I love parites but I do not drink and no matter how many ppl are there I sneak into bed as soon as possible. The next day I was beyond exhausted. I could barely clean up. That night I had night sweats but thought it was from the heat wave we were having. The next day July 31 I noticed my low grade temp. That was monday. I saw my GP on thursday, we discusse wegeners again but since I was otherwise feeling great we thought perhaps Lyme disease, I live in CT. He said if I am not feeling better in 3days to call him. Not better. We did one more Lyme test for babeisosis..that was neg. He called me and said it was time to check for the wegeners.
Chest xray clear, kidneys safe, but anemia, sed rate of 86 and I forget what my ANCA test said...maybe 17. My rhuemy was on vacation and his associate started me on prednisone 40 mg and had given me instructions to taper. I cannot take Bactrim anymore since I started to itch when I took it two yrs ago. By now I started to cough, ears closed up again, crusties in nose, arthritis in my neck, night sweats, low grade fever and fatigue. The hope was that since I responded so amazingly to just the pred last time that it would do the trick. I did take a Z pack and then some Ceftin. I had repeat blood work that showed some improvement but not enough. My rhuemy started me on 500mg Cellcept, 9/26, and was told to stay on the 20mg of pred. My coughing picked up and I was given yet another antiobiotic to take for 10 days. The night time coughing is gone, my nose is not bloody but has a few specks when I do blow my nose. My arthritis is gone. My nose does not feel swollen any more, it really is not stuffy any more and my post nasal drip is almost gone. I feel like I have much more energy. I hope this is a step in the right direction. My rhuemy said it might take a month on the Cellcept before my clinical symptoms go away.
I am scheduled for more blood work in mid november. I am to check in on Oct 24..thats 4 wks on the 500mg Cellcept. Of course I can call my rhuemy's office anytime with concerns. I still do have a low grade temp everyday..average 99.5F. The temp is in the mornings and sometimes I take two Ibuprofen. I was warned not to take Advil and be careful with the Ibuprofen. My night sweats are coming back and my ears are still full. Oh yes and there is the dry hacking cough during the day. It is worse when I talk. Hate that!
I have known my Rhuemy for 17yrs. It is because of him my daughter is still alive. She had an extreemly agressive case of pediatric Lupus. He referred her out to see other dr's many times. He also presented her case at Yale. We gave him permission to send her records to dr's at the NIH and Darthmouth. He never ever claimed to be all knowing. He has many Weggie patients. I have not yet had the time to discuss some of the Weggie docs that all of you see but I will. I KNOW he would not blink an eye to get me a second opinion.
All of my drs have been working with me now that I do not have health ins. I told them that I want to be well and please do not limit my treatment because of money. I will figure out a way to pay for what is happening right now.
I did see on someone's post about a list of info from Dr. Seo. Was that you Sangye? I think one of the items listed stated that sinus wegeners was tough to knock out. Is that correct? Could you please re-direct me to which post that was. I would like to share that info with my rhuemy.
I wish I knew if the Cellcept was working. I think so..maybe. After reading so many stories on this forum I am lucky to have a mild case of this wicked disease. I wonder about my ears. Sometimes they open so if I can hear better sometimes that means that my hearing is not toast..right? I dunno. The ENT said my eustation tubes were swollen. IS that what it is? I know when I saw my rhuemy on sept 26 we talked for an hour. His office is awful for waiting but once you get in he is all yours. I asked so many questions and dont remember all the answers. I could call him everyday but that would be crazy. It is hard to wait. Does it take a bit to see improvement? I dont see that too many ppl take cellcept. There were other option like Imuran and Rtx but my dr chose the cellcept. I know he explained it to me. What causes the night sweats? and fever? Inflamation of... the stuff in my head? What is the dry hacking cough from? I need to take better notes for my next visit. I will have so many questions of all of you as I try to make sense of this disease.
Thanks for welcoming me into your group! Kim
I was diagnosed in Dec 2010. I had had a crummy summer with sensativity to the cold and sun. I had all kinds of symptoms like fatigue, diarrhea, hot flashes, hair thinning, etc. At first my dr. thought it was perimenopause..after all..I was that age. I googled symtoms of memopause and found a site that list 35 symtpoms..I decided that was me since I had them all. I went to the OB/GYN, had a check up and some blood work..all was fine. Also my thyroid was checked..all kinds of different tests..Normal. That was August. I felt a bit better in Sept but by Oct I was getting my usual sinus head aches. I had been diagnosed with Vasomotor Rhinitis and had had sinus surgery in 2001. My ENT scoped me often, I had routine blood work for check ups from my GP and nothing ever lead them to suspect Wegener. I had had headaches since the 80's.
In Oct my headaches were everyday but some were gone soon after I got up. I used Nasacort and steam to help my head hoping it would go away after the autumn allergy season was gone. By Nov I started to cough and went back to my GP. He gave me a Z-pack. After finishing that the coughing was worse and I was exhausted. So we tried Levaquin for a few days. (At that time I was allergic to Augmentin and Clindamycin). The Levaquin made me dizzy so that was added to my do not take list. I was also getting night sweats and a low grade fever. By coincidence I was scheduled for my annual physical and had my blood work done. The next day my GP called me and he was floored at my horrible blood work, my SED rate was 126. He told me he thought this could be Wegner's, he had already set up a sinus CT, chest x-ray, more blood work, an appt at the ENT and called the Rhuemy. The next day te rhuemy called in some Batctrim DS and prenisone and I was to see him on monday. That day was friday. The sinus CT showed that my right spheniod sinus was socked in. Surgery was scheduled for Dec 16th. The drs wanted to get in and get the biopsy as that was an important piece of the dx for wegeners. Luckily for me my lungs were clear.
My GP is also a pheulmy and is a smart guy to have figured this out so quickly. My kidneys were safe too. By the time I took my first dose of pred. I felt better. After surgery almost all of my clinical symptom resolved. The biopsy was negative. By the time I took my last dose of prenisone on Feb 16th all my blood work normalized. I had no symtoms of anything and felt great. At that time my dx was probable limited wegeners. I had to keep an eye on my symptoms.
Dec 2010 during my annual physical my GP found a goiter. (All my blood work was normal). I had a thryoid ultra sound and then a biopsy. I have a nontoxic multinodule goiter.
This Apr 2011 I noticed that my finger nails were peeling. I thought that is was from gardening but it was always in the back of my mind that it could mean something. My Rhuemy has taken care of my daughter for her Lupus for 17yrs and I recall he always checked her nails. hhhmmm. I did have a few headches but nothing bad at all. I thought this is spring and I do have tree allergies and I had been scoped by my ENT a short time ago and all looked good.
On Apr 18th I broke my ankle in 2 places. I mention that because that just added to the stressful time I was going through. My daughter, the one who has Lupus had gotten a kidney and was having a hard time adjusting, my husband who is a builder ran out of work and we had to cancel our health ins. STRESS! We had 2 sons getting married in May. I wonder if all the stress of that time caused me to flare.
By June my ears were closed. I had never had ear problems before. When I saw my GP he said my ear canals were swollen shut and he could not see my ear drums. We briefly discussed Wegeners but we agreed to try decongestants for a few days and see if it helps. My ears did open a bit and I was so busy into my summer I really didnt connect it to Wegeners. I had energy and felt fine. Not even headaches.
We had a huge party at our house on July 30th. I love parites but I do not drink and no matter how many ppl are there I sneak into bed as soon as possible. The next day I was beyond exhausted. I could barely clean up. That night I had night sweats but thought it was from the heat wave we were having. The next day July 31 I noticed my low grade temp. That was monday. I saw my GP on thursday, we discusse wegeners again but since I was otherwise feeling great we thought perhaps Lyme disease, I live in CT. He said if I am not feeling better in 3days to call him. Not better. We did one more Lyme test for babeisosis..that was neg. He called me and said it was time to check for the wegeners.
Chest xray clear, kidneys safe, but anemia, sed rate of 86 and I forget what my ANCA test said...maybe 17. My rhuemy was on vacation and his associate started me on prednisone 40 mg and had given me instructions to taper. I cannot take Bactrim anymore since I started to itch when I took it two yrs ago. By now I started to cough, ears closed up again, crusties in nose, arthritis in my neck, night sweats, low grade fever and fatigue. The hope was that since I responded so amazingly to just the pred last time that it would do the trick. I did take a Z pack and then some Ceftin. I had repeat blood work that showed some improvement but not enough. My rhuemy started me on 500mg Cellcept, 9/26, and was told to stay on the 20mg of pred. My coughing picked up and I was given yet another antiobiotic to take for 10 days. The night time coughing is gone, my nose is not bloody but has a few specks when I do blow my nose. My arthritis is gone. My nose does not feel swollen any more, it really is not stuffy any more and my post nasal drip is almost gone. I feel like I have much more energy. I hope this is a step in the right direction. My rhuemy said it might take a month on the Cellcept before my clinical symptoms go away.
I am scheduled for more blood work in mid november. I am to check in on Oct 24..thats 4 wks on the 500mg Cellcept. Of course I can call my rhuemy's office anytime with concerns. I still do have a low grade temp everyday..average 99.5F. The temp is in the mornings and sometimes I take two Ibuprofen. I was warned not to take Advil and be careful with the Ibuprofen. My night sweats are coming back and my ears are still full. Oh yes and there is the dry hacking cough during the day. It is worse when I talk. Hate that!
I have known my Rhuemy for 17yrs. It is because of him my daughter is still alive. She had an extreemly agressive case of pediatric Lupus. He referred her out to see other dr's many times. He also presented her case at Yale. We gave him permission to send her records to dr's at the NIH and Darthmouth. He never ever claimed to be all knowing. He has many Weggie patients. I have not yet had the time to discuss some of the Weggie docs that all of you see but I will. I KNOW he would not blink an eye to get me a second opinion.
All of my drs have been working with me now that I do not have health ins. I told them that I want to be well and please do not limit my treatment because of money. I will figure out a way to pay for what is happening right now.
I did see on someone's post about a list of info from Dr. Seo. Was that you Sangye? I think one of the items listed stated that sinus wegeners was tough to knock out. Is that correct? Could you please re-direct me to which post that was. I would like to share that info with my rhuemy.
I wish I knew if the Cellcept was working. I think so..maybe. After reading so many stories on this forum I am lucky to have a mild case of this wicked disease. I wonder about my ears. Sometimes they open so if I can hear better sometimes that means that my hearing is not toast..right? I dunno. The ENT said my eustation tubes were swollen. IS that what it is? I know when I saw my rhuemy on sept 26 we talked for an hour. His office is awful for waiting but once you get in he is all yours. I asked so many questions and dont remember all the answers. I could call him everyday but that would be crazy. It is hard to wait. Does it take a bit to see improvement? I dont see that too many ppl take cellcept. There were other option like Imuran and Rtx but my dr chose the cellcept. I know he explained it to me. What causes the night sweats? and fever? Inflamation of... the stuff in my head? What is the dry hacking cough from? I need to take better notes for my next visit. I will have so many questions of all of you as I try to make sense of this disease.
Thanks for welcoming me into your group! Kim