Fanny's Sarcoidosis Story
August 13, 2011
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In October 1999, a Gallium 67 scan confirmed active sarcoidosis in the lymph nodes in her chest and at the opening to the bronchial tubes...but no active sarcoidosis in her lungs. However at this point her breathing capacity was down to only 60% as a result of earlier sarcoidosis induced damage to the lungs. A CT scan was also performed to further identify the specific locations of the active sarcoidosis. The doctor immediately placed her on a 40 mg daily dose of prednisone and continued that level for four weeks, then dropped progressively until she reached 20 mg daily dosage. After several weeks at the 20 mg daily dosage a second Gallium 67 scan was performed. The results showed a reduction in the active sarcoidosis! Her prednisone dosage was reduced to 10 mg per day. Her breathing also had improved somewhat.
In April 2000, the ongoing prednisone treatment of 10 mg per day was reduced first to 5 mg per day and then to 5 mg every other day. Near the end of May and early June 2000 Fanny experienced reduced breathing capacity and increased symptoms of shortness of breath with even the slightest exercise and climbing stairs again produced breathing difficulties. It became apparent that she was having more difficulty on the days she skipped the prednisone. Her doctor was consulted and he agreed that she was regressing. She returned to 10 mg per day and has remained at that level for the past several weeks.
Through June 2000, Fanny's overall condition remained somewhat improved. She was able to function and continue her daily routine. She continued to tire easily and was discouraged by what little she could do before getting so tired she had to rest. Her breathing continued to improve and she continued through the remainder of June 2000, on 10 mg per day.
Near the end of June 2000, the doctor determined another gallium scan should be taken. He also told Fanny to reduce the prednisone to 10 mg one day and 5 mg the next. After three weeks she was to reduce the dose again to 10 mg every other day. That was to remain the dosage for three months. Her condition seemed to have stablized again. She was able to function but tired quickly and her breathing was still reduced somewhat from the best it had been for the previous few months.
The gallium scan did not show any changes. Fanny's lungs remained clear of active sarcoidosis, however, the lymph nodes continued to show active sarcoidosis. By October 2000, her breathing had returned to the pre-June 2000 level and the 10 mg of prednisone every other day remained her dosage.
By August 2001 Fanny remained on the 10 mg of prednisone every other day...she had now been on prednisone continually for two years. After discussing it with her doctor she added a natural food supplement and vitamins treatment in addition to the medication the doctor continued to prescribe for her.
She continued to experience improvement in her breathing and experienced increased energy levels. We continued to hope she could get off prednisone completely. At the next doctor's appointment she discussed the progress she is experiencing and he agreed that she is doing better. He asked that she continue the present level of prednisone (10 mg every other day) for three more months.
In November 2001, the doctor reduced Fanny's prednisone dosage to 5 mg every other day. She continued to do well at that level.
In February 2002, the doctor reduced Fanny's prednisone dosage to 2 mg every other day. Her condition continued to be stable and we were hopeful that soon she would be completely off prednisone.
During the spring of 2002, Fanny experienced several setbacks where her breathing again became difficult and she encountered congestion and restricted respiratory function. In consultation with her doctor she raised the prednisone periodically to as high as 10 mg per day and then reduced it again to as low as 5 mg every other day. She has not been able to reduce it to the level of 2 mg every other day again. When she has tried that level (2 mg every other day) she immediately was able to tell a significant reduction in her breathing.
As of July 2002 Fanny continued to try and reduce the prednisone without success. She remained on 5 mg every other day.
In September 2002, Fanny was forced to again increase the prednisone to 40 mg per day. Her doctor found that the upper lobe of her right lung was decreased in size. He scheduled a examination where he planned to do a bronoscopy to insert a visual scope into her lung. However, he was unable to actually perform the procedure because of the restriction in her bronchial tube! The sarcoid was actively inflaming the bronchial tube and causing severe restriction. Thus she was not getting sufficient air into the lung to fully inflate the upper lobe.
She continued on 40 mg per day until the middle of November 2002 when she decreased the dosage to 30 mg per day. In December 2002 she reduced the prednisone to 20 mg per day. On her last visit to the doctor it was decided to hold her level at 20 mg per day until the next doctor's visit. An x-ray showed that the upper lobe remained functional because the prednisone has reduced the restriction in the bronchial tube letting more air flow into the lung.
Side effects of the prednisone has been more pronounced this time. Fanny experienced fluid retention and some weight gain. She developed a potassium deficiency after taking medication to reduce the fluid retention.
Yet another possible side effect of the extended prednisone treatment is that her thyroid level is low. However, this symptom may also be caused by the active sarcoidosis.
In February 2003, Fanny's prednisone dosage was reduced to 10 mg per day and then after two weeks to 10 mg every other day. She continued on that dosage until March 2003 when at the doctor's visit her breathing level had dropped again and the doctor ordered another CT scan. Fanny was forced to increase the prednisone dosage back up to 20 mg per day for a few weeks and then tapered off again. She also was placed on three consecutive rounds of antibiotics before her breathing began to improve once again.
By May 2003, she was able to reduce the prednisone until she was again on 10 mg every other day. Her condition continued to improve through May and seemed to stabilize in June 2003.
During the late summer and fall Fanny has continued with little change. She remained on 10 mg of prednisone every other day. As of November 30, 2003 her condition remained the same.
In December 2003, Fanny's prednisone dosage was reduced to 7.5 mg every other day. Her doctor was hesitate to reduce it further without doing some testing. He scheduled her for a CT Scan.
In January 2004, she had another CT Scan. The scan produced evidence of active sarcoid in the brochial tubes again. This was disheartening.
Fanny has continued on a dosage of 7.5 mg every other day and had stabilized to the point that the doctor was considering taking her to a lower dosage. However, because of the bad experience she had the last time he reduced the dosage, a Broncoscopy was scheduled and a biopsy taken of the upper lobe of the right lung. A Gallium scan was also scheduled before a decision on her continued dosage of prednisone.
On May 12, 2004, Fanny learned from her doctor that the upper lobes of both lungs still showed active sarcoid as a result of the most recent Gallium scan. The good news was that the broncial tubes and chest wall were both clear! The doctor increased the prednisone to 40 mg per day for 10 days and then to 20 mg per day for a month to try and clear the lungs.
On July 29, 2004, the prednisone dosage was reduced to 20 mg every other day.
Later in the summer, Fanny was able to reduce the prednisone further to 15 mg every other day and with only a few exceptions she has remained at that dosage for the past year.
This past winter (2004-2005) she had two instances of congestion each of which resulted in antibiotics (several refills each) and each of which took months to recover from. The latest infection turned into pneumonia and caused a spot to develop on her lower left lung. The doctor thought a lung biopsy would be needed to determine if that spot was active sarcoidosis. However, over the past two weeks the spot has disipated as we learned today when a preliminary CT Scan in preparation for the surgery showed no appreciable spot. That was good news for Fanny and she lost no time getting out of that hospital!
In October 2005 after six years on prednisone, Fanny and her doctor at the University of Tennessee Medical Center agreed it was time to try something different. He made her an appointment at Vanderbilt in Nashville because he knew a pulminary doctor there who has experience treating sarcoidosis. Fanny's experience at Vanderbilt was a good one. The doctors she saw were experienced treating Sarcoidosis and agreed she should try something else other than prednisone. The final decision was to put Fanny on Methotrexate and to gradually reduce her prednisone dosage to zero.
Fanny's dosage was 7.5 mg of Methotrexate weekly. She reduced the prednisone from 15 mg every other day to 12 mg every other day. She was getting her blood work done every two months. CT scans continued periodically. There was still evidence of sarcoidosis activity in her bronichial tubes. It would take several months for her to get totally off prednisone and for the doctors to determine if the methotrexate was doing any better than the prednisone was doing. We hoped and prayed for improvement from this decision to try another medication. However, the side effects from methotrexate, while different from prednisone, are also potentially problematic. Fanny was anxious to see improvement. She was obviously tired of it all. That was an understatement.
Fanny continued on the methotrexate and prednisone for a year. Working with her doctors at Vanderbilt and University of Tennessee Medical Center, Fanny reduced the prednisone while maintaining the methotrexate.
In November 2006, she and her doctors agreed to take her off both medications and see what the Sarciodosis did.
During the winter of 2006/2007 she had her usual bout with congestion requiring two rounds of antibiotics. She even was forced to go on a quick round of prednisone where she took 40 mg per day for four days, 20 mg per day for four days and then back off the prednisone. That seemed to do the trick. She fought off the infection in her bronchial tubes, but prednisone was required to do it.
In January 2007, Fanny was continuing to experience symptoms of prednisone withdrawal. She was slowly attempting to exercise a bit. She seemed to reach a plateau where she was no longer troubled by prednisone withdrawal symptoms. However, her breathing did not improve and the pulminary function tests did not show any improvement.
The spring of 2007 found Fanny struggling with her breathing again. Her UT doctor left and she decided to stay with UT and to switch doctors. The new doctor discovered the upper right lobe of her lung had collapsed. He placed her back on methotrexate as Fanny's request before trying prednisone again.
The methotrexate had no effect. After two months, she went off the methotrexate and returned to prednisone. She was given 40 mg per day for three months and then the dosage reduced to 30 mg per day.
The CT scans showed no improvement in the collapsed lobe of her lung. A bronchial scope procedure was performed in early September 2007 with hopes to open the bronchial tube to the upper right lobe of the lung. It was not successful.
On Septemaber 18, 2007, the doctor decided to remove Fanny from prednisone to get a baseline of her condition without using drugs to suppress her immune system. Howevr, she did not get completely off prednisone, but did reduce it significantly. He is consulting with other doctors who have sarcoidosis experience.
The collapsed portion of her lung still does not function at this time. The doctor intends to watch her pulminary function closely.
In December 2007 Fanny saw a doctor with experience treating sarcoidosis with remicade. He put her on methotrexate in preparation for treatment using remicade.
By December 2007 the prednisone was tapered down to 5 mg per day. She was on 15 mg of methotrexate per week and 10 mg of prednisone every other day.
In February 2008 Fanny got a cold and in addition to two rounds of antibiotics the prednisone was increased to 40 mg for three days and tapered off again to return to 10 mg every other day.
She also continued her participation in the study Dr. Wonder Drake is conducting at Vanderbilt University by giving a blood sample. This is the third such sample she has provided.
Fanny's two doctors worked together to convince her insurance to try the remicade treatment that is NOT approved for sarcoid. They agreed after three appeals.
On February 28, 2008 the first infusion of remicade was completed with no adverse reactions. A second infusion was completed on March 13, 2008. A third infusion was completed on April 14, 2008. Subsequent infusions at a rate of once every four to six weeks continued for six months.
After six months of remicade infusions, Fanny's condition has seen the first improvement in 10 years! The last portion of her lung to collapse has regained the ability to function. Her breathing is some better showing slight improvement in the breathing tests.
December, 2008, finds Fanny holding the improvement obtained with the six months treatment of remicade.
So, now she is on prednisone, methotrexate and has finished a six month series of remicade treatments. She has seen some improvement in her breathing as indicated by a slight increase in two of the three parameters that are routinely monitored. She now has regained the use of all but a small portion of one lung and is holding that improvement. She is now seeing her doctors for monitoring and has a follow up CT Scan scheduled after the first of the year.
Fanny had a winter without the usual fight with continuous infections for the first time in several years. We were hopeful that the remicade had succeeded in putting the Sarcoid in remission but in the spring she was diagnosed with Sarcoid in the skin.
Another bronchoscopy was performed and the bronchial tube again has Sarcoid involvement. This was a disappointment to all of us.
The methotrexate is increased to 15 mg per week and the prednisone dosage is raised to 10 mg per day.
Fanny has remained on the 15 mg of methotrexate per week and the 10 mg of prednisone per day since December 2008.
A doctor at Vanderbilt University Medical Center is conducting a study on Sarcoid for the skin using antibiotics and Fanny has agreed to participate in the study. She will not know until it ends in three months if she received the antibiotics or a placebo. We are hoping that this will be successful and that she can go off of the methotrexate and prednisone.
June 2010 After the three months are over nothing has really improved so we feel that she received the placebo. However, in early July, she received a call from the doctor at Vanderbilt asking if she would be interested in repeating the study with the assurance that she will receive the real antibiotics. The time they will be looking at the lung so Fanny has agreed to once again participate in this study.
After the three months her PFTs had improved and we were very excited but when she returned to the doctor in early December they had dropped again. She contacted her doctor at Vanderbilt and she has put her back on the antibiotics three days a week for approximately three to four months. UT Medical Center and Vanderbilt Medical Center are working together along with a doctor from the Rheumatology Group in Knoxville. Right now, she is still on 10 mg of prednisone per day and 15 mg of methotrexate a week. The doctors will try once again in two weeks to start a very slow decrease in the prednisone and see what happens.
Fanny went back on two of the antibiotics three days a week for two months. During the first month of the trial the skin Sarcoidosis recurred. The rheumatologist upped the Methotrexate to 20 mg per week and the pulmonary doctor lowered the prednisone to 5 mg per week. The lesions on the skin gradually got better.
Fanny remains on 20 mg of Methotrexate per week and five mg of prednisone per day. She has had a good summer with no major setbacks.
Updated August 13, 2011.
Why tell Fanny's story? She has struggled for years with doctors who do not understand sarcoidosis and the resulting deteriation of her breathing capacity while enduring the constant battle of respiratory infections and as she does not "look sick" the misunderstanding of friends and associates when she must explain the danger of getting near anyone with a common cold. They don't always understand her need to stay clear of ALL possible infections. Our prayer is that others may benefit from her experience and be able to more quickly help doctors to recognize the symptoms and take quicker action to treat the sarcoidosis.
Fanny's condition is not as bad as some we have heard from through this web page and contacts who sign our guest book. Her lungs are affected the most. She has difficulty breathing, easily gets bronchial infections, and even the common cold requires a tremendous struggle to overcome. Yet, we learn of others who are having more difficulties and who are struggling with misunderstanding.
So, it is our hope and prayer that those of you reading this will find comfort and assistance through her story and through the various sarcoidosis information links we have included on our SmithDRay's Sarcoidosis Page. Our efforts to share through the medium of the internet has brought us contacts, comfort, encouragement, and information that we could not have gotten otherwise.
We do not offer any medical advice and only hope to provide information that is useful to people seeking to learn about Sarcoidosis, so let us know if you appreciate our Sarcoidosis Page!
Ray and Fanny Smith
Go to: SmithDRay's Sarcoidosis Main Page
Go to: SmithDRay's Sarcoidosis Links Page
Go to: Fanny's Presentation on stress to Highland View Church of Christ in March 2003
Go to: Fanny's Presentation to Sarcoid Support Group in June 2005
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