| Phillidelphia | Pennsylvania | My Story | |||
| Medford | Oregon | Julie's Story | |||
| Espoo | |||||
| Roanoke | Virginia | ||||
| MWorth25@AOL.COM | Mike's Mom Story | ||||
| Kay's Dad's Story | |||||
| North Carolina | Lulu's Story |
I probably started with symptoms in 1969. I had an eye flare of episcleritis and the hospital tested me for different things since episcleritis is not a common eye condition but at that time found nothing.
Through the years I have had various joint pain and swelling particularly of the neck and knees. I had a nose flare and the doctor thought it was a very bad sinus infection, and treated it accordingly. I began to suffer miscarriages and still no one made any connection to autoimmunity.
In 1989 my ears flared and the doctor thought it was an insect bite that got infected, several weeks later and countless antibiotics that didn't help I went to an ENT. with bag of pills in hand he looked at me and immediately knew what it was RP. He ordered a biopsy of the ear and the results were confirmed. He introduced me to prednisone.
In 1992 I suffered my first MI due to RP and a year later the second and last year a third. I have had numerous bouts with the eyes and my retina began to detach but that was recently repaired via laser surgery. I am legally blind and have a lot of pain in the upper chest, rib area and throat. also the joints like the knees and fingers. I also had a wound that wouldn't heal that they attributed to the RP and almost lost my left leg in 1994 because it had turned gangrenous. But fortunately it has healed.
Currently I am on methotrexate 25mgs once a week and prednisone. I have had confirmed cat scans of trachea flaccidy and my heart is weak and only working at 30 to 40 % of its pumping capacity. I do not know what will come of either problems yet but I know I was told I am critical.
Early intervention and treatment is so important to autoimmune diseases as well as baseline testing to assess any destruction that is going on in your body or will happen in your body
Back to the indexKay's Dad In 1991, Dad went to an Ear, Nose and Throat specialist because of an
inflammation of his ears - swelling, redness and severe pain. That Dr.,
while intrigued, did not recognize the disease. However, he did prescribe
Prednisone which abated the symptoms. He referred Dad to a dermatologist
who diagnosed RP and documented with pictures and put him before some
medical boards to be reviewed by several Drs and those studying to become
Drs. He was also sent to a specialist in Salt Lake City, UT, who
recommended that in addition to the Pred he take Dapsone. He has tried
Methotrexate, but did not like the way it made him feel. He has found what
works best for him is between 10-25 mg of Prednisone and 100-150 mg Daspone.
The relationship he has with his Drs since that time has mostly been on a
prescribing/observing basis and they pretty much allow him to determine when
to raise and lower his dosage depending on his symptoms (flaring or not).
He has determined that he cannot get below 10 mg Pred for very long without
having flares. He is currently having problems (pain and swelling) with
his right knee and recognizes that he has had that problem for quite some
time, but until he began hearing stories from this group did not relate it
to the RP. He usually wears a soft knee brace. He does have
occasional mild involvement of the eyes (dryness and some discomfort) ,
throat (soreness and hoarseness) and joints. He is in excellent health
for his age of 78 with the exception of the RP. He counts himself lucky
for that.Back to the index
Mikes Mom
My mother had symptoms about 10 yrs. ago, starting with hearing loss. They linked that to something else. The doctors then thought she had allergies and even asthma. It wasn't until two years ago they started seeing redness in her ear. By then she started having breathing difficulties. That's when the stendts were inserted. She is still having breathing problems which caused her to remain on a ventilator.Back to the index Julie
Julie developed saddlenose deformity in 1982-83. She was diagnosed as having Lupus. She had reconstructive surgery on her nose. She had no other symptoms at that time. She did have constant headaches and MRIs and Cat Scans showed that there was also sinus destruction.
Julie then developed eye problems (retina). We were sent to Boston to see Dr S. Foster. He diagnosed her as having RP.
Julie's right eye continued to worsen, Drs tried numerous surgeries and medications to save it but none were effective and was finally removed. Her headaches stopped immediately. She felt "normal" for about 10 months. Her eye was removed in August of 1994. The headaches started again around April 95. At the same time she began to notice a blurring of her vision in the left eye. Her eye Dr thought it was cataracts. We were sent to a Dr at the Oregon Health Science University. The Dr there said he had been treating similar problems with regimens of Cytoxin. So Julie underwent 4 rounds of treatments. None were effective and her sight would come and go.
Finally in August 95, she woke up one morning and it was gone completely. The tried another massive dose of cytoxin for several weeks, but it did not help.
Her headaches tend to come and go now. She had a very bad time from fall of 97 through June of 98. She had severe headaches and could not get out of bed for any length of time. She would have a rare good day.
Her regular Dr kept prescribing stronger and stronger medication. We gave up on that Dr and began seeing others. Her dentist thought she was suffering from TMJ. So she received treatments for that. We saw a nuerologist who ruled out any nuerological causes. But he luckily didn't give up. He sat down with us late one afternoon and he went through his books about RP. After about 45 minutes he said that Julies Prednisone was to low. (Her original Dr was trying to wean her off of it.) The Nuerologist moved her Prednisone back up and by the next morning her headaches were gone. Took her a long time to get any strength back.
She still gets headaches, tho now they are weeks apart or sometimes more than a month in between.
We also have not gone back to the other Dr.
We are now seeing another Rheumatologist. During our first visit to her, she asked about preventive measures that the other Dr had taken, such as bone density scans because of Julies long history of taking Prednisone. There had never been any taken. She also told Julie she needs to take lots of calcium. The other Dr(?) had never mentioned this. She has limited knowledge about RP, but she at least has taken an active part in Julie's treatment.
We have learned, that you cant rely on the Drs to always be watching out for you. You have to rely on yourself to get the best treatment you can.
Lulu
I first was diagnosed Jan. 11, 2000 when I had a flare up with my ears! I had 4 ENT's looking at me at the same time and they all agreed that I had RP. When I began talking with my ENT, I remembered the flare up I had had in November 1999 when both eyes swelled up with the same involvement of inflammation in my face, glands, etc. At the time, my GP thought that I was having an allergic reaction to Benedryll cold tablets or the dye in the tablets. Now we know that I have been having other symptoms that are related to RP. I have also discovered a hole the size of a pea in my nose cartilage (between my nostrils). The ENT says that to try to close it would be about a 50% chance that it would take care to the problem or that it would remain closed. I decided to leave it open, what with the RP, I would probably be fighting a loosing battle and just have a larger one appear down the road.
I have also had a bout with Eryrethema Nodosum on my lower legs which had the same exact feeling as my face and ears and even went through the same fever, hot , blistering, peeling, red, painful ordeal. That was probably four or more years ago.
I have been diagnosed with Sleep Apnea and had Bell's Palsy in 1992. It was July 29th, 1999 that I went on Disability from my job of 19 years, 4 months of teaching in an institution for the mentally retarded because of degenerative arthritis in both knees. Since then, I was involved in an accident where a large dog ran in front of my car and I ended up going to a Chiropractor for therapy. It was then that I discovered that I had severe degenerative arthritis in my upper and lower spine and my right hip. Their x-rays also confirmed the fused vertebrae in my upper spine which is from the Klippel-Feil Syndrome that my daughter and her 3 year old son as well as myself have been diagnosed with.
I can see that I have the prospects of '"anything" down the road from reading the posts of the support group. I would not miss any of them. Having you folks out there is all I have for knowledge of this dreaded disease, not knowing if my Doctor has even treated anyone with it before. I will find out this Friday when I go back for an appointment. A week ago, I had to stop taking my meds, all of them, including my Dapsone which is supposed to keep my from having a flare up? I was so sick to my stomach for two or three weeks from all of the meds, that I could not bring myself to take another pill. I will mention this to him when I see him Friday. The pred left me with the feeling of being "crashed" as someone in the group mentioned. I have felt so awful that I could hardly hold my head up much less want to eat anything for fear of knowing that it would make me nauseated! Has anyone else had the same feeling after being off of pred for a couple of weeks even?