Here is my story. I have not gone into remission yet, but doing lots better than in January 2008, when I stayed in bed more than being up and around. It is a very lengthy story. I enjoy traveling but have to use a cane for walking and a wheelchair for longer trips. Healthwise I feel sooo much better. I knit a lot and do prayer shawls for various people, either ill, new baby, or special events.
My story with Rheumatoid Arthritis and Dermatomyositis started actually a very long time ago when I was a child, but in 1999, when I was 58 years old and traveling in the Baltic area, the newest episode started with a bang. We had been touring with about 180 people (German choirs) and when we arrived in Stockholm, Sweden we had a few days free to walk and visit many interesting places.
The second night I woke up about 3 a.m. and my right leg felt like someone had hit it with a baseball bat. I went to the bathroom and soaked the leg in warm and cold water. It slowed down the pain and I returned to bed. I could hardly walk the next day, but sitting in the bus and traveling across Sweden was not a problem. I continued to have pain for more than a week and when we finally arrived back in Houston, TX, I made an appointment with an orthopedic doctor who told me I had a spontaneous fracture and put my foot in a cast. Now that was a real surprise, never even heard of something like that.
Two years later (2001) I had the same problem with my left foot, and that is when the doctor sent me to have an ANA x-ray done that showed I had arthritis. The x-ray came back so positive that he sent me right away to a rheumatologist, who put me on Celebrex and told me that I had to have a blood test done every three months so they could make sure I would not have a problem with my liver. Now isnft that interesting: a medication that is supposed to help you stay without pain but can damage your liver. Down the road, other medications caused more health issues. I took the medication for awhile then discontinued it because I didnft have any pain from the arthritis.
@ In 2003 I had a bad kidney infection (left side) and ended up in the emergency room for a day. I was in so much pain that I could not even stand upright and only could take short breath because every one of them hurt. I had to stay home for several days. They gave me antibiotics and a pain medication in the ER. I have an allergy to sulfa medications. When I take MSM I get sick to my stomach, I had ordered a lotion from somewhere and the cream had MSM in it. You should have seen my hands, really made them hurt. Never again.
In the fall of 2004 I started to have little nodules on both of my arms. I went to my allergist and she gave me a cream to put on them, but that didnft help at all. At that time I also started to have a dry cough; it didnft bother me much so I just took some cough syrup and went about my merry way.
In November of 2004 I had a very bad bladder infection and the doctor gave me antibiotics for ten days; four weeks later I had another bladder infection and I ended up with more antibiotics plus a medication that was to clean the lining of my bladder. I think that was the trigger to the beginning of my road with Rheumatoid Arthritis.
My fingers swelled up like little sausages and typing at work was very hard. We had a lot of work every day and some days my fingers looked like someone had taken a knife to them, lots of little sores. My GP gave me Prednisone to take, but only for ten days. The swelling went down a little, but after a few weeks it was back again. I went to the Rheumatologist, who told me to get back on Celebrex. I could only take 100mg of that medication, everything else was too much. He started me on Methotrexate. I took this for about three weeks when my cough became extremely bad.
@ By March 2005 my cough was so bad that the girls in the office told me I had a hairball in my lungs and couldnft get it out. Very funny, but it felt like it too. My GP took x-rays and told me that I had pneumonia, and after a week of medication I ended up in the hospital with getting Prednisone and antibiotics pumped into me. They took more x-rays, a CT-scan and an EKG. The one thing that they all were sure about was that I had this grey spot in the middle of my lung. When I told my GP about the Methotrexate she made me stop it right away. Come to find out Methotrexate and lung problems donft mix too well.
I called my rheumatologist and he just blew it off. It really upset me that he could care less. That was the end of him and I was looking for another rheumatologist. I was off work for four weeks and then when I went back to work I could really tell how ill I had been. The pulmonary doctor made me come in several weeks in a row to check me. Then by the middle of June when I went to see him he told me that I had to have this five year pneumonia shot. I argued with him but he insisted so I had it. Boy, what a mistake, within a week I became sick and by the third week the CT-scan I had showed that I had pneumonia again. AGAIN? So I stayed home for several days and then went to work again but work became more painful and tiresome by the day. End of August I went back to my GP and she put me on a six week medical leave, more medical leave after that, I was never able to go back to work again. I medically retired January 2006.
@ Within another week (September 2005) I was so weak and I was losing a lot of weight. The pulmonary doctor had not called me back for three days and I was so miserable, so I asked my daughter if she knew another pulmonary doctor and she sent me to hers.
By mid-September I had a lung biopsy done and then three weeks later I had to have an open lung biopsy to find out that I have pulmonary fibrosis caused by the rheumatoid arthritis. I was put on a high dose of Prednisone and also on antibiotics. If I had known then about the antibiotic protocol I believe I would be in remission now. Once I was off the antibiotics my new rheumatologist put me on cytoxen (chemo) and for one year, once a month I had chemo. The longer I took the chemo the longer it took to get over it. By November 2006 it was taking two weeks to get back to a more normal life. My fingers were still swollen, the skin on my hands developed red patches all over and the itching was terrible . The doctor just told me to take my medication and I would get better. That was the Dermatomyositis rearing its ugly head. To this day I believe that the Dermatomyositis was drug induced. I still cannot wear my wedding ring because of the swollen fingers, so it is around my neck on a chain. By the end of 2006 I had a bad cough and bronchitis and finally refused chemo again.
January 2007 they sent me to Denver to see a specialist who was not very happy that I had this five year pneumonia shot. Between him and the rheumatologist I was put on Cellcept and Enbrel; I was still taking Prednisone but was down to about 5 mg a day. I had already heard how much damage that medication could do.
By July 2007 I had several eye hemorrhages and double vision from the combination of Cellcept and Prednisone. I rushed to the eye doctor and was sent to a specialist to see if I had damage to the retina. Everything was still good. The pharmaceutical company Roche stated in an e-mail to me that the combo of the medications could cause several eye problems, including the ones I had. Really great when your own doctor doesnft know this. My Dermatomyositis was not going down with the medication I was taking and I my fingers were always hurting. So I cut the medication down for about two weeks and then went back up slowly, but within a few weeks I started to have a bad sinus infection, my feet and hands had sores and I could hardly walk.
I ended up buying a cane so I could at least walk a little; later on I also purchased a wheelchair for longer trips. I had been on a trip with my husband and my feet hurt so much that he had to put lotion and socks on my feet. I was miserable, I didnft know then that it would get worse. The Enbrel and Cellcept made the sinus infection come back constantly even with stopping the medication off and on. When I went to Europe for two weeks I could hardly walk but I had to go and take care of family business. I did a lot of sitting and also sleeping, the jet lag really hit me hard.
January 2008 I spent most of the time in bed, not accomplishing much. I had an appointment with my pulmonary doctor and he gave me Biaxin 500 mg twice a day. He told me to stop the Enbrel slowly, but I had to get off. When I came home I researched: "Rheumatoid Arthritis and antibiotics". This is when I found "The Road Back Forum". I read all the info, bought the book and went online to find a doctor that used the antibiotic protocol.
I found a doctor in Lufkin, TX, made an appointment and went to see her within two weeks. I was lucky to find an AP doctor so fast and close by. In the meantime I still had to see the rheumatologist and when I told her that I was on Biaxin she was very upset. For a rheumatologist this is the worst case scenario. THEIR PATIENT IS GOING ON ANTIBIOTICS AND NOT TAKING THE DMARDfs. Guess she felt like she was not going to make money on me again. I finally quit going to her in August when she told me that only the DMARDfs would help me to get well.
At this point the FDA had just black boxed the four medications such as Enbrel, Remicade, Humira and another one for causing a fungal infection. No way was I going back to that stuff. She also told me that why I went to Denver was because the chemo had failed me. She told me that 18 months after the fact. Was I ever mad.
The doctor in Lufkin told me to stay on the Biaxin since that would help with my sinus and she also gave me an anti-fungal antibiotic (Nizoral) to take care of my feet. They healed up fast, now after one year I seldom have problems with them. I also had to start eating gluten-free foods so my gut would heal or at least not cause more problems. I do take a good probiotic. In April Dr. K put me on Minocyclin to be alternated with the Biaxin. I had started to feel really good and was able to walk a lot more. My husband told me later that he had thought about quitting his job and taking care of me since I had become so weak. I am so glad he didnft have to. The medication worked well till I found out in June 2008 that I supposedly have a blood clot in my lung and she had to take me off the Biaxin. She told me that cumidin and Biaxin donft go well together.
Last year Dr. K also questioned why the rheumatologist wanted to do a CT-scan every six months; come to find out that the cytoxen they gave me for a year can also cause cancer and she told me that they covering their behind, another nasty thing to find out what these medications can do to you. In the meantime my pulmonary doctor questioned the blood clot and had several other tests done and nothing was showing a clot, so he took me off the cumidin. This medicine had turned my hands almost purple. I am still having problems from this episode. The Dermatomyositis leaves my hands scaly and dry and the redness is very pronounced. The Dermatomyositis was diagnosed in 2007 and has given me lots of problems. Some days my hands do well and other days I have to put lots of lotion on them. I also have the problem on my scalp and some on the side of my face and my ears.
In August it was back to 200 mg Minocin Monday-Wednesday-Friday and 500 mg Biaxin on Tuesday-Thursday -Saturday. Now I am also taking Thyroid 90mg, Ioderal (iodine), and supplements.
@ Now back to when I think all these problems could have their origins: I had the usual childhood illnesses, one bout of some kind of illness where I had to stay in the hospital for a long time. Penicillin or any other antibiotics were not to be had in post-war Germany. I had the flu in 1951 and the Asian flu in 1956, both times in bed for prolonged times. The flu in 1956 started the problem with the tendon in my arms. As a young adult I had continued sciatic nerve problems, never really going away until I was put on Biaxin, then it faded away. In mid-1960 I twice had a problem with strep throat. It was so bad they had to give me shots to get me well.
Starting from 1970 till 1996 I had constant sinus, bronchitis, pneumonia and ear infections. Had my ears taken care off when I had a stapedectomy done to both ears, one in 1986 and the other 1987. During the 1980s I always had dry skin besides the sinus problems. I always thought that the dry skin came from working in a warehouse, but it was already the Dermatomyositis then.
Part of my history - someone asked me about women problems and I remembered I always had a very heavy period (like for two weeks) after my third child, and by the time I was 30 I had to have a hysterectomy. I had severe endometriosis but I never thought that it could have been from the DM. I also was tired very often.
I also had both of my inner ears replaced do to problems from sinus and regular ear infections that didn't heal for many years and so build up this nasty stuff in my system till the RA and DM took over. I worked for 35 years before I had to stop because I became so ill that I couldn't stand up for more than 30 minutes. Even sitting down wasn't much help.
@ In 1989 after spending some time on Long Island I had this funny looking bit on my leg. It itched really badly and it got larger by the week. Then I saw a show on PBS called: Once bitten; and the things fell into place. I went to my family doctor and showed him my bite area and asked him to test me for Lyme. His answer was that it's not here in Texas so you can't have it. I told him that I had been on Long Island, but he just shrugged it off. After persisting that I wanted the test he took blood and actually prescribed a three week tetraycline. He told me to come back in three weeks; which I did, he told me they lost my blood test and he had to do it again. Naturally they couldn't find a thing then. I may ask the doctor that does my mycoplasma testing if she could do a good blood test for Lyme. I need to know.
@ In 1997 I found out that I had also vasomotor allergies (from pollution). So I went through a few years of getting antibiotics because I had these allergies that caused me to have a lot of bronchitis. Taking the antibiotics I think kept the rheumatoid arthritis in check. I had not taken the antibiotics for about a year when it started to creep back into my system; with the bladder infection, in 2004, the rheumatoid arthritis became full blown. I think I was in a big flare-up for three years until I started the antibiotics.
@ Just a few months back I had to have an x-ray (I am surprised I donft glow) and they found that I had broken a rib. I asked the doctor why I did not feel the broken rib and she told me that the Prednisone had leached my bones so much that I now have osteopenia and this could happen again if I fall or bump into something. Great to know what Prednisone can do to you. Another thing - my thyroid quit on me, so now I am taking a natural thyroid medication to help with the problems of weak muscles and being tired. After I had gone on the internet I joined the email@example.com group and later the Dermatomyositis support group and The Road Back Forum. These groups are a life saver for many people. The information given out helps; no one is a doctor, but when they have gone to see their doctor they share that information and that gives a person a chance to maybe ask their doctor if this or that treatment would be good for them too. I have met so many people from many countries that have the same or several other autoimmune illnesses. After just a year talking to all these friends I have learned so much more about autoimmune diseases, that your doctor can not even explain to you because they have no time.
You can reach me at firstname.lastname@example.org