Home Forums Personal History and Progress Threads rheumatoid Arthritis and Dermatomyositis…the hard road to

This topic contains 48 replies, has 1 voice, and was last updated by  Eva Holloway 2 years, 8 months ago.

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  • #328797
    Eva Holloway
    Participant

    I have been walking a lot more. We went to IKEA twice within the last two weeks and I walked both floors of the store. It goes zigzag thru the whole building, I did real well the only problem I had I got a cramp in my right foot. I am using my three-wheel rolator a lot and realy get around well. I hope it will help with my body getting more upright.

    Since my aldolase is now in the normal range I just wonder what still causes the redness of my hands.  Maybe because the aldolase had been so high for so long it may take longer to go away. Also my skin is still peeling very badly,sometimes big pieces of skin come off.

    I have been working on eating all gluten-free foods. Sometimes it is hard when I go someplace and there is not much choice on gluten-free foods. Found a few restaurants now that serve gluten-free foods.

    I am using my sauna about three times a week and I am starting to sweat a little more every time I use it. I actually enjoy the warmth of it when I get in. Some times I am cold because of the airconditioning in the house.

    I think I have a fungus on my feet. My toenails are turning yellow. I am still using Nizoral, but it is not helping that much, I may need to check with the foot doctor and see if he has something else to use. I wash my socks with a disinfectand so nothing gets on the other cloths. I even use that on my towels.

    I have been on the antibiotic protocol for 28 months.  I am doing lots better, but there is still a way to go to go into remission. The LDN helps with some of the problem.

    Eva Holloway

    #328798
    Eva Holloway
    Participant

    Well I am back to square one with the walking. July 12th I fell in a store and broke my left hip, bruised my left arm and left leg. I was transported to the hospital and they took tons of x-rays due to the fact everything on the left side hurt. No broken arm or leg but the hip is gone. The fall pushed my leg up into the hip area and once I finally was moved to the right bed they put a boot on the left leg and a five pound weight. That was no fun because every time it poped the leg out of the hip I was in a lot of great pain even with the pain medicaition they had me on.:crying::crying::crying:

    Next day they came and told me that the doctor had not released me yet for surgery. Thank God they knew the doctor was in the hospital and he finally cleared me, but it was too late for the surgery for that day and the doctor doing the hip had a full schedule for Wednesday so I had to lay there till Thursday morning. Surgery went fine and by Friday morning they had me up and walking, no rest for the wicked LOL.:crying: They removed the catheder:doh: on Saturday and I was moved to the rehab on Monaday evening.

    Tuesday they really started some long therapy. three hours every day for almost two weeks. I was tired after that, but it did really help a lot.

    First day home I was not feeling to good because sitting in the car was not comfortable but after I had a pain pill I finally was able to lay down and relax. They gave me two different antibiotics by iv and my hands started to look like I never had an issue with them. Nice and smooth and no peeling. Now after almost 6 weeks they are starting to peel a little, but the one doctor had given me Ammonium Lactate Lotion 12% and that seemed to help some too.

    I am down to 1 1/2 pain pill and try to wean myself totaly off so I can get back to LDN again.

    I started walking with just my cane and it seems I am doing better in walking around the house. I have cooked some meals, put dishes in the dishwasher and folded cloths. So all in all the vacation is almost over. I still have therapist come to the house to do some therapy and make sure I move enough.

    Eva Holloway

    #328799
    Eva Holloway
    Participant

    Well I am walking with a cane now, and if we go for longer walking I use the rollator. Every morning I walk with the rollator up and down the street to get my strength back in my leg.

    Had an appointment with Dr. K. and I asked her what medication  was given to me the 2nd and 3rd day. Come to find out they gave me a strong anti-histamine due to the fact that I had all that pain medicaiton and couldn't eat and they told me I needed to eat. The food was not the best, looked okay but I had no hunger. My hand still loked so much better even after 7 weeks but little spots started to show up on my hands and I didn't want to get red and swollen hands again. I also had gotten a lotion that seemed to help. Dr. K gave me a pill prescription for the same medication and after 4 days taking the pill the hands are starting to look good again. Now I need to figure out where the high count of histamin comes from, what food triggers it. I know tomatoes does it and we love spaghetti and the sauce I make, so this may be one way of cutting some of those triggers. have to figure out what else I can have with my rice spaghettis. Another thing is pickled stuff or things with vinegar. I had some more blood work done by my regular doctor since she wanted to see me after surgery and I have a low Red blood count and a low magnesium level. So Dr. K told me to get Calm magnesium to take with my calcium. I do take cal-mag and boron but she thinks with the surgery, the histamin problem and not eating right this may have been the cause. I will try anything to get me well from either the RA or the broken hip.
    I still can not drive my van and I am so bored at home, I have to wait till someone takes me places. My grandson helps me but he sleeps late right now since he lost his job, so it is only in the afternoon that he will take me where I need to go. My husband works and I have one friend close by that comes over to keep me company. Most of my friends live about 20 to 45 miles from my home. I think next week I am going to practice getting in and out the car. Since this is my left hip I may be able to slide in the car better than on the passenger side.

    I stopped taking the pain medication over a week ago and substituded it for regular Tylenol and after one week I have now started to take the LDN again. Last night was the first night. Slept okay, supprised I didn't have total insomnia. My scare looks good and I asked Dr. K if I could use some coconut oil on it to get rid of the scar tissue, I also asked her if I could use my sauna again and she gave me the approval to use both the oil and sauna. So I am starting to use it this weekend when my hubby is home, because it is in the garage and I don't want to fall when I sit on that small chair.

    Friday I noticed I had a small patch of very dry skin right on the back of my thigh where my buttocks starts. I asked my husband to look at it and he said it was just a very red patch, by Sunday night it had turned into a lession, so I went to the doctor Monday and she thinks it may be a small bedsore. I told her the only time I am in bed is at night or sometimes in the afternoon to stretch out for about 15-20 minutes. She gave me a salve and I hope it helps. My husband said it doesn't look so red anymore.

    Eva Holloway

    #328800
    Eva Holloway
    Participant

    Dr. K. changed me from Biaxin to Cipro. She gave me 28 pills of it to see if it helps with the skin peeling. My hands are not red anymore ore swollen, so the anti-histamine is working. I only take one pill a day right now, two were too much. Started to take the Cipro on Tuesday, so now I wait and see if it will work.
    Driving my car now without a problem, have to use a small pillow to sit level in the driver seat.

    Eva Holloway

    #328801
    Eva Holloway
    Participant

    getting better with just walking with a cane, for longer distances still the rollator. Have gone to Austin  (156 miles) for choir rehearsal and a meeting. That was a long day sitting in the car for 2 1/2 hours each way and then the meeting and rehearsal. Sure glad I brought my pillow along for sitting in a hard chair.
    Have an appointment with the spinal surgeon on Tuesday since one of my vertabreas is pushed forward and it sticks somewhat out of my back. Some days it hurts more than others and then I put a pain patch on it.
    Still doing exercises and walking, now were it is a little cooler in the morning it is easier to walk in the park. Been walking on the street but that's not as nice as in the park.

    Eva Holloway

    #328802
    Eva Holloway
    Participant

    well here we go again with damage from the prednison. I broke a tooth, just bit into a peanut butter cup and there went the tooth. The dentist then told me that I have to get clyndamycin and take FOUR pills before I can get the tooth removed because it just broke into two pieces. Not only did I find out if you take medication to build up your bones like boniva, actonell or even miacalsin you have to make sure you take an antibiotc an hour before the tooth removal. The dentist explained that I could get necrosis in the gum and it could lead to more problems.

    Eva Holloway

    #328803
    Eva Holloway
    Participant

    had the tooth removed and a temporary bridge put in. Had a re-check on the tooth and the dentist was suprised how well the area healed where the broken tooth was. In another three weeks I will have a permanent bridge.

    went to see the doctor that did the hip replacement and he also told me how well I have healed even so I have RA. He told me usually patients with RA have a harder time healing, I guess he doesn't realize that the antibiotics and supplements heal the body. The spinal surgeon told me there is nothing they can do for the vertabrae that is sticking out in the middle of my back, he thinks when my back gets stronger it may move back into place. I am doing exercise every day to strengthen my bones and yes I am walking more upright.

    Had a mammogram done which turned out okay and a ct-scan which I will get the report next week. I am also going to have a pulmonary function test done next week, so I hope everything is getting better.

    I had to stop the LDN again and will start back tomorrow again since I don't think I have to use any more medication with codein.

    I am still walking about two miles every day and I think that helps a lot with me walking more upright. I only use the rollator when I walk longer stretches and use a cae at home, sometimes I walk around the house now without the cane and then I have to go looking for it. LOL.

    I can not beliefe how far I have come in the almost three years. I know I am far from in remission, but I am so much better then beginning of 2008.

    Eva Holloway

    #328804
    Eva Holloway
    Participant

    well I got my report today for the pulmonary function test and the ct-scan. Both were excellent.

    On my scan it states: The small nodule on the left thyroid is actually less pronounced.
    On my lungs: there has been continued decrease in prominence of interstitial opacities in the lower lobes which suggests continued improvement .

    whoohoo such a good report after five years of having interstitial pulmonary fibrosis, the AP and NAC, ALA is working.

    Eva Holloway

    #328805
    Eva Holloway
    Participant

    this is my original story, moved to the end since it would not come up on the beginning after the transfer to the new system

    Rheumatoid Arthritis and Dermatomyositis… the hard road to winning my life back

    By Eva

    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 isn?t 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 didn?t have any pain from the arthritis.

    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 didn?t help at all. At that time I also started to have a dry cough; it didn?t 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 couldn?t get it out. Very funny, but it felt like it too.

    My GP took x-rays and told me that I had pneumonia, 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 don?t 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 theCTt-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. For four days I had a tub in my chest to drain the accumelated fluid. They gave me morphine which made me sick to my stomach. After I left the hospital 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. 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 doesn?t 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.

    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 didn?t 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 spend 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 DMARD?s. 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 DMARD?s 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 didn?t have too. 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 don?t 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 scarlet fever when I was about 6 years old. Measel, mumps and chicken pox.

    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 other1987. 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.

    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 don?t 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 Prednisoe 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 [/size]rehumatic@yahoogroups.com[/size”>[/color] 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 info 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.

    Thank you
    : Liesl Dutro, the Fairylady, Teresa, Dolores and Mike, Maz, Lynnie, Kim, Ethel, Lynne and Santos, Harald Weiss, Cooky and so many others that I have met who have given their help and advice freely. You have given so much and many of you have had worse than I have.

    I am positive that now I am taking Minocin, Biaxin, Thyroid, Ioderal and the supplements I will be in remission by the end of 2009. I know it is a long way, but I had been sick for three years before I started the antibiotic protocol. I also do exercise three times a week and the people also run the physical therapy group there and are so helpful, I get a free massage once in awhile and it works wonders.

    There also goes out a thank-you to my many friends here in Houston, TX that have helped me, listened to my complaints, or even to my many explanations about my illness, and keep coming back to see how I am doing. Their phone calls and e-mails are also very encouraging, and the prayer team in my church is checking on me weekly.

    Eva Holloway

    #328806
    Eva Holloway
    Participant

    Dr. K was very pleased with my ct-scan report. She said, well the antibiotic is working, don’t let anyone tell you that fibrosis can not be healed. She told me to stay on all the medication and supplements I take so far.
    I had a high blood pressure, to high to be comfortable and she wants me to go to my regular GP. So I have an appointment on Friday morning. I went today and had my blood pressure checked and it was 131/61, not bad, so I wonder what happened on Tuesday??????????????
    Still walking as much as I can

    Eva Holloway

    #328807
    Eva Holloway
    Participant

    I am not sure what is going on: My hands are acting up again, not as bad as before the hip issue, but enough to be painful on some fingers off and on and I have to use band-aids again. More skin peeling too on my hands and feet. My left wrist is sore and so is my left elbow.
    It may be that I have had to switch to clindy several times because of my teeth problems. I also have not been able to take my LDN now for several months and even so I sleep well, it is not as deep as when I took the LDN. Hopefully mid-February I will be back to a normal schedule for Minocin and LDN.
    I am doing a lot more work around the house, using a timer to work like 30 minutes in each room and then take a few minutes break in between. Bought myself new tennis shoes (Skechers-Shape-ups), they seem to help me stand more up-right.

    Eva Holloway

    #328808
    Eva Holloway
    Participant

    Your labs pretty good, Eva. I think the Vitamin D could be a little higher for optimum health so maybe you need a little more than you are taking. The ANA is mildly elevated, but it

    Eva Holloway

    #328809
    Eva Holloway
    Participant

    I decided that the Pepcid is not working as it should so beginning of March I started to take it only for three days in the morning and evening and here it is end of March and my hands look well. So starting tomorrow April 1, 2 and 3 I will take the Pepcid again and then nothing of it till May. I want to see if it works again. As usual I have to try and see what works best with the medication I take.

    Eva Holloway

    #328810
    Eva Holloway
    Participant

    Had the best pulmonary function test yet. My doctor asked me to write down what medication and supplements I take because he has a few patients with interstitial pulmonary fibrosis and they are not doing as well as I have. He wants to check the AP out to see if he can help others with this health issue. He wants me to do a pulmonary function test for a little while longer to make sure I am staying the course.
    Eva 😀 😀 😀 😀

    Eva Holloway

    #328811
    Eva Holloway
    Participant

    I am now taking my Pepsid AC? twice a month for three days each and it seems to work. It may change again down the road but at this time it is working okay. I knit now without gloves and I enjoy it so much more. I do wear gloves for doing dishes, dusting and a few other things around the house.
    I can walk better but I have not kept up with the walking, sometimes I go to the mall with my little three-wheel rollator and walk from one end to the other with just one rest. With this heat we have in Houston I don’t waant to walk outside. I do things around the house, more than before but don’t walk enough.

    Eva Holloway

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