Guest guest Posted April 5, 2000 Report Share Posted April 5, 2000 Greetings Oleksander, welcome to the group! I am just another patient like yourself, but will try to answer some of your questions from my own experience. > > 1) Are the listed symptoms typical for rheumatic polyarthritis? ~~~~~Many of the arthritic conditions share symptoms, but your description bring to mind the following possibilities to me: rheumatoid arthritis, migratory polyarthritis (often a diagnosis that evolves into another like rheumatoid), or psoriatic arthritis (which can accompany psoriasis). there may be other possiblities, this is just a guess. > 2) Can I work out on the days I feel better? ~~~~~~You should check with your doctor who knows your particular condition, but the answer is usually Yes! We are usually advised to exercise to retain general health, range of motion, and to help reduce pain level. Start slowly, and build up to what you can tolerate. Some people like to exercise in warm water, some like yoga stretches, some walking. The main thing is to keep your general health and to keep those joints moving, so the tendons don't contract. > 3) Can macrolides be used for treatment? ~~~~~~~Some do use them. See www.immed.org under autoimmune conditions for more detailed information. > 4) What are some other names of Minocycline, if any? In Ukraine they do not > use this name. ~~~~~~~There are some alternative names on the list at www.rxlist.com do a search for minocycline. Ask the group if brands that you find in your area are made by the brand-name manufacturer, which is time-release, for better results. > 5) Could my present condition be caused by psoriasis I have? It is not > permanent, however, and covers negligible part of my body, though I've had > it for the past six years. By the way, antibiotic therapy makes it worse. ~~~~~~~Psoriasis can be associated with an arthritis which is similar to rheumatoid arthritis but has some small differences in symptoms. Hopefully, one of our group members with psoriatic arthritis will share experiences with you. The symptoms of arthritis often get worse with antibiotic treatment before improvement is felt. I do not know if that also applies to the psoriasis symptoms. See the rheumatic.org website for a description of the " herxheimer effect " A search on the term " psoriatic arthritis " at any good search site will give you further references. I hope some of this helps, do please let us know how you are doing as you progress with the treatment. Blessings, Liz G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2003 Report Share Posted May 19, 2003 Myra, I'm so sorry that you aren't doing well. Long ago when you told us how you were doing on Kineret, I was so happy for you. I would tell your new rheumatologist anything that you've told us here that you didn't tell him before. Yes, I think you should consider methotrexate. Why didn't your first rheumatologist prescribe it? Was the new rheumatologist at all concerned that you've been on prednisone since last September? Don't worry about overburdening us. There's no danger of that. We're here to listen when you need to tell us what's troubling you. [ ]advise needed It has been a while since I post and is time for an update and I need some ideas before my next doctor’s appointment. Brief History. Dx Sept of 2002 with severe pain and recovering from arthroscopy surgery for the left shoulder. Biopsy reveled server synovitis – synovectomey and the bone was filed down the said it was horrible. HLB B27 positive ANA positive. First Med prednisone, placqunil then 30 days later added Arava. 4 months later added Kineret. Pain and fatigue have been pretty constant. I did have about a 30 day remission with Kineret. I was on Kineret for 5 months placed on Enbrel 2 months ago. So far the only side affect with Enbrel *could* have been the chest and sinus cold I had for 2 1/2 weeks. I am hoping I am kicking that little virus. Pain is in hands, wrists, and knees feet ankles, neck left elbow is affected. Pain still exist in the left shoulder that was operated on yet not to the degree that I was in I do have good range of motion now. I started a swimming program last November swimming at least 3 times a week aiming for 4. Present: Still experienced moderate pain daily. Swimming though the water feels wonder has probably kept range of motion intact but has increased the knee pain. I only see the morning stiffness as not as great with Enbrel. Still on all the other meds. I have been on and off prednison, but now keep it at 10 mgs. (I hesitate to increase this med because of past HPV infection, prednisone makes this virus grow and stay active I have just had an abnormal PAP again I have had a hysterectomy so I do not fear cervical cancer.) I work daily but that is about it. When I swim I am exhausted which carries oven in to the next day. I am always in bed by 9:30 on swim days and sometimes earlier on not swim days. I try to do what I can to keep the fatigue at bay but it does not seem to help. Most Saturday and Sunday I try to rest. I am sole support so working is a must. I have no outside help. Many days the leg pain in screaming with the pain monsters. It is impossible to keep pain at bay and work. I switched to a new Rheumatologist 5 weeks ago. He is very knowledgeable and I really like him. We did all new blood work-up and he called 3 weeks ago and asked for all medical records from the orthopedic and rhematologist be sent to him. My appointment with him is June 13. I had no real problems with my past rhuematologist on except her location and that she was always 45 mins behind schedule. Going there took so much of my time and driving in downtown Atlanta was so stressful. She was very aggressive with my treatment but had little time to discuss things that concerned me. I have written a book, I feel so many times I leave things out for fear of overburdern others. I sometime have trouble expressing myself, I apologize for these things. What would be things I can ask that may help? I have not been on an anti-depressant and I know I am getting more depressed with all that is going on. Should I add Methotrexate? I work and do mainly for this disease. I hoped by doing all I could that something would work. I feel I work for this disease; meds are very expensive even though I have insurance. Please offer any opinion that might help me. Myra, Atlanta, GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2003 Report Share Posted May 20, 2003 Myra, I'm really sorry that you're feeling so bad. I hope your new rheumatologist is one that you can talk to, and finds meds that will make you feel better. Maybe your family would get a better understanding of this disease if they went to the doctor with you. There are lots of us here that DO understand how you feel, especially the hopelessness that comes from constant pain. I'm glad you posted what you did. I'm sure there are a lot of people here that feel the way you do. This despair is why it is so important to find treatment that brings you relief. You didn't mention pain medication. Do you take anything for pain? a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2003 Report Share Posted May 20, 2003 Myra, I like the sounds of the new rheumatologist already. That he's asking for all of your previous records is a good sign. Prednisone has a place in treating RA, but I don't think staying on it indefinitely is a good idea. This is something you must discuss with the new guy. I'm sorry that your family and friends don't understand. It's such a difficult situation to be in. I can relate to that. Part of what helps me deal with it is that I have accepted that they will not be able to fully understand it. Lowered expectations, if you will. Your job situation sounds stressful. Would you consider applying for disability? Perhaps you should discuss that possibility with your physician, too. Or at least explain how difficult it is for you to get to and from work and perform your duties. I know it's not easy to ask for help, but what about going to a church for moral support? What about the Arthritis Foundation in Atlanta: http://www.arthritis.org/Communities/Chapters/Chapter.asp?chapid=19 Don't hold back in discussing what you need to here. We will do our best to take care of the newbies and reinforce the idea that these diseases affect different people in different ways. Besides, newcomers learn a lot from more experienced members. Hang in there, Myra. Re: [ ]advise needed > > , thank you so much for your reply. I don't know why my first Rheumatologist did not suggest methotrexate. I do read all I can of this disease and try to absorb all that goes on at my appointment but it just don't seem like the doctors have to time to listen. We will see with this new one. I know he need all past records to make a good dx. > > I took my self off the prednisone for about two months. My dermatologist wanted me to be free from prednisone before she did some patch tests, I wanted to be free from prednisone for many reason. My first rheumatologist was not happy with this; I think this was the main reason I wanted to seek other opinions. I have gain so much weight with the inactivity and the prednisone, and then I read of the reactivation of the virus, I was just not comfortable with it. My new Rheumatologist confirmed the affect of prednisone and HPV (which very few doc will admit). > > Is a small dose of prendnisone necessary with RA to keep things at bay, and what is a small dose? I am also on Bextra 20 mgs. > > There are so few that understand this disease none of my family and no past friends has, everyone feels I should be whom I was. I fear being suspended of my job. I cannot do as I should, there fore I do all that I can when I am here. Typing is hard and the brain fog and fatigue just adds to my dilemma. With all the Atlanta rain it is taking me over an hour to get home (I live 10 miles from my work) I think this has kept the knees hurting...the stop and go of creeping traffic. > > I feel I should not post because most of you seem to accept and are doing so much better than I am with this disease, and it is so unfair to let newbee's see such a post. > > I just cannot believe who I was just 5 years ago; each year took so much of me away. I know that age should do things to a body but this is not how it should be. I see no reason to keep trying if this is all the life that I will have. I quite my job of 11 years because I thought I was crazy, I just could not go at the pace I had, and my employer would not let me cut back on my job duties. So far I keep trying, and I know it takes time, but for now I just want some down time, just want the world to stop and maybe I could regroup. I did do the councilor thing, it did not help much. I find it hard to ask for help (doing this is not easy) and there is really no one to ask, I am not financially able to pay for help. > > I need to find answers somewhere; I do hope my new doc will give me the time to help me explain what I am going through. > > Myra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2004 Report Share Posted March 29, 2004 Yasha, I use Avonex and just started using LDN 4 days ago. My Primary Care Doctor said it was okay to use both as they compliment each other. My neuro recommends Avonex because it is a once a week shot. So far I notice a change in my emotions, I seem to be not to be as depressed and have a better outlook on life. ----- Original Message ----- From: " yashagrawal " <yashagrawal@...> <low dose naltrexone > Sent: Monday, March 29, 2004 12:04 PM Subject: [low dose naltrexone] Advise needed > 1) Avonex v/s copaxone is the question. My insurance covers both, so > cost is not the issue. The docs advise avonex, mostly because its a > weekly injection as opposed to daily copaxone. They claim that > compliance with the weekly protocol is better. > 2)I know LDN works better with copa, but I have read in a scientific > paper that interferons increase endorphins. Is there anyone who takes > Avonex and LDN ?. Does it work ?. > > Many thanks, based on the MRI I must start treatment soon, even > though I have no symptoms as yet. Any feedback appreciated. > Yash > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 This is the first time I have replied to a post after being diagnosed about a month ago after Optical Neuritis and MRI. I posted questions several times. After extensive research on the CRAB drugs and ldn (I am an engineer and tend to over study things) I decided to do a phone consult with Dr. Bihari. My insurance would also pay for all treatments (at least for now). I decided to take only LDN based on my consult and reading - including going back many months on this site. The reason I chose LDN only was in part the positive commentary (time and time again) on LDN, plus a most informative and complete consult about LDN and MS with Dr. Bahari. I did consider also using Copaxone (which I understood to be compatible with LDN - not clear on the other's compatibility - didn't think so). Dr. Bahari told me that he has had parients on both LDN and Copaxone but that most, over time, stop Copaxone with no noticable effect on their condition (other than eliminating side effects and itching). Clearly this is a very personal, and difficult decision. At least it was for me. But I am quite comfortable with it and am just finishing my first week on LDN at 4.5 mg. My advice would be a phone consult with Dr. Bihari before making your " final " choice. I'd also urge you to read the LDN site completely and review past posts on this site in addition to commentary on other sites about the effectiveness and side effects of the crab drugs. What appears to be defined as " WELL TOLERATED " by many neuros, does not appear to be considered as such by many MS'ers. Hope that helps as I clearly recall how I felt being in your position several short weeks ago. The folks that regularly participate on this site are truely doing a " good " thing (cudos on the petition) as is Dr. Bahari (and some other docs). They certainly have my thanks and admiration, and support with getting LDN recognized as an etremely viable option to the CRAB drugs. Personally I feel it is borders on criminal that LDN has to be stumble upon, in some cases(as in Mine) by shear luck, rather than being presented (clinical trials or not given the low dosage and approval for other uses) as one of the treatment options by the MS society and all neuros. We all need to take primary responsiilty for our health and health care, and that means we should be told all the facts, including LDN, regardless of liability issues (and yes I recognize - big profits). Sorry I got carried away - no way not to get mad - Hope this helps Alan > 1) Avonex v/s copaxone is the question. My insurance covers both, so > cost is not the issue. The docs advise avonex, mostly because its a > weekly injection as opposed to daily copaxone. They claim that > compliance with the weekly protocol is better. > 2)I know LDN works better with copa, but I have read in a scientific > paper that interferons increase endorphins. Is there anyone who takes > Avonex and LDN ?. Does it work ?. > > Many thanks, based on the MRI I must start treatment soon, even > though I have no symptoms as yet. Any feedback appreciated. > Yash Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 I still do not understand. Avonex, Rebif, Betaseron, Copaxone are immunesuppressants. LDN is an immunestimulator. In my eyes (I'm no doctor) the two cannot combine well. And if you read this I pasted below, you wonder who ever came up with suppressants All about Multiple Sclerose Prevailing medical wisdom says that multiple sclerosis is an autoimmune disease - a disease in which the body's immune system turns in on itself. Specifically, it attacks the myelin sheaths that insulate the nerve cells in the brain and spinal cord. This immune system activity produces inflammation similar to what happens in the skin when we get a pimple. Crucially, the inflammation also kills the cells responsible for producing and maintaining the myelin. These cells are called oligodendrocytes and they have long been known to die in large numbers during attacks of MS. The majority of existing treatments for the disease and a fair proportion of new treatments currently in research focus on reducing the inflammation or disabling the immune system cells responsible for it. However, a dramatic piece of new research published in The ls of Neurology threatens to turn this understanding of multiple sclerosis on its head. The study examined twelve brains of people with multiple sclerosis, concentrating on newly forming areas of disease activity called lesions. It found that the oligodendrocytes in these lesions were dying before there were any signs of inflammation. This implies that it is not the inflammation that causes the death of the oligodendrocytes in multiple sclerosis but the other way around. The inflammation occurs in response to the oligodendrocyte cell death. The authors, Barnett and Prineas of the Institute of Clinical Neurosciences at the University of Sydney, Australia don't deny that the inflammation might cause some of the damage seen in multiple sclerosis but they do paint a radically new picture of of the disease. They suggest that the first stage of the development of a new multiple sclerosis lesion is mass suicide of the oligodendrocytes over a relatively small area. This process is called apoptosis or programmed cell death and is a normal response in the human body during growth and repair. If cells were allowed to grow and divide without limits, they would form a cancer. Similarily, cells infected by viruses or cells that are no longer needed by the body will often cell kill themselves. Barnett and Prineas observed oligodendrocytes in which the central nucleus was shrivelling up - a typical sign of a cell committing suicide. Other cells in the brain were also changing. Microglia, another type of maintenance cell which can swallow up dead and dying cells, were forming long extensions ready to engulf the dead and dying oligodendrocytes. Additionally, a group of proteins, called complement, which are responsible for activating the body's rubbish-collecting cells, had collected on the myelin. Crucially, the rubbish-collecting cells of the immune system, the macrophages, had not yet appeared in the lesion. Within one or two days of lesion formation, all the oligodendrocytes had disappeared. The authors suggest that they had been swallowed up by the microglia. The spaces that they had once occupied were now full of liquid forming what is known as edema. The next stage seems to be the invasion of immune system cells. Macrophages now start to appear, together with T cells, the orchestrators of the immune response. These initiate and take part in inflammation. The macrophages start to gobble up the myelin left over by the vanished oligodendrocytes. The final stage would appear to be regeneration. Oligodendrocyte precursor cells, cells that have the ability to develop into new oligodendrocytes, move in to replace the lost cells. They are fed special chemicals called trophic factors by the macrophages and the process of remyelination can begin. It is important to bear in mind that this was a study of only 12 brains and further work needs to be done to validate the studies findings. However, if this work reflects what is actually happening in multiple sclerosis, then its implications are earth shattering: a.. Multiple sclerosis will no longer be an autoimmune disease. A lot of text books are going to have to be rewritten. a.. Treatments that target inflammation will not not addressing the root cause of the diease. This does not mean that they are not effective to some degree but that they can never be as good as treatments that target the death of the oligodendrocytes. a.. All the animal models of multiple sclerosis are poor representations of the disease in that they are all primarily autoimmune models. Perhaps this is why so many treatments that are so effective in mouse models prove to make no difference to multiple sclerosis in humans. For animal models to be valid, they would need to show the kind of disease process described by Barnett and Prineas. a.. Researchers will need to change direction. Whilst work on oligodendrocyte precursor cells becomes more important than ever, work on describing the inflammation process in multiple sclerosis needs to take a back-seat. Importantly, researchers need to find out why oligodendrocytes are dying and what can be done to stop them. Quite how the world of multiple sclerosis research will react to this paper is unclear. Thus far, Barnett and Prineas's paper seems to have been met with a deafening silence which is why I decided to write this piece. Source: Relapsing and remitting multiple sclerosis: Pathology of the newly forming lesion H. Barnett, MBBS, W. Prineas, MBBS * ls of Neurology, Feb 23, 2004 http://www3.interscience.wiley.com/cgi- bin/abstract/107629227/ABSTRACT Copyright © 2004, All About Multiple Sclerosis Chey Quote Link to comment Share on other sites More sharing options...
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