Guest guest Posted September 17, 2000 Report Share Posted September 17, 2000 I think what Fran is saying is that she is on the block and replace regimen where you take both thyroid hormone and an ATD. Early Japanese studies show a >90% remission with this approach. Although U.S. doctors don't get such spectacular results, this protocol is thought to keep patients at a more even keel. when weaning off them, the synthroid is tapered off first, I think, but I'd check with your doctor first to see what he or she has in mind. A friend on another board was hypo after a while on both, and finally got off both simultaneously to see where she was at. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2003 Report Share Posted December 24, 2003 Dear Fran, Your last post reminded me of the phrase, " There is always an answer. The problem is, sometimes it's No. " At least you (apparently) have a good pain management doc, so I will hope you will find help in that manner. I wanted to wish you, and everyone else, good fortune at this time of year, and that you are finding enjoyment at this time of year (whether it be Christmas, or Hannukah, or something else). Wishing all the best, > Dear , > > I am on Effexor 75mg twice a day and have been for years due to the fact > they thought I had fibromyalgia for 20 years. I also take Zanaflex at > bedtime to relieve the muscle stress. I've tried to think of a common > denominator connecting the PA and the extreme pain, but there doesn't seem > to be one. I first got sick due to a fall and injuring my jaw and it has > been down hill ever since. > > I've thought I've done the shotgun method of trying everything, except > actually buying a shotgun. At times it seems to be the only really curable > answer...lol...I'm kidding so please don't think I'm suicidal as well. I > have to admit I've been down or depressed since the pain has been bad, but I > think it would be almost nutty to be any other way. I used to think > massage therapy helped me, but I'm not sure now I could even have someone > touch me. I always got a massage once a week for about 2 years, but then > the pain got really bad and I couldn't even count on making the > appointments. I felt bad canceling so many times that I just quit going. > I've been thinking of trying to have someone come to the house and maybe I > could stand that better. I'm not sure. At least I can try that and know it > won't set me back too many days if it doesn't help. > > As far as people in my life, I lost my best friend about 3 years ago and I > still miss her everyday. The arthritis had started way before she died > though, so I know she wasn't the trigger. Though I'm sure all the stress > didn't help my situation any. I think I've coped well with the circumstances > since she basically ended her life due to chronic pain. That was the main > reason I went into pain management when the pain got bad because I realized > she had been self medicating and making her situation worse. I didn't want > that to happen to me or my family and I know pain management has kept me > sane and alive the past 3 years. > > The only thing I can tell really increases the pain is increasing my > activity. If I push myself, and say put the dishes in the dishwasher (I > know that is pretty pathetic, but it's a big deal these days for me.) the > pain goes off the chart. Standing or walking is basically hell as the > bottom of my feet are covered with bone spurs. I've thought about seeing > someone to try and get them removed, but I don't know if they can take that > many off at one time. I also dread the idea of surgery and my > rheumatologist said a lot of times they just grow back. I also got much > worse after surgery on my jaw to inspect the damage and clean the joint. I > think the surgeon irritated the nerves in my face and ever since then my jaw > pain has gone off the scale. Luckily unless I get sick,(I got the killer > flu last week and managed with companzine to get along ok..) or grind my > teeth badly at night my jaw is normally just a dull ache with occasional > sharp pains. It does cause a lot of migraines and neck pain. > > As sorry as it is to write this down, it just seems like the pain has gotten > worse every year since this whole nightmare began. I really do try and stay > positive. I read as much as I can and even took up glass art work when I > can use my hands. I haven't tried acupuncture and that is something I am > willing to try but haven't found a good doctor in my area yet. My pain > doctor is going to be doing biofeedback in the next 6 months and I told him > I would be really interested to try that as well. I just don't see how that > is going to stop the spreading of the bone spurs, the fusing of the joints > and all the rest, but I was hoping it might help the pain some. > > I'm sorry if this seems negative, but I really think I'm going to pass on > Humira even with how miserable I am now. I just can't take the chance of my > heart going into failure again and now I have permanent damage from the > Enbrel trial. Thanks for thinking of me and I know you are always here. I > knew not too many people would be on line this time of year, but felt like > writing anyway. Thanks again, Fran in Florida > [ ] > > > Concerned about Enbrel, Humira, and being allergic to new drugs. > > > Hi, I was hoping someone could give me some advice. I'm in the middle of > making up my mind about trying Humira. So far the only thing that is > helping my incredible PA is prednisone. I currently am taking 15mg a day > and recently had to increase it after trying unsuccessfully again to get > off > the drug. I was on 20 mg and at one point got down to 7.5mg, but the > flares > at that point became unbearable. > > Here's my problem, or at least one of them..Every time I've taken > Mexotrextrate or Enbrel I had severe allergic reactions. I had difficulty > breathing, extreme edema developed in my legs and feet and face, and my > lymph nodes were swollen and sore beyond belief. The reactions were > almost > identical but Enbrel of course was worse since I had injected 5 times > before > I realized just how bad the side effects were. The other serious area of > concern is before I went on Enbrel I had a chest X-ray and was told it was > normal. After I developed all the side effects a 2nd X-ray, only 6 weeks > apart, showed I had pulmonary edema and congestive heart failure with a > slight enlarging of my heart. > > When I sent away for all the literature on Humira I'm very concerned > because > it states in the warnings it can cause Congestive heart failure, even > though > the chances are very rare. I personally think my heart problems were from > the Enbrel, but don't know how I can prove it. From what I understand, > Enbrel is now being tested for treatment of congestive heart failure. > Which > makes no sense to me... The other possibility is the heart problems are > the > result of being on 20mg of prednisone for a year, but my doctors have told > me that is very unlikely. But they tend to say everything is very > unlikely > when it comes to bad reactions. > > So far everything I've tried for PA hasn't helped. I've tried Plaquinel, > Sulfasuldine, Nalfon, Vioxx, and Celebrex. I feel like I'm running out of > options and my bones and joints are degrading as fast as we speak. I can > hardly walk now and have to use a wheelchair whenever I leave the house. > Life has definitely gone down hill in the last 5 years. I'm only 48 and > would like a few more years of a somewhat normal life and I realize that > is > being selfish with everyone who suffers out there. > > If anyone has any advice, I see my doctor after Christmas and I know he > wants an answer on the Humira. I know it works wonders for some people > and > I sure wish it would be the case as well for me, but it is only taken once > every two weeks, so it will take longer for it to leave my system if I do > have a bad reaction. > > Any words of wisdom? > > Fran in Florida > > > [Editor's Note: Fran, I am sorry to hear things have progressed to the > degree they have, and that the PA is being so aggressive. Perhaps (let us > hope) you are just setting a record for the length of a flare, and it will > soon subside. > > Toward that end: Can you think of anything--and I mean ANYthing (med(s), > people, conditions, events, animals, climate, habits, eats & drinks, > emotional, etc., etc.--that has been co-extant (i.e., coincident with the > approximate length), OR absent for that period,, with the increased > aggressiveness of the PA? > > SOMEthing has likely changed--and that would include at any level, all the > way 'round to the ordinarily undetectable, biochemically molecular (and > therefore extremely difficult to ferret out) level. That is, at least, the > one knowable (even if not detectable) thing: SOMEthing changed. > > Sorry to have to go that far " back " in the process; I can't think of > where/what else to start (with). And what conclusion can we come up with, > assuming that is the case? Change something (although we don't know what, > specifically), again. {There are the " non-traditional " treatments, too (not > that I advocate them--just that I wouldn't rule anything out right now): > hypnosis, acupuncture, etc.} I'd work out a list--starting with the most > likely culprits--and, " shotgun " method, change as many as I could, until > something worked. > > And that's what you & your doc are doing. Will Humira be the answer? > That's not knowable, without trying it. The likelihood it will be the answer > is somewhat lessened by your response to Enbrel (another biologic). You > didn't mention Remicade; has that been considered? (Of course, it's a > biologic too...) > > What dose(s) of methotrexate have you tried? > > How about the psychotropic drugs (SSRI antidepresssants, etc.)? If you're > not on any, it is surely worth a try. If you haven't, you might discuss > these drugs with your doc. > > Tell us more about your situation; maybe something will give someone a > helpful idea. Especially, let us know how the doc visit goes, and what > direction you're planning on taking. > > D.] > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Dear JudiRose, Thank you so much for writing. I really didn't mean to make my email sound so overwhelming or painfully hard to read. Please don't think that my life is only filled with thorns and no roses. I consider myself one of the luckiest people alive. I know that may sound strange considering how bad my arthritis, RSD, asthma, facial pain, and like you said the list goes on, are. For one thing, I had my youth pretty much pain free, so like you I too feel very deeply for the mother of the nine year old. My daughter has fibromyalgia and depression so severe she hasn't really been able to lead a normal life or do normal teenager things she she became ill at the age of 13. (I would take on her pain for a 100 lifetimes just to give her one lifetime without this miserable disease.) She never really had a chance to grown up, but she made the best of a bad situation too. She couldn't attend regular high school due to their insane attendance requirements, regardless of her learning ability. So she dropped out at 16, got her GED, and enrolled in community college where she could schedule her classes in the evenings when her pain isn't so severe. So far she has completed almost 2 years of college and is planning on becoming a teacher to help other children with health issues and hopefully teach or write. She is one of my true roses and keeps me going and won't let me give up. My other daughter just graduated from college and is a another rose in my life. She comes home (she lives 2 hours away) and cooks, cleans and takes me to doctor appointments. She starts her new job next week and is going to working on a program with the government that enriches the lives of newborns and young mothers. So again I'm really lucky to have another wonderful daughter. My husband is a real sweetie too. He bought me a laptop for Christmas to use when I can't sit up long, but want to get on the internet and we've loved each other totally for 27 years. So see my life is really blessed and that is just my family, but the most important of all. I do understand about not wanting to read about someone worse than you, especially if you find yourself thinking that could be you in a few years. But there is always someone worse off than me. Normally that's all it takes to make me quit feeling sorry for myself. Or I think of someone all alone with their illness and count my blessings again to have my family. Don't get me wrong, there are days where I get very depressed and down. I wonder at times if the pain if worth it and if I am too much strain on my family. They have told me time and time again they would rather struggle along with me, then without me. So as long as I know everyone feels that way I could never leave them. Plus that's never been a real option for me anyway. I also don't think the group has avoided me. At first I wasn't getting any real response, except from who is a Wonderful Moderator and is so filled with knowledge and compassion. Any group would be lucky to have him as one of their leaders. I know people are busy and I also know that some people might have a mild case and hopefully very few are as bad off as me. The amount of knowledge of this strange disease is tremendous in the group as well. So many of my symptoms that my doctors all told me didn't really relate to PA, I've seen listed as symptoms with other members. So I've felt like I'm with the right group right from the start. Well Judith, I'm writing this half asleep so I'm going to sign off. Again thanks so much for writing. Your letter really touched me too and I really appreciate all the support and your prayers. Sincerely, Fran. PS. You have beautiful name. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2005 Report Share Posted July 28, 2005 Thanks so much for all your kind words. Just to list them, I'm also on Celebrex twice a day, which makes me a bit nauseous, but helps, Mirapex, a Parkinsons drug that I'm kinda the test bunny for in our area, I found a study online that said in 14 weeks it helped with tenderpoints and fatique in FM, and Lexapro, because let's face it, when you hurt all the time it's easy to get sad. I also try to avoid stress at all costs. I was on Arava for 5 years with great results, then began having lots of pain that could of meant liver damage and it scared me off of them. I have decided thanks to the advise of everyone here to start tomorrow on my search for a new doc. It's time for a change. hugs to all Britt Fran Mishler <fran@...> wrote: Dear Britt, A lot of us have to take pain medication to get through the day. I get so frustrated when I hear of doctors like yours who won't listen to your pleas for help. Doctors have a lot of pressure on them these days from patients and from the government on writing narcotic drugs. The best solution for me was to find a good pain management doctor. He really did save my life. I know you probably think it's for drug addicts or for people dying from cancer, but there are a lot of people in chronic pain like you and life wouldn't be worth living without some relief. Kathy is right that a good anti-inflammatory or the right arthritis medication can almost take away the need for painkillers. My problem was I wasn't able to take most of them on the market. Luckily, I've been on Arava now for almost a year without any side effects.knock on wood. For me, the only way I could stop the painkillers would be to go on a high dose of predinsone and that has worse side effects than morphine. Seeing another doctor is a great idea. I have three. My rheumatologist, my family doctor, and my pain doctor. They all know what each other are doing and this has worked the best for me. It has taken a long time to get to this point though. So try not to get discouraged. It all takes time on trying the medications and finding the right doctor for your needs. Just remember you have the right to have a doctor treat your pain! There is nothing wrong with you for needing help or some pain relief. Like you said, there are people who due to their pain can't leave their home, and pain relief can let you get your life back again. There are several sites on line on chronic pain and they also helped me get started in my search for help. I think some are listed on our website. If you want some extra ones, I can send them to you directly. Just don't give up. I know too many people who have become victims of chronic pain and the sooner you get it under control the better you will feel. Take care and I hope you find some relief soon. By the way, it's great that Ultracet helps your pain. Most doctors consider that low on the range of painkillers. I know my doctors would be thrilled if that was all I needed, so I can't imagine him restricting you to only 4 refills a year. It 's really time to start looking for better care. Hang in there. Love, Fran in Florida thanks LeAnn...my doc has finally put me on a non-narcotic pain killer..ultracet. I had to bring in my roommate to explain the pain I was in. After she informed her I was begging daily for her to just cut off my right hand, just take it off, and that I had just spent three days in bed because I couldn't put any pressure on my feet she got the picture. However I only get four refills per year....considering I have to take it morning and night just to move and sleep without constant pain, that isn't going to help. I even told my doc that all the advise I get online is to be on pain meds she still disagrees, says it will only make me a shut in. All I can say is without pain killers I am the shut in, on them I get out more often and have even joined an animal rescue group. I've been on SSI since January and was under the impression my life was pretty much over...nothing to look forward to but more pain, more swollen joints, (starting to look like a bumpy dinasaur lately), now I think I'll be okay, with new meds, a better diet, walking when I can and the support of great people like you guys. The sun is shinning again. Thanks also for the freedom to vent when I need it. Sometimes the people around me just don't want to hear it anymore. Hope all is well with all you out there, Britt [Editor's Note: Painkillers alone are not the answer. You should also be treating the source of the pain - typically inflammation and an immune system gone amok. There are many medications today that treat our immune systems, including Methotrexate, Arava, Enbrel, Remicade and Humira. If you reduce the source of the pain, the need for painkillers will be lessened. Perhaps you should talk to your doctor about your other treatment options or maybe you need to find a new doctor. Wishing you wellness, Kathy F.] DeafEskie <DeafEskie@...> wrote: For Britt and some of the other newbies.... Britt, Fibromyalgia almost has a mind of its own. It's probably why you have so many aches " all over " . Conginitive thinking is affected too (this is a CNS disorder). This with PA is a double whammy. I know because I have both. Kathy is right, you DO need to get to a better doctor. NSAIDS can destroy your stomach. You NEED pain medications. Start with the cox-2 inhibitors and/or antidepressants. Then if that does not work, go the Opiod route. For many with FMS, the Opiods is the only answer. Good luck and I hope you find the doctor you need, so you can have a somewhat reasonable life. Please keep us posted, and feel free to vent all you wish. LeAnn in OK P since 1985, PA since 1999, dxed with FMS/MPS 2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 Dawn Here is the link for Dr. Kastner: http://www.niams.nih.gov/rtbc/labs_branches/ggb/personnel/kastnerd.htm http://www.niams.nih.gov/rtbc/labs_branches/ocd/index.htm#fever These are the available studies and this is the specific one for Periodic Fevers when NO genetic studies have been done: http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_94-AR-0105.html @familial@mediterranean Mailing and telephone info etc... is below When you go back to the specialist... prepare for NIH. Ask him/her to dictate a letter requesting your child to consult with Dr. Kastner and ask him to give a brief summary of your little one's history. Get ALL pertinent lab data especially those results that are abnormal in the past during fever episodes.... Any other testing that the specialist may have done... to rule out other disorders should be included. TAKE them WITH YOU and make copies and submit them to NIH... Fax or mail... (see below) all correspondence goes to Plass. If you decided to do this... call after you send to make sure the medical records get to Nikki. You should contact Plass NOT Kastner.... to request participation in the study 94-AR-0105 Kastner, M.D., Ph.D. Chief, Genetics and Genomics Branch Genetics and Genomics Branch Phone: 301- 496-8364 Fax: 301-402-0012 Building 10, 9N214 E-mail: kastnerd@... Plass Pediatric Research RN for Kastner plassn@... or 888-996-4267, ext. 3 Beverly Barham, RN, BSN ADULT Periodic Fever Research RN Nurse Specialist, Research Building 10, 9S209 10 Center Drive, MSC 1828 Bethesda, land 20892-1828 301-594-2494 or 888-996-4267, ext 1 Fax 301-480-0676 Hope this helps... ALL of this info is under the file section and the link section at the website!! Best of Luck Fran Fran A Bulone Mom to ph 6 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
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