Joanne says:
awww... that is great...
Yeah Nice commercial, wish I was on that commercial. A commercial? You think my post above is a commercial? I post something that has changed my life and this is the reply I get? Why on earth would I put in all the other requirements, what I have looked up, what I have gone through. This is for real. This is what I had. HUMIRA has done this for me! Actually, I am quite sad and disillusioned that some would even think this. I thought I would be helping ANYONE who was thinking about one of the TNF drugs and this is what I get! This is a fresh post because I was feeling so darn great. In fact, this morning, I got up,for the first time in years and walked a mile on the beach. Two months ago I couldn't even drag myself down the stairs. And to Mary Blooms I actually feel defiled. I thought I was doing some good for some to seek relief from this horrible insidious disease that has taken years of my life! Typing this actually brings tears to my eyes at the thoughtlessness and cruelty of people.
TO JOONIE, MARY BLOOM AND GENA ROGERS AND ANYONE ELSE WHO READ MY POST ABOVE ABOUT THE MIRACLE OF HUMIRA. I have gotten over my sadness of your remarks and want you to read the post I did earlier BEFORE taking Humira. It is below. This was a post from a while back that I did when I was questioning these new TNF drugs and I was in horrific pain. I was very cautious about trying to take these drugs because of all the side effects I read, but I did my homework. NEXT WEEK I am actually weaning myself OFF of methotrexate. Now down to 5 mg from 25 mg injectable. The doctor said to stay on them, but I told him sulphasalazine was doing nothing. So I am NOT on that any longer. Next week I will either STOP MTX or go to 2.5 mg, but nothing, repeat nothing has helped like HUMIRA. The book I recommended I saw on Amazon when browsing and it was an excellent guide to choose WHICH TNF I was going to take. THIS WAS THE POST, BELOW, PERHAPS YOU READ IT? IT WAS IN JUNE SOMETIME I POSTED IT ON THE RHEUMATOID ARTHRITIS SITE. YOU WILL ALSO SEE I POSTED A COUPLE OF OTHER THINGS because I was at a stage where nothing helped. I was so desperate for relief copy of previous post.....Am on 25 mg methotrextate. Not doing any good, as well as sulphasalizane. Was good with RA for many years, now that I am older it is getting much worse, as it does with increased age. Have read MIRACLE OF TNF BLOCKERS ARTHRITIS WITHOUT PAIN. this book from Amazon lists everything from A to Z. Wonderful for anyone considering these new biologic drugs Remicade, Humira or Enbrel. I have decided on enbrel because if I DO get something wrong from the supposedly rare side effects, it would not be in my system as long as remicade and also I may not have to take MTX with it, as you HAVE to do with remicade. Enbrel has more side effects than Humira (not much but there is a tad of difference in these drugs. However, sepsis is my main concern since we have a lowered immune system. THEN, I also read that moderate to severe RA victims (for that is what we are) we might get anyway such as lupus, lymphoma, etc. so why not try the Humira. I have heard great things, but as the book also said this is one of the most important decisions you will make. MTX initially worked but now it does not
I'm so happy for you! It's wonderful when we can find something that really works for us! You seem to have a new lease on life, and I applaud you for that. It's invigorating to actually feel so well! May you make the most out of every moment.
Take care, and God bless! I think the reason that some feel this is an advertisement because it is...um...really long and has nearly all the detail one might expect in one of those "patient information" sheets. I believe that Humira really helped Joanne, but the lengthy post seemed to go beyond what most of us write. When Remicade helped me a couple weeks ago, I came on here to say ...yippee...(or whatever) I am feeling good thanks to my infusion of Remicade. Woo-hoo. A lot of us know the ins and outs of biologics and we have chosen (or not chosen) a particular one because of personal preference or doctor recommendation. I guess Joanne's enthusiasm was so thoroughly expressed that it came across as an endorsement for Abbott's Humira rather than a patient's celebration of a med that changed her life for the better. Does anyone else see it that way? MOLLY BEE - If you think this is an ad for Humira, read my past posts. I don't care what anyone takes; it is whatever works for them. You say it is a bit long. Well, before I retired to Florida, I was a past magazine editor/investigative journalist. That may be one of the reasons I expound so much when I write and I like to give all facts, for some, actually do not know all the facts and I thought I was doing a service. Perhaps not. I will not submit a post to this site and just say "YIPPEE!" if I cannot explain to all why I am saying this! What good does it do anyone else! I told you all I went through to try to save some time and to also give some hope. The one thing I did notice and I am now in the process of checking it out further. I did have some PURPURA or bruising. That is common, but it was a big one on the top of my hand. I did find that I used ARNICA gel (and no this is not an ad for arnica. It is a homeopathic gel) for it and it went away faster, but it did last a few weeks. Looks horrible. But I did get some of this bruising on my arms and hands a couple of years ago - it started - and I now blame it on cortisone shots and NSAIDS Try whatever you want,but I did them all AND NOTHING WORKED. The reason I said I took Humira was it was bi monthly instead of every week. I don't want to sit and take infusions and I didn't like what I read about it. Actually I am quite shocked posts have even led down this path. Maybe I should have just said YIPPEE! and left it at that. I thought these posts were to discuss and inform, not to judge others. I'm ecstatic and, to me, that's all that matters. CARPE DIEM! Joanne ouch!! I feel like you are saying that I personally thought you were doing an advertisement. NO.....what I was saying was how I thought your post *could* be perceived. Plus when someone types in BOLD it comes across as yelling. This is an informative and friendly site in which people are expressing lots of feelings. Feelings are not wrong because they are individual expressions of perceptions. I think most people realize that what worked for them may not work for others and tend to be reluctant to bash other regimens of treatment. This is a complex disease with many approaches and modalities of treating it. You made a big deal out of my "yippee" but you obviously missed my entire point. People new to this disease need to hear from people who have found relief for their symptoms. I felt that you may have been truly espousing the merits of Humira (and were not being compensated for doing so) but your post could have been taken otherwise. Molly Bee (who eschews conflict due to a pacifist nature, but who will never back down from what I believe in) MOLLYBEE - I am not going to belabor the point, but when TYPING BOLDLY sounds like yelling! Well, yes it is! I could exclaim this from the rooftops. It is a point of enthusiasm as well! I could dance a jig! Isn't that one of the points of this forum? I certainly would never bash other meds, for I've taken most of them, but merely stated that I was at my wit's end, for nothing else worked FOR ME! Frankly, I think my enthusiasm for how I feel today versus six weeks ago, has been doused with water by your comments. It saddens me. Take it for what it was - an expression of happiness and relief and knowing that I take each day one at a time, for I never know when this may end! I can now travel and do so many things I was just too fatigued to do. It was like being reborn and I wished to share that there is hope. And no, it may not work well for some, but something else may! You say above that people on this forum want to hear about relief others have felt, yet you criticize my expression of joy! Typing emails can often be misinterpreted versus talking person to person. And, since no one knows one another, we do our best. Carpe Diem!
Joanne to MCGUNICH Thank you so very much for your best wishes! It is so wonderful to be alive once again. All those years of taking everything in sight, reading everything I could and nothing happening was taking a toll. May you all find the right combination for this horrible disease,but now I know at least all the proper blood tests to do, although my rheumatologist did not know that we could do a TNF alpha blood test at our local lab. That will truly tell if I am in line with my overactive immune system gone awry! Thanks again Joanne
Hi Joanne, Isn't it great to get a new lease on life? I've spent the last 3.5 years trying to find a combination of meds that work. Finally MXT and Remicade have given me the relief that I've been seeking. Sometimes I'm reluctant to post to the forum and be too enthusiastic about the relief that I've gained from these medications. There is a certain amount of cynicism on this forum about one's enthusiasm for their drug of choice. There have been threads and long discourses on the evil pharma companies and their representatives who envade forum sites to promote their drugs. Apparently, people felt you were one of those pharma representatives. I too did my research as I think most of us do. I would hope that no one blindly accepts a drug without doing the research. I've preached this for the last year or so. Research, research, research. I may end up on Humira if Remicade stops working and I plan on reading the book that you recommended. Every little bit of information that you can acquire is a step in the right direction. May you have continued relief and keep us posted on your progress. Lindy sorry didn't mean to offend you....I was curious...it was written long and lengthy with lots of "disclaimer" like material. Glad humira worked for you....it's Enbril for me. Joanne: My sincere apologies of my post hurt you. I was commenting on the Humira ad - but not meaning my comment to hurt you. I am so sorry. I am very pleased that you are feeling good and definitely should celebrate. Posts like yours should give us all hope - and I know that's what you were trying to do. Please accept my apology. It is wonderful to hear of successes - so thank you and I hope your good health continues forever. Warm Regards, Jen Hey Joanne, I did not mean to offend you. Just was glad that someone actually was able to say Humira was a mircle for them. And while reading your post I flash backed to that Humira commercial. I mean the new Humira commercial really sucks, does not really give me hope. But the one I was talking of kinda did give me hope that one day I would walk upright and be able to keep up with my 2 year old and be able to tend to my 9 year old daughters swim meets. Sorry, if you felt offended.
Thank you all above who posted positive notes. As treefrog put it - it is "life altering". It truly means a lot to me! I'm enjoying my new found health and wish you all the best. My rheumatologist, who keeps up on all the latest seminars, told me there are still new RA drugs in the pipeline and there may be something for everyone. The ONE THING I am grateful for is that OUR DISEASE is common and worth monetary research by the drug companies. If it were not, we'd all be in one big RA pickle! I could segue on to political aspect - that if we concentrated more on our U.S. citizens, perhaps there could be billions and even trillions of dollars made available for more medical research, instead of flushing it away. That would be asking for Utopia. But, I digress. Happy days to you all JoanneJoanne
TNF ALPHA TEST can see how out of whack we are. I asked my doctor because he was just giving me SEC and CRP testing for my blood work. He said only research labs did it. I did not believe that, as is my curious nature, so I called my local lab and they do it routinely. IF WE ARE TO TAKE A TNF DRUG, why would we NOT take a TNF test to measure where we are; even a baseline! As I said, I also do a periodic homocysteine test, mine was quite high and it could cause stroke, heart damage, etc, in anyone. So the test below I want to take and I just gave it to my doctor Friday to request that I wanted it done is the TNF alpha, but it could even be one of the others. Will know shortly. If Humira is working propertly, I should be in a good range. There are at least three different methods of testing blood levels of pro-inflammatory cytokines. The table below shows the standard reference ranges for each type of test. Ideally, arthritis patients should strive to be at or below these cytokine ranges.
Cytokine Ideal Reference Range LabCorp ISI DPC TNF-alpha Less than 8.1 pg/mL 1050 pg/mL 08.1 pg/mL Interleukin-6 Less than 12.0 pg/mL 229 ng/mL 09.7 pg/mL Interleukin-1(b) Less than 15 pg/mL 0150 pg/mL 05 pg/mL Leukotriene B(4) N/A 300750 pg/mL N/A C-reactive protein should also be measured regularly to track levels of inflammation. Levels more than 1.32.0 mg/L indicate that your body is under inflammatory stress. Here below is also a site I gave to someone that has some vitamins, minerals, herbs etc. that could possibly mimic these new TNF biologic drugs. Check it out. It is a great informative site. Joanne. http://www.lef.org/protocols/immune_connective_joint/rheumat oid_arthritis_01.htm TO ALL Sorry above I meant SED tests. Also question about Remicade, when it first came out, and it's all in this terrific book dedicated exclusively to TNF drugs. I love the simple way the book is written. Anyway, Remicade was approved by FDA based on its positive results in combo with MTX. The addition of MTX maximizes treatment benefit while minimizing the risk of infusion reactions. There is a lot more on it. But maybe, they are finding out MORE on Remicade to date. The book was written two years ago. The reason I did not choose Remicade is the book states that: 'An important consideration in Remicade therapy is that the drug has a long half life. This means that it stays in your body for a relatively long time. While this is beneficial in sustaining the drug's effect, it may also pose an increased risk of complications form infection because the drug cannot be eliminated quickly from your system. Staying aware of your general health and calling doctor at first sign of infection is important." That was one of the reasons; the second reason for taking Humira for me was it is a pen syringe and very easy and quick to inject, also done bi monthly. Take care Joanne
WOW!! An Ra doctor told me 2 years ago that I needed not to try Humera until a last resort - Of course he ended up being a jerk when I was so flared up I couldn't take it anymore!! I've been taking MTX for two years now - up and down - I can't believe the shots are better -Thank you for sharing!!! I'm keeping your post on my computer to talk to my dr aboutJoanne, YOU ARE RIGHT! I went to the doctor today and asked about the blood tests and got the very same response, that I would have to go to a teaching/research hospital for them. I called the local lab here when I got home and guess what. The tests ARE available!
Yes, those tests are available and my RD runs them every time I have blood work. I really can not stand any of the commercials for any arthritis medication. I just want to say to all the new people that it is great that Joanne has had much success like that with the humira, however, not all people respond as quickly and as well as Joanne did to humira or any of the other arthritis medications. It is always my hope that whatever medication and course of treatment that anyone chooses that it works well for them and works quickly. Please, I donot want anyone to have any false hopes that they will start whatever they treatment they chose to do and when it fails to work as quickly as what we have seen with Joanne, they give up on it. Please give it some time. These meds normally have to build up in our systems. Then there are cases such as Joonie where it is of very little help at all but it allows her to get out of bed and play with her son. But that is about all it allows. It is up to the individual which arthritis medication is the best for them or for their their lifestyle. In some cases, their is not a choice as these meds can stop working and you have to move on to the next one. All of the biologics basically do the same thing within the body. They are just made up of different ingredients to get the job done. That is why we can go from one biologic to the other when we are trying to find the one that works for us. Please do not disregard any of the biologics when you are searching for a course of treatment. It really isn't that one is better than the other since they are all made to do the same thing. It just really depends on your preferred course of treatment and what has or hasn't worked for you as far as the medications go. I was on humira for a little over a year when it stopped working for me. I once had a pretty great life when it was working for me. Now, I am moving on to remicade infusions in the hopes that it works for me. Just a little note for anyone considering Enbrel...it does come in the pens. Only at the 50mg dose. Some people do not care for the quick pens. Humira and Enbrel both come in regular pre-filled syringes also. Congrats and good luck to you Joanne. I hope that you have continued good results with the humira. CHEESEHEAD Last week, I requested the TNF alpha test from my rheumatologist and today - in the mail I got a script for TNF Alpha blood test. All I did was go into the office, leave a copy of the info that I printed above and asked receptionist to give it to him with my note, for I don't have an appointment with him for a while again. I wonder NOW if he will do it for other patients. Frankly, he was adamant with me. I asked him THREE times sitting with him. I said exactly "so are you SURE that I can't get this TNF test anywhere except a research lab. You mean I have to know someone who owns a research lab? " That is exactly how I said it. He said. 'YES, it cannot be done otherwise.' In fact, he was annoyed that I questioned him more than once! I don't push the line, but I do rub against it. Have to. I will do the test this week. Just did my basic blood test last week and the first time in I can't remember, my SED was 2! I have been noticing however my white cell count is a LITTLE high, has been for last two years, but I checked with a labsite on line and they say it varies all the time. Of course doctor will never admit it to me he was wrong, but that's okay. I got what I wanted. Have to be persistent and, again, do our homework. I wish I had seen this test before I began taking Humira, because I could have done it before and after and got a baseline. Cheesehead: Just see or call your lab; the girl who took my blood work had to ask someone else in the office; so maybe call the lab and ask and they will check. That is how I had to do it. It is too bad your doctor does not like patients coming in armed with information, because that means he has a high ego. My primary care doctor is actually TRAINING people to become doctors, who have "bedside manners". He is getting good money to do this! I found this out two weeks ago. Apparently, there are too many doctors out there that do not know how to work with their patients, to sit and really listen and not to talk. Mine has horrific bedside manners, but I do arm myself and HE DOES give me information and if I don't like it, BUT if I know otherwise, I will show him proof! Quest labs does it for sure. Any good lab will. By the way, I found an excellent site on line that actually EMAILS YOU BACK ON QUESTIONS on your blood work tests. It is sponsored by a grant. First time I actually got some excellent information for FREE. Good information at that. If anyone wants it, let me know. I saw TODAY show this morning and the winning ventriloquist was on with his puppet. He said that one of the FIRST THINGS he is going to do is - "I have a sister that has rheumatoid arthritis and there is a very expensive drug out there she needs. "I told her, get it and give me the bill." Well, we all know what drugs he is talking about. I am very very sad that some cannot afford these drugs to benefit their life, through one reason or another. I even suggest trying a clinical research lab in your area, I know there is a new TNF drug they are working on. Can't think of name of it right now, but it begins with a C. ! Take care Joanne I remembered what the name of the new TNF drug is they are working on. Here it is below. Looks like the same as others, I also want to see if they are experimenting with other TNF's in pill form or otherwise. Maybe they are doing clinical research on these and you can get treatments free; but don't get on the placebo list, if that is part of the testing requirements. Cimziaฎ (peg-antiTNF alpha antibody fragment) is in development for the treatment of rheumatoid arthritis and Crohn's disease. Joanne Well, I read the initial posts and skipped over most of the subsequent ones, and I'll say this: I also began Humira, and I also felt WONDERFUL after the first couple of days...let's fast forward to today, about 8 months later. I think the Humira is wearing off, or I am becoming resistant. Why? Because the shots dont seem to help all that much. So now my rheumy is talking about switching me to Remicade, but only after I try injecting both the Humira and the MTX (happy happy joy joy, especially since I hate needles). So I'll try that out for a while, and let everyone know if that makes a difference. mischifyri: I am very sorry to hear that Humira stopped working for you. Guess that would be me down the road. Why not Enbrel, why is he talking Remicade? I weaned myself OFF of MTX because that stopped working a while back and I could see from my SED and CRP blood work and the PAIN I was in, it was not working for me. So if you go back on MTX will it work... Tomorrow I stop taking MTX completely. However, if you decide to go back ON MTX with the Humira, you also have to decide for yourself - not the rheumatologist - if the MTX is going to work. I found that the MTX pills versus the injections made a difference for me when IT DID work. The only thing is, how long HAVE YOU BEEN OFF been MTX. MAYBE IT WILL BEGIN TO WORK AGAIN! Or, like someone else suggested, do Humira weekly, I hate that also, because some times it leaves a big red mark for two weeks until the NEXT injection. Do you get that? Joanne
I have to share this with the world!
I had a shoulder replaced, I had two deformed joints in my toes. Everytime I woke up and got another pain, I did not know where it would lead. The FATIGUE was indescribable.
Remember, initial site injection and bruising are common. If you don't want to do the injection yourself, and I do recommend the pen syringe, much easier (enbrel does not have that and Remicade is infusion) the nurses will do it at your rheumatologist's office.
I also chose Humira because it is in the system for approximately 14 days, whereas Remicade is in the system longer. It is infused at a clinic.
Reason for that is if I do get ill, or need a procedure that requires me to get off this medication, I know it will be about two weeks.
The drug is expensive. There is no generic. Abbott Drug Company has a SHARE card that helps with the cost to all since they want to promote the drug.
I don't know if Enbrel or Remicade does the same. It is worth every penny to me, as I am now have to pay 100% at this time, but do check the cheapest price available, although, frankly, they do not vary much. Out of all the drugs I've tried throughout the years, nothing really worked. I also had my doubts with taking it, for I was at my wit's end. I had reached the end of the line. Nothing was working. As I said, do your homework.
Also since it a Specialty Drug, you jump through a few hoops, depending on your insurance company, but what irked me the most was this so called Clinical Review Team that my doctor forwarded my case study to, was a clerk! - not a doctor, not even a nurse. In my case, she was the one that gave me the okay with the paperwork. Absolutely ridiculous. She asked me a few questions on my meds, history, what worked, what didn't and gave the thumbs up! Even my rheumatologist said it was "sad".
Good luck!
By the way, glad Humira worked for you. It's nice to see someone with medications that work.
What is a TNF Alpha blood test? Will it show which TNF will help you? Maybe a different one would be better for me?
Thank you for you very detailed information! And I'm so glad you are better!Inflammatory Cytokine Blood Reference Ranges
Thank you SO very much for your information.
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