Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 My Lexi who's 4 has been on an injectable med (first MTX , then Enbrel) for the last 3-4 months, and we've had great luck with giving her the shot at night while she's asleep. We always prepare her the night before and say, " Remember, tonight we'll be giving you your shot while you're sleeping " , but she has never woken up during a shot and only rarely even stirs. The next morning she isn't even aware we gave her the shot! Hope this helps! mom to Lexi, 4 pauci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 In a message dated 12/12/05 9:18:39 PM Central Standard Time, ajaomom@... writes: AJ, I am so sorry to hear that Holly has been flaring so badly.I hope you and the rheumy can come up with a solution quickly. > . Her question when we talk about the enbrel is, > how big is the needle?? my question, is what is the typical amount is it > under an ml?? any thoughts?? The needle is 27 gauge and Enbrel is just like MTX 1ml =25mg and every 1/10 ml is 2.5mg It's usualy dosed at .4mg per 2.2lbs to start out with and a max dose of .8mg per 2.2lbs I can't say Holly would get the full ml 2 x weekly but she most likely would have to take it as 2 shots. At 70lbs you are pushing 25mg 1x weekly. Hugs Becki and 7 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 MARION!!!!! i will call you at home to talk about the enbrel.nate was on it when it was so new that he had to wait nearly a year for the company to make a new *factory* to get enuff product! i have so much i can share with you,about alot of dosing,etc. i WILL CALL SOON! AND YOU KNOW DR.R. & KRISTIN WILL BE RIGHT THERE WITH YOU,as they are for all of us. ilse > > Holly is flaring again, this has been the worst year for her......she has > basically flared everytime that we tried to stop the pred. The rheumie said > she would have tried her on enbrel along time ago if she wasn't so needle > phobic........its awful!!!!!!! every Friday night is awful, it did get some > better recently after spending a few hours at shriners talking about some > coping strategies with child life. Her question when we talk about the enbrel is, > how big is the needle?? my question, is what is the typical amount is it > under an ml?? any thoughts?? this has been hollys worst year over all, > since she was diagnosed, i mean the arthritis has been worse, she has been > sicker and in more pain at times, but this has been a year now that we have not > got her under even a real medicated control. Talk to you soon > > Luv and hugs, > Aj and Holly (11 yrs old, systemic jra since 9/94) > _www.caringbridge.org/visit/holly_ (http://www.caringbridge.org/visit/holly) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 MARION!!!!! i will call you at home to talk about the enbrel.nate was on it when it was so new that he had to wait nearly a year for the company to make a new *factory* to get enuff product! i have so much i can share with you,about alot of dosing,etc. i WILL CALL SOON! AND YOU KNOW DR.R. & KRISTIN WILL BE RIGHT THERE WITH YOU,as they are for all of us. ilse > > Holly is flaring again, this has been the worst year for her......she has > basically flared everytime that we tried to stop the pred. The rheumie said > she would have tried her on enbrel along time ago if she wasn't so needle > phobic........its awful!!!!!!! every Friday night is awful, it did get some > better recently after spending a few hours at shriners talking about some > coping strategies with child life. Her question when we talk about the enbrel is, > how big is the needle?? my question, is what is the typical amount is it > under an ml?? any thoughts?? this has been hollys worst year over all, > since she was diagnosed, i mean the arthritis has been worse, she has been > sicker and in more pain at times, but this has been a year now that we have not > got her under even a real medicated control. Talk to you soon > > Luv and hugs, > Aj and Holly (11 yrs old, systemic jra since 9/94) > _www.caringbridge.org/visit/holly_ (http://www.caringbridge.org/visit/holly) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2005 Report Share Posted December 15, 2005 Just my 2 cents, for Enbrel in general... If your child is big enough for 50 mg a week, DON'T go to the once a week dosing, especially if your child has a problem with needles. The premixed 50mg syringe has a really dull needle, and the preservative in it makes it feel like you are injecting hot sauce into your skin! I was originally on the 50mg and went to the 25 mg twice a week and it is so much better. The needle is less dull, the medication does not burn at all. Just my 2 cents! Hope Miss Holly gets as dramatic results with Enbrel as the rest of us have. If she does, she will actually be glad she is getting her shots because she will be feeling so much better! I'll keep her in my prayers. and Rob 16 Spondy On Wed, 14 Dec 2005 14:03:19 EST Arthurnator@... writes: In a message dated 12/12/05 9:18:39 PM Central Standard Time, ajaomom@... writes: AJ, I am so sorry to hear that Holly has been flaring so badly.I hope you and the rheumy can come up with a solution quickly. > . Her question when we talk about the enbrel is, > how big is the needle?? my question, is what is the typical amount is it > under an ml?? any thoughts?? The needle is 27 gauge and Enbrel is just like MTX 1ml =25mg and every 1/10 ml is 2.5mg It's usualy dosed at .4mg per 2.2lbs to start out with and a max dose of ..8mg per 2.2lbs I can't say Holly would get the full ml 2 x weekly but she most likely would have to take it as 2 shots. At 70lbs you are pushing 25mg 1x weekly. Hugs Becki and 7 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 > > My name is Ian, I am 46 years old, from West Yorkshire UK, diagnosed > with PsA for five years but can trace it back to my teenage years. > have been on MTx and diclofenac but with no significant results. My > Rhumi has suggested Enbrel which I will start on 18th April 2006. I > must admit that I am a little apprehensive about this. > > Would it help or be of interest to the group if I posted a diary of my > experiences with the Enbrel. > > Yours Ian. > > [Editor's Note: By all means, please feel free to do that, Ian, however, every human body is different and each user reacts slightly differently to Enbrel. Your experience may or may not be typical so there possibly won't be broad applicability to your experience. Most of us went through a lot of the fear and apprehension before starting down the road of using the " big gun " medicines, but for those who benefit from them, we wish we had taken the plunge years earlier. Many people on this list, including me, take or have taken Enbrel so please don't hesitate to ask any questions you may have. The one thing I will say is that while there can be side effects, they are extremely rare (other than fatigue) so it is likely that your fears will subside in fairly short order after you start taking it. Hope it works well for you. Kathy F.] > Thank you, Kathy, for your prompt reply, the one thing I was hoping to get some relief from was the fatigue! I cant remember the last day I did not wake up still feeling tired, or in pain for that matter, must have been in my teenage years. Last night every part of my body hurt, Slept most of the night downstairs on the sofa, does anyone else get like that? Well, we are looking forwards to snow in West Yorkshire, only about a foot or so, overnight! It is comforting to be in touch with people who understand how I am feeling right now and can give good advice based on personal experience, which I know is what I need. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 > > My name is Ian, I am 46 years old, from West Yorkshire UK, diagnosed > with PsA for five years but can trace it back to my teenage years. > have been on MTx and diclofenac but with no significant results. My > Rhumi has suggested Enbrel which I will start on 18th April 2006. I > must admit that I am a little apprehensive about this. > > Would it help or be of interest to the group if I posted a diary of my > experiences with the Enbrel. > > Yours Ian. > > [Editor's Note: By all means, please feel free to do that, Ian, however, every human body is different and each user reacts slightly differently to Enbrel. Your experience may or may not be typical so there possibly won't be broad applicability to your experience. Most of us went through a lot of the fear and apprehension before starting down the road of using the " big gun " medicines, but for those who benefit from them, we wish we had taken the plunge years earlier. Many people on this list, including me, take or have taken Enbrel so please don't hesitate to ask any questions you may have. The one thing I will say is that while there can be side effects, they are extremely rare (other than fatigue) so it is likely that your fears will subside in fairly short order after you start taking it. Hope it works well for you. Kathy F.] > Thank you, Kathy, for your prompt reply, the one thing I was hoping to get some relief from was the fatigue! I cant remember the last day I did not wake up still feeling tired, or in pain for that matter, must have been in my teenage years. Last night every part of my body hurt, Slept most of the night downstairs on the sofa, does anyone else get like that? Well, we are looking forwards to snow in West Yorkshire, only about a foot or so, overnight! It is comforting to be in touch with people who understand how I am feeling right now and can give good advice based on personal experience, which I know is what I need. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 Hi Ian my name is Lynn and I live in Scotland at the moment I am on methotrexate but the last two weeks only way I can put it has been like hell. I don't feel it is working for me. It's good to hear you have a good rhumey who is putting you on something else. The last two weeks I have been in constant pain or achey can't get comfy or walking is nightmare. My mum read somewhere walking aids can help so she got me a walking stick to help it does a little but I am so exhuasted and not sleeping properly ( because of the pain). Looking forwardto hearing more from you Lynn. --------------------------------- Messenger NEW - crystal clear PC to PC calling worldwide with voicemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 > Good basic nutrition is very important to fight the good fight... Very sound advice pearl! > Pearl (week 2 on Enbrel) does anyone know how long before i can > tell this is working? I am in a similar space, starting enbrel in a couple weeks. I've read and heard that some folks get relief right away, some it takes 3-6 months, most fall somewhere in between. Cheers - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 > > > > Hi Ian my name is Lynn and I live in Scotland at the moment I am on methotrexate but the last two weeks only way I can put it has been like hell. I don't feel it is working for me. It's good to hear you have a good rhumey who is putting you on something else. The last two weeks I have been in constant pain or achey can't get comfy or walking is nightmare. My mum read somewhere walking aids can help so she got me a walking stick to help it does a little but I am so exhuasted and not sleeping properly ( because of the pain). Looking forwardto hearing more from you Lynn. > > --------------------------------- > Messenger NEW - crystal clear PC to PC calling worldwide with voicemail > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 > Slept most of the night downstairs on the sofa, does > anyone else get like that? Definitely. I've been sleeping mostly in an easy chair for a couple months now. Sure do look forward to time in my nice comfy bed.... someday soon I hope (g)... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Hi Ian Lynn here. The only way that I can use my walking stick is by using wrist splints that the hospital gave me but that's starting to get a bit painfull as my elbow has started clicking and all my muscles in my legs and arms are getting pretty painfull again. --------------------------------- Messenger NEW - crystal clear PC to PC calling worldwide with voicemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 Hi Susie The physical stress of surgery can certainly activate symptoms, and then again sometimes this disease is just unpredictable. I just took my first dose of enbrel yesterday, and I am currently on Prednisone 10mg a day - started at 20. Even with the prednisone, symptoms didn't get better immediately, took a few days for some result and then a bit better over the next couple of weeks. Local joint injections of prednisone like drugs only partially helped for a few weeks, so I had to go on the pills. It has to be up to your doc to decide whether to increase the dose of your enbrel or change to another similar drug. A number of group members have switched from enbrel to humira and vice versa when the first drug stopped working. So your doc is keeping your best interests in mind. Very often if one of the anti TNF drugs doesn't work, another will. Yes, it can be very frustrating - I still am not used to the idea that most of these heavier arthritis drugs can take 3-6 months to work. In the meantime you might want to ask your doc for a referal to a pain specialist - hopefully then you can get your pain down to a level that is not as out of control and frustrating until the other drugs start having an effect. Best regards - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2006 Report Share Posted April 5, 2006 > , thank you for your reply. It was helpful and reassuring. This group has always been so great! Susie > Hi Susie > > The physical stress of surgery can certainly activate symptoms, and > then again sometimes this disease is just unpredictable. I just took > my first dose of enbrel yesterday, and I am currently on Prednisone > 10mg a day - started at 20. Even with the prednisone, symptoms didn't > get better immediately, took a few days for some result and then a bit > better over the next couple of weeks. Local joint injections of > prednisone like drugs only partially helped for a few weeks, so I had > to go on the pills. > > It has to be up to your doc to decide whether to increase the dose of > your enbrel or change to another similar drug. A number of group > members have switched from enbrel to humira and vice versa when the > first drug stopped working. So your doc is keeping your best interests > in mind. Very often if one of the anti TNF drugs doesn't work, another > will. > > Yes, it can be very frustrating - I still am not used to the idea that > most of these heavier arthritis drugs can take 3-6 months to work. In > the meantime you might want to ask your doc for a referal to a pain > specialist - hopefully then you can get your pain down to a level that > is not as out of control and frustrating until the other drugs start > having an effect. > > Best regards - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2006 Report Share Posted May 25, 2006 Hi Meg Congrats on trying enbrel. I hope it works well for you. Putting on my stethoscope ( I'm a retired doc ) - in all honesty, doctors are only now *starting* to understand autoimmune disorders. In early years the best they could do was categorize what they thought they saw in patients. Many folks do not have the " pure " " traditional " forms of lupus, sjogrens, ra, as, pa, ibs, etc etc. I believe we are looking at a spectrum of disease effects with many common causative factors. This has been both confusing and confounding in the training of docs to handle autoimmune patients. I have had at least a dozen different diagnosis / explanations for my aches and pains over the years, and not once was an autoimmune disorder considered until last year. Don't let one of their category names frighten you too much... I've been on enbrel for 2 months now. It hasn't been the complete magic bullit, but it has helped a lot. I also don't think I'm over suppressed, twice this month I've been exposed to a cold bug, and both times I had symptoms for a few days and then it was over. That could be you too... Just be vigilant about fevers / cuts / scrapes and don't be too stoic - let your doc know earlier rather than later about infections... Best of luck! - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2006 Report Share Posted May 25, 2006 and Meg, I was glad to read your posts. I have autoimmune problems but except for knowing the things I have had, no one knows the real cause. I am Hla-B27 positive and have a lot of different syndromes. My son who is 32 finally went to a rheumatologist after my begging for years. He was born with asthma. The rheumy diagnosed him with AS immediately; said there was no reason to test for the gene, and started him on Enbrel. Greg was already in Stage 3. He nearly fainted when he was told his co pay but fortunately we located a place for assistance with that. It's the one Montel advertises; PAP. I saw the rheumy today and he said Greg has to take the medication. He gaves me shots from the base of my skull to the lower part of my buttocks. I have been having more problems with my knees due to Reiters so he injected those places also. I think it was Demerol. It certainly helps the spasms and pain. Neurologist has also done tests on me recently and is leaning toward thinking I now have diabetes. I will have the glucose tolerance test next week. I really hope that it is not the case; however, I have neuropathy from the tips of my toes to my knees and from the ends of my fingers to my elbows. Lovely, one more thing to deal with. My first round of iritis was at Age 10. My eye was dilated for a year because the docs didn't know what to do with me. This group is so good for information and encouragement. Please don't give up. Maybe they will find the answers one day. Jane ----- Original Message ----- > Hi Meg > Congrats on trying enbrel. I hope it works well for you. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 Gee, thanks Jane! Glad you found my blatherings helpful!!! Actually, if diabetes is in the mix of things in your life, diagnosis and treatment could help you a *lot*. For diabetics who get neuropathy, good sugar control helps regains some nerve function and slows down or eliminates furthur progression. And this improvement / prevention happens in a high percentage of patients. So although it's a pain to deal with another issue, if you really do have it dealing with it *will* help how you feel, imo... I know exactly the kinds of shots you receive - I used to give them!!! Sorry you have to go through it, they usually help. Some day soon I have confidence docs will be able to deliver similar relief without so many needle sticks. I was originally diagnosed with atypical Reiter's in the late 70s. Mine came a few months after a few run ins with Typhoid while living in the tropics. From my perspective - totally biased - I think I'm 50% Reiters and 50% PA symptom-wise. The names don't make too much difference these days, the meds are the same... Best regards - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 , thanks for responding. I had iritis at 10 years of age, was a victim of incest, and probably was given chlamydia near the same time. My whole life has been a struggle. I don't think I could name all the " itis " I have had. I will be glad to get this second glucose tolerance test behind me. I may be diabetic. My mother is Type I and my father's mother was Type I. If my worst fears are correct though, my step dad, a Baptist preacher, was poisoning me and my mother a few years ago with arsenic. Mother almost died and has no idea today; she has gained her weight back since his death and looks great at 78 years of age. I stole the insulin from the refrigerator while she lay totally paralyzed at the hospital. Step dad never said a word. He just taped his injectible B 12 to the refrigerator and quietly replaced the insulin with a new bottle. My hematologist at the time thought I was being poisoned but I was only in their home on an infrequent basis. I do carry the gene and my younger son now has been diagnosed with AS; that's added to the asthma he has always had. My older son lives with an incurable virus. God said he wouldn't put more on us that we could bear but I think I am almost there. Please pray for me. If I remember correctly you are a doctor. What do you know about Bipolar II? Thanks Jane Re: Enbrel > Gee, thanks Jane! Glad you found my blatherings helpful!!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 Hi Oh how right you are. Adding Diabetes of any type to the mix with AS/Reiters and all their other brother and sister illnesses, definitely does make life much more difficult but mainly to the doctors and nurses. Just think of a patient presented at the ER with burning Neuropathic pain with numbness going down both legs and that pins and needles feeling in your feet. This can be diabetes or Cauda Equina Syndrom and both of those are diseases you really don't wan't or need. Especially in folks with long standing cases of Ankylosing Spondylitys. To make the diagnosis much, much more harder are all the drugs we are on that have very nasty side effects in the same areas. Of course their biggest problem as I see it, is a well informed patient who does research things. Fr. Dave probably easier that the +/- Re: Enbrel Gee, thanks Jane! Glad you found my blatherings helpful!!! Actually, if diabetes is in the mix of things in your life, diagnosis and treatment could help you a *lot*. For diabetics who get neuropathy, good sugar control helps regains some nerve function and slows down or eliminates furthur progression. And this improvement / prevention happens in a high percentage of patients. So although it's a pain to deal with another issue, if you really do have it dealing with it *will* help how you feel, imo... I know exactly the kinds of shots you receive - I used to give them!!! Sorry you have to go through it, they usually help. Some day soon I have confidence docs will be able to deliver similar relief without so many needle sticks. I was originally diagnosed with atypical Reiter's in the late 70s. Mine came a few months after a few run ins with Typhoid while living in the tropics. From my perspective - totally biased - I think I'm 50% Reiters and 50% PA symptom-wise. The names don't make too much difference these days, the meds are the same... Best regards - ------------------------------------------------- Post message: Set your subscription to digest (one email a day) / Contributions to RISG.ORG are tax deductible. Credit Card or PayPal http://www.risg.org/contributions.htm You're Not Alone! http://www.risg.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2006 Report Share Posted May 27, 2006 Hi Jane My oh my, I'm so sorry, you have had way way more than your share of adventure... I've been out of active practice for more than a decade, psych wasn't my field, so I don't know a lot about the subtleties of bipolar disorders other than a patient will alternate between too stimulated and too depressed. Way back then all that was offered was lithium maintenance and heavy tranquilizers during manic periods. My thoughts and prayers are with you... - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2006 Report Share Posted May 27, 2006 Dave - you crack me up!!!!! ROTF - ouch(g) You are sooooooo right! Methinks you are feeling a bit better.... Cheers - > Of course their biggest problem as I see it, is a well informed patient who does research things. < Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2006 Report Share Posted May 28, 2006 Thanks, . I recently had my first and only manic episode but my medication for depression had been changed to Cymbalta. I thought the medicine caused the problem. I have now seen a psych and he thinks I possibly have Bipolar II. I never knew there was such a thing. I always thought it would be fun to have at least one high. LOL There is no certainty in a psych diagnosis; I have been told major depression recurrent, dysthimia, and post traumatic stress. My body is always in a state of fight or flight. Tears stay near the surface and I wonder if the depression and anxiety bring on a lot of the physical problems. Oh, well. My life has been different. Thank you, Jane Re: Enbrel > Hi Jane > My oh my, I'm so sorry, you have had way way more than your share Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2006 Report Share Posted May 28, 2006 Thank *you* Jane - you have taught me something! Best wishes - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2006 Report Share Posted May 28, 2006 Hi again In my last reply in this exchange I did not put in what I wanted to put in. You wrote: I was originally diagnosed with atypical Reiter's in the late 70s. Mine came a few months after a few run ins with Typhoid while living in the tropics. From my perspective - totally biased - I think I'm 50% Reiters and 50% PA symptom-wise. The names don't make too much difference these days, the meds are the same... I have begun to feel that there is only one disease, Spondyloarthropathy Syndrome, and folks presenting with one of the Spondy's will have more than one other showing up. For instance for me, AS, RA, Reiter's and PA. For many years folks thought that the only real bad arthritis was Rheumatoid Arthritis and tended to look at the other Spondy's as more or less a wear related problem and lumped them in with Arthritis. One back specialist I know was doing a radio talk show I was listening to while driving along the highway, before cellular, so I called in with my Mobile Radio and asked him about AS. He then said thanks and went on to describe the Spondy's that were not a wear problem but an actual disease of the spine and connecting tissue. He later thanked me for bringing the subject up as not many folks knew about Spondy's. I should also add that a well informed patient should never go into a doctor's office asking for things as if we know it all. That will get you a new doctor, or reputation as " one of those " , as it does make them mad, and I can't blame them. Don't come on like you know more than they know. That is why I get along well with all my doctors. Blessings Fr. Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2006 Report Share Posted May 28, 2006 Jane > My life has been different < You should write a book! Quote Link to comment Share on other sites More sharing options...
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