Guest guest Posted March 3, 2003 Report Share Posted March 3, 2003 In a message dated 3/3/2003 1:37:48 AM Eastern Standard Time, tboelhauf@... writes: > I did not become sick to my stomach, but the fatigue > was horrible. Mine lasted about 3 weeks and then > subsided considerably. I am still tired (one of the > perks of having PA), but not like the first few weeks > on Enbrel Well, I just had my first Embrel injection about an hour and a half ago. The doctor gave me the first one. I will have to do it myself on Thursday. I had no site reaction at all this time. When does the fatigue thing start if it is going to happen? My big concern was that I have a sore throat and slightly swollen glands and a runny nose. He still said to start the Embrel. Do you think he should have been more cautious? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2003 Report Share Posted March 3, 2003 Janet, I never got any fatigue with it. The nurse that trained me said that having cold was okay, as long as I didn't develop a fever or an infection with it. If I did, then to go off of the Enbrel until I was well, and then restart it. Carol in Vancouver, Washington In a message dated 3/3/03 10:16:48 AM Pacific Standard Time, fam24@... writes: > When does the fatigue thing start if > it is going to happen? My big concern was that I have a sore throat and > slightly swollen glands and a runny nose. He still said to start the > Embrel. > Do you think he should have been more cautious? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2003 Report Share Posted March 3, 2003 Hi Janet, My Dr. REFUSED to start me on Enbrel when I had a slight cold. I think he might be a little overly cautious, but it still made me feel safe. I think you will be fine. If the cold starts to get WORSE, make sure you call him/her! In a message dated 3/3/2003 12:24:01 PM Eastern Standard Time, fam24 writes: > My big concern was that I have a sore throat and > slightly swollen glands and a runny nose. He still said to > start the Embrel. > Do you think he should have been more cautious? > Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 In a message dated 3/6/2003 3:48:54 AM Eastern Standard Time, cacombe@... writes: > Janet, I haven't had anything like that. Have you called your rheumy yet? > > Carol in Vancouver, Washington I had the first shot MOnday by my rheumy and face flushed that day and Tuesday. Wednesday I was fine and then I gave myself my first shot this morning.(Thursday) It actually didn't hurt a bit. By the afternoon my face was flushing again so I called my rhuemy. He said I must have a sensitivity to it but to hang in there. I decided to take Clarinex and it seems to have helped quite a bit. I guess I am allergic to something in the Embrel. I hope it doesn't get worse and I have to stop. So far there is no relief in my joints but I guess it takes a few weeks. I'm glad you are doing so well, Carol. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 In a message dated 3/6/2003 6:25:42 PM Eastern Standard Time, mika93@... writes: > In general, if you feel flushing, a spoonful of honey can work > wonders (it's cooling 'yin' to the heat 'yang'). I will try the honey. I have nothing to lose by doing this. Hope it works. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2003 Report Share Posted March 10, 2003 Hi , While Enbrel has done miracles for my PA, I still have a problem with the P. ( lower legs and scalp) My derms reaction is " it likely IS helping--- just think of how it might be without it " While I was taking both MTX and Enbrel, it was virtually gone, but the side effects from the MTX were worse by far than the P. <> enbrel question> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 In a message dated 3/10/2003 10:06:53 PM Eastern Standard Time, cacombe@... writes: > Enbrel hasn't helped my psoriasis either. The methotrexate is keeping > it in check at a level and that is manageble, the Enbrel I think actually > made it kind of flare a little. I'm surprised to hear about the flare. It was actually my derm who first suggested the Embrel to clear up the P and then I told him about all my joint pain. I took my 3rd injection yesterday and had a good day so I thought the Embrel was starting to work. Today my knees are quite painful again. Is is possible that the Embrel works on the day you inject it and wears off the next to or is it a coincidence? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 In a message dated 3/11/03 10:03:42 PM Eastern Standard Time, fam24@... writes: > I'm surprised to hear about the flare. It was actually my derm who first > suggested the Embrel to clear up the P and then I told him about all my > joint > pain. I took my 3rd injection yesterday and had a good day so I thought > the > Embrel was starting to work. Today my knees are quite painful again. Is > is > possible that the Embrel works on the day you inject it and wears off the > next to or is it a coincidence? > Janet > > > Janet, I also have had a flare with P after beginning the Enbrel. They are slowly subsiding mainly due to some UV treatment. I have also had some very bad swelling, especially in my hands and feet...seems to be fluid retention and not sausage digits. Has anyone else run across this? I am hoping this is just something that will pass and not tied in. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2003 Report Share Posted March 12, 2003 My husband has taken 8 doses of Enbrel and still has a lot of swelling in his feet and ankles. The doctor told him it was due to the methylprednisolone he is still taking, he is reducing the dosage right now, and hopefully that will help the swelling go down. One note on the Enbrel and P, my husband noticed just yesterday that he has no psoriases in his nails anymore and he had a lot...but he is still in a lot of pain. Rhonda I also have had a flare with P after beginning the Enbrel. They are slowly subsiding mainly due to some UV treatment. I have also had some very bad swelling, especially in my hands and feet...seems to be fluid retention and not sausage digits. Has anyone else run across this? I am hoping this is just something that will pass and not tied in. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2004 Report Share Posted July 23, 2004 Joy, it can take up to three or four months to really kick in. LeAnn Cayer & Furbrats Blossom & Meriko Heart Bandits American Eskimo Dog Rescue Oklahoma Referral Chapter Railroad Coordinator www.heartbandits.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2004 Report Share Posted July 23, 2004 Joy, I think it was close to two months before I could really say that I felt a difference. But then each week got better. Hang in there and give it time to work. If after a couple of months and you don't feel any different, then it's time to talk to your Rhumy again. Good luck and hang in there. Oh ya, I am on both Enbrel and MTX. Dick > Enbrel, I have had about 3 injections, 4th one tonight. > Nothing much has happpened I was wondering with people on the list how > long it takes to work. > Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 We had a power failure once and I had a similar question. Go to the Enbrel web site and look up their phone number. http://www.embrel.com/index.jsp And call their nurse. She will give you the guidelines on when it will go bad. There is more time out of the refrigerator then people think. But let them tell you so I don't get it wrong. Dick > > hi group, > > yesterday i picked my 1 month supply of enbrel from the hospital, i put them in the enbrel cooler bag, i went home, went inside and left the bag in the car, i remembered after 3 whole hours, they were still cool but i'm afraid to use them and the hospital won't give me more enbrel. What shall i do? can i use them or discard them? > > Ghaida,Kuwait > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Make sure you call Enbrel. I was told in a similar situation that it could stay at room temp for a few hours. Depending on how warm it got could determine whether it degraded or not. Enbrel will usually replace it in situations like this, but you have to go through them not your pharmacy. Don't tell them you left it in the car! Tell them you had a refrigeration failure. [ ] enbrel question hi group, yesterday i picked my 1 month supply of enbrel from the hospital, i put them in the enbrel cooler bag, i went home, went inside and left the bag in the car, i remembered after 3 whole hours, they were still cool but i'm afraid to use them and the hospital won't give me more enbrel. What shall i do? can i use them or discard them? Ghaida,Kuwait Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 --- Hi Larry, Sorry it has been so long I have wrote-I'm trying to get caught up with all the information and new people!! I think you are right we probably are lining our Pharmacists pockets with all the medications that we need. I go to a " Rite Aid " to get all my prescriptions-I don't know if they are all over the country, but we have quite a few in this midwestern area. We don't have many private pharm. anymore and I think that is why we don't get the friendly attitude anymore. Thanks for writing, Sue in Michigan. In , Lawrence Lichtenfeld <sportslinq@y...> wrote: > > Sue, > I don't know if you can- but I would change pharmacies. My pharmacy has two pharmacists, its at a supermarket and they treat me like an old friend. This is my second go-round on Enbrel, and I'm doing the double dosage. When I first went on it, my pharmacist told me it costs about $18,000/ year- that was 3 or 4 years ago. My copay is only a total of $300/year, so my insurance must cut Publix Pharmacy a nice big check. Plus the 5 other meds I take regularly and anything my family gets prescribed for this head cold or that sinus infection. As one of the pharamcists told me once, " Mr. Lichtenfeld, I just want to thank you for choosing Publix to handle this, and for paying for my daughter's braces. " With as much as you probably spend at the pharmacist, and assuming that all your prescriptions are coming from one doctor (like mine do), they should be treating you very well. > -Larry > > susieesue <susieesue@y...> wrote: > > > --- > Hi , > > I also got that letter about Enbrel pre-mixing-that would be great. > My Pharm. treated me awful when I called to get my Enbrel ordered. > Imagine that a Pharm. with an attitude like some of the Drs. that > have been mentioned. He evens gets an attitude with me about my pain > meds. He acts like the medication at his Pharmacy is his or > something. My Dr. office has had to call him several times to get > pain med. for me when they (Dr. office) called it in already and told > me it should be there waiting for me to pick it up. I want to ask > him if he would like to have PA and see how it is. That goes to show > you that it is hard for healthy pain free people to understand the > pain we are suffering from. > > God Bless, Sue in Michigan. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 Has anyone ever been on Enbrel and had their dosages upped, then REDUCED? I am concerned that the REDUCTION of my Enbrel by my dermo was a " no no " . The following symptoms seem to have either returned or worsened: 1. Nail pitting---it had virtually almost cleared up and now its back at about half of the origional pittance. 2. New Psoriasis lesions came in, then with my constant battling it with topicals (Dovonex etc), I at least have it in control. 3. Skin sensitivity has INCREASED. Some days can barely stand to have something touch it. 4. Skin is PEELING????? Its as if my whole body is trying to " flake " . I did get a little bit of sun about a week and half ago, but it was not enough to give me a burn that would cause a peel. 5. Pain. Pain of course has increased again. Especially in my back. And the muscle pain seems to be more pronounced. Find myself taking more of the pain meds (a narc & a muscle relaxant). 6. I ITCH????? Yep folks, ITCHING. The Psoriasis lesions I have are just lesions, and there is pretty much no plaques. So now you guys see why I am taking both RX's with me on Friday to see my dermo--show her PROOF what I had formerly and tell her all these issues and get my Enbrel back up and end my poor misery. Does all this sound like a flare brought on by the reduction of the Enbrel? It was origionally (wayyy back when started in Feb 2004) 2 25 ml weekly. Then about July or August, we upped it to 4 25 ml weekly (two injects one in each leg, twice a week). Then the prefilleds came out. Jan to March I was on 2 50 ml injects weekly and did fairly good considering that it was cold bitter and harsh winter months. Now its down to 1 50 ml weekly. I don't think my poor body can handle all the flipfloppin of the doses! LOL. Enbrel is one of the best medications we could hope for, and it has really helped me when at the right dosage. But, sadly, biologics are not for everyone (((( hugs to Fran))))). Any feedback welcomed before I go to the doctor on friday so I have more " ammo " . And yes, I see the rheumy in May. Zoella, nice to meet you! Will write soon--I am in Oklahoma City and go to OU Dermatology. LeAnn in OK P since 1985, PA since 1999 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2008 Report Share Posted April 20, 2008 , although exercise is important it can be couterproductive if you don't have your PA under good control yet and you are doing impact-type exercise like walking/running/jogging. It would be much better if you could do aquatic exercise. If your joints think they are being hurt, your immune system kicks in and that's what does the damage. Either switch to aquatic or back off somewhat on your current program to the level where it's not causing flares. I find that I can walk more without causing a problem if I break it up into smaller pieces - for example, walk 15 minutes, sit 15 minutes, walk 15 minutes, sit 15 minutes. This doesn't really give much aerobic benefit, but it keeps the joints flexible and is good weight-bearing exercise without as much stress on the joints. You can get aerobic workout by swimming or stationary bike (if your knees are not a big problem) or something else that doesn't stress your problem joints. Aquatic is by far the best of us. regards, sherry z Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.