Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 Hi Dennis, The same thing happened to me on Humira, in fact I got so much worse that I had to be hospitalised. Within the first month I started to feel ill but was told by my rheumy to continue, I continued for another month but by that time I'd had enough and refused to take any more. After I got home, I was asked to continue with the Humira as " it may only be a blip " . Then when I refused, they wanted me to commence Enbrel immediately, but I dug my heels in and told them I needed to give my body a rest from all these drugs as I was also taking 2 DMARDS and an NSAID amongst others. I left it nearly 18 months before starting Enbrel in March this year. I got a really good result with Enbrel very quickly, but just as quickly the effect has stopped. Go by your instinct Dennis, as you are the expert on your disease. I am considering an unlicensed drug just now, as I seem to be constantly in a flare, but I won't be rushing into anything. Good luck with whatever you decide. You have much to cope with as it is. Love and hugs ________________________________ From: Dennis W <betnden@...> < > Sent: Thursday, 20 August, 2009 15:56:48 Subject: [ ] I quit Humira I've had enough of this drug. Last week I had a major flare that was pretty painful, but sensed it coming for a good month or more. I took my first injection in June even though I was down to 2 1/2 mg of Pred but was ordered to increase it back to the 10 mg I started from! I don't know how the Rheumy will take it, but I'm going back down on Pred and refuse more Humira. Has anyone had this problem of regressing to pre-MTX days in just a month or 2? -- Dennis in eastexas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 Hugs Dennis and . What a struggle for both of you with the biologics. I wonder in the next 10 years if they'll figure out that RA is actually several different diseases and somehow have a way to predict which patient responds to what drug. Kate F ________________________________ From: Ledsom <sarahledsom@...> Sent: Thursday, August 20, 2009 12:05:30 PM Subject: Re: [ ] I quit Humira Hi Dennis, The same thing happened to me on Humira, in fact I got so much worse that I had to be hospitalised. Within the first month I started to feel ill but was told by my rheumy to continue, I continued for another month but by that time I'd had enough and refused to take any more. After I got home, I was asked to continue with the Humira as " it may only be a blip " . Then when I refused, they wanted me to commence Enbrel immediately, but I dug my heels in and told them I needed to give my body a rest from all these drugs as I was also taking 2 DMARDS and an NSAID amongst others. I left it nearly 18 months before starting Enbrel in March this year. I got a really good result with Enbrel very quickly, but just as quickly the effect has stopped. Go by your instinct Dennis, as you are the expert on your disease. I am considering an unlicensed drug just now, as I seem to be constantly in a flare, but I won't be rushing into anything. Good luck with whatever you decide. You have much to cope with as it is. Love and hugs ____________ _________ _________ __ From: Dennis W <betndengmail (DOT) com> < @gro ups.com> Sent: Thursday, 20 August, 2009 15:56:48 Subject: [ ] I quit Humira I've had enough of this drug. Last week I had a major flare that was pretty painful, but sensed it coming for a good month or more. I took my first injection in June even though I was down to 2 1/2 mg of Pred but was ordered to increase it back to the 10 mg I started from! I don't know how the Rheumy will take it, but I'm going back down on Pred and refuse more Humira. Has anyone had this problem of regressing to pre-MTX days in just a month or 2? -- Dennis in eastexas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 Spot on Kate, as that may be the reason why we are all so different, unlike other diseases. How simple would it be for us and all these rheumy's who haven't a clue what to do next. love and hugs ________________________________ From: Fair <kalfoley@...> Sent: Thursday, 20 August, 2009 18:21:07 Subject: Re: [ ] I quit Humira Hugs Dennis and . What a struggle for both of you with the biologics. I wonder in the next 10 years if they'll figure out that RA is actually several different diseases and somehow have a way to predict which patient responds to what drug. Kate F ____________ _________ _________ __ From: Ledsom <sarahledsom@ .co. uk> @gro ups.com Sent: Thursday, August 20, 2009 12:05:30 PM Subject: Re: [ ] I quit Humira Hi Dennis, The same thing happened to me on Humira, in fact I got so much worse that I had to be hospitalised. Within the first month I started to feel ill but was told by my rheumy to continue, I continued for another month but by that time I'd had enough and refused to take any more. After I got home, I was asked to continue with the Humira as " it may only be a blip " . Then when I refused, they wanted me to commence Enbrel immediately, but I dug my heels in and told them I needed to give my body a rest from all these drugs as I was also taking 2 DMARDS and an NSAID amongst others. I left it nearly 18 months before starting Enbrel in March this year. I got a really good result with Enbrel very quickly, but just as quickly the effect has stopped. Go by your instinct Dennis, as you are the expert on your disease. I am considering an unlicensed drug just now, as I seem to be constantly in a flare, but I won't be rushing into anything. Good luck with whatever you decide. You have much to cope with as it is. Love and hugs ____________ _________ _________ __ From: Dennis W <betndengmail (DOT) com> < @ gro ups.com> Sent: Thursday, 20 August, 2009 15:56:48 Subject: [ ] I quit Humira I've had enough of this drug. Last week I had a major flare that was pretty painful, but sensed it coming for a good month or more. I took my first injection in June even though I was down to 2 1/2 mg of Pred but was ordered to increase it back to the 10 mg I started from! I don't know how the Rheumy will take it, but I'm going back down on Pred and refuse more Humira. Has anyone had this problem of regressing to pre-MTX days in just a month or 2? -- Dennis in eastexas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 Dennis, I'm so sorry that the Humira is not working for you. Maybe you should give Enbrel a shot. Sue On Aug 20, 2009, at 10:56 AM, Dennis W wrote: > I've had enough of this drug. Last week I had a major flare that was > pretty > painful, but sensed it coming for a good month or more. I took my > first > injection in June even though I was down to 2 1/2 mg of Pred but was > ordered > to increase it back to the 10 mg I started from! I don't know how > the Rheumy > will take it, but I'm going back down on Pred and refuse more > Humira. Has > anyone had this problem of regressing to pre-MTX days in just a > month or 2? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 I don't know what is in store for me. The cancer is an unknown and has me bothered a little. My rheumy did say he wants to know all about my treatment and to work closely with the oncologist. That may be a good thing. I also have to quit MTX until further notice. Maybe the radiation treatment will help me get off Prednisone as a side effect. Dennis in eastexas On Thu, Aug 20, 2009 at 2:02 PM, marysue <marysue@...> wrote: > > > Dennis, I'm so sorry that the Humira is not working for you. Maybe you > should give Enbrel a shot. > > Sue > > > On Aug 20, 2009, at 10:56 AM, Dennis W wrote: > > > I've had enough of this drug. Last week I had a major flare that was > > pretty > > painful, but sensed it coming for a good month or more. I took my > > first > > injection in June even though I was down to 2 1/2 mg of Pred but was > > ordered > > to increase it back to the 10 mg I started from! I don't know how > > the Rheumy > > will take it, but I'm going back down on Pred and refuse more > > Humira. Has > > anyone had this problem of regressing to pre-MTX days in just a > > month or 2? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 Dennis, When I had to have radiation following surgery for breast cancer, the radiation oncologist at first said that I shouldn't take MTX during the seven weeks of radiation treatment. My rheumy could not put me on something like Enbrel, because I had not failed on two drugs, a requirement of my insurance company. So the radiation oncologist let me stay on the MTX for the duration. I have often wondered if the radiation had something to do with the decline in my white blood cells. I wish you the best as you have to deal with cancer on top of everything else. Sue On Aug 20, 2009, at 5:11 PM, Dennis W wrote: > I don't know what is in store for me. The cancer is an unknown and > has me > bothered a little. My rheumy did say he wants to know all about my > treatment > and to work closely with the oncologist. That may be a good thing. I > also > have to quit MTX until further notice. Maybe the radiation treatment > will > help me get off Prednisone as a side effect. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 Hi Dennis: I was sorry that the Humira did not work for you and that you had to go back to your original dose of Pred. Hopefully this dose of Pred. helps your bad flare. Your body needs to recover for all it has been through. I am sure you will be successful eventually getting off the Pred. totally. I too had to stop decreasing my Pred. I got to 5 mg. daily, but my feet and ankles and hands began to swell and hurt. So, I went up to 7 1/2 mg. daily, and so far so good. I will try again after I get home from Mass. I too have never been able to get off it. I hope you feel o.k. when you stop your MTX. After awhile, I hope you will try another drug to see if you can get some much needed relief from all your pain and suffering. It stinks that Humira did not help you. All we can do is keep trying to find the right one for us. In my prayers and thoughts. Take care Dennis, and I so want you to feel much better soon. Hang in there. I know you have a very full plate right now. Hugs, Barbara > > I don't know what is in store for me. The cancer is an unknown and has me > bothered a little. My rheumy did say he wants to know all about my treatment > and to work closely with the oncologist. That may be a good thing. I also > have to quit MTX until further notice. Maybe the radiation treatment will > help me get off Prednisone as a side effect. > > Dennis in eastexas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 Dennis, I started humira in 04, and was on it about a year. I feltit wasn't working for me. I talked with my rheumy, and so I tried it weekly, it did work for about 4months. My doctor put me on enbrel, and I was on it for about a year, and then I felt it wasn't working anymore. I started back on humira in 07, and I feel its working for me. I can take care of myself, and do most things. I do have flares, but I think its just a part of RA. You need to talk with your rheumy, and find out the next step. There is always a step to take forward to get you feeling better. I know its not easy, but it helps in the end, when you feel better. Have you thought about trying another biologic med? One of them possibly would work for you. Do you have fibro? It can be very painful too. I pray that flare leaves, and you can get some relief, Tawny > > I've had enough of this drug. Last week I had a major flare that was pretty > painful, but sensed it coming for a good month or more. I took my first > injection in June even though I was down to 2 1/2 mg of Pred but was ordered > to increase it back to the 10 mg I started from! I don't know how the Rheumy > will take it, but I'm going back down on Pred and refuse more Humira. Has > anyone had this problem of regressing to pre-MTX days in just a month or 2? > > -- > Dennis in eastexas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2009 Report Share Posted August 21, 2009 Hi Dennis - I'm sorry to hear that the Humira didn't work for you. I was taking Enbrel for 7 weeks and ended up feeling worse with each injection compared to before I started it. After the 7th injection, I ended up with a double ear infection and a sinus infection. I have not started back with it, but have gone to Minocycline 100mg twice daily instead - that is the antibiotic protocol that this site speaks of: http://arthritis.about.com/cs/antibiotic/a/antibiotictreat.htm The Road Back Foundations also speaks of the antibiotic protocol (AP): http://www.roadback.org/index.cfm/fuseaction/home.main.html My Rheumy was reluctant to start me on the AP, but we came to a compromise - if it doesn't work, I'll give the Enbrel a second try. I feel some relief since being on the AP - I'm afraid to try the Enbrel again, so I wonder how much is really helping with the AP or how much of it is wishful thinking? Best of luck to you.....Doreen > > I've had enough of this drug. Last week I had a major flare that > was pretty painful, but sensed it coming for a good month or more. > I took my first injection in June even though I was down to 2 1/2 > mg of Pred but was ordered to increase it back to the 10 mg I > started from! I don't know how the Rheumy will take it, but I'm > going back down on Pred and refuse more Humira. Has anyone had this > problem of regressing to pre-MTX days in just a month or 2? > > -- > Dennis in eastexas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2009 Report Share Posted August 21, 2009 Yes, Ma'am, there is a 'next step' but we can't guess at that until I get the cancer treatment over with. And yeah, I do have Fibro, along with Sjogrens, DDD, vasculitis, high BP, and of course, depression from all that. I guess there's more that I'm dealing with but don't remember off hand. (What do you call dealing with rotten children?) Life goes on whether I'm ready or not. The flare is still here for now. The only treatment I know right now is a trip to the China Buffet for punishment. Dennis in eastexas On Fri, Aug 21, 2009 at 12:01 AM, tdianaok <tdianaok@...> wrote: > > > > Dennis, > > I started humira in 04, and was on it about a year. I feltit wasn't > working for me. I talked with my rheumy, and so I tried it weekly, it > did work for about 4months. > > My doctor put me on enbrel, and I was on it for about a year, and then I > felt it wasn't working anymore. I started back on humira in 07, and I > feel its working for me. I can take care of myself, and do most things. > I do have flares, but I think its just a part of RA. > > You need to talk with your rheumy, and find out the next step. There is > always a step to take forward to get you feeling better. I know its not > easy, but it helps in the end, when you feel better. > > Have you thought about trying another biologic med? One of them > possibly would work for you. Do you have fibro? It can be very painful > too. > > I pray that flare leaves, and you can get some relief, > > Tawny > > > > > > I've had enough of this drug. Last week I had a major flare that was > pretty > > painful, but sensed it coming for a good month or more. I took my > first > > injection in June even though I was down to 2 1/2 mg of Pred but was > ordered > > to increase it back to the 10 mg I started from! I don't know how the > Rheumy > > will take it, but I'm going back down on Pred and refuse more Humira. > Has > > anyone had this problem of regressing to pre-MTX days in just a month > or 2? > > > > -- > > Dennis in eastexas > > > Quote Link to comment Share on other sites More sharing options...
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