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Medical Forum / Diseases and Disorders / Arthritis / March 2005Back from visit to Rd
Well I wanted my leg and foot to "blow up" as it does, so the RD could see what it looks like. I was in luck- both did. An right now I am in excruciating pain. I have run out of T3, and only hope that the pharm is open tomorrow. I do have demerol and morphine at home, but I hate taking t hem./ I did not take any pred or anything else (ran out of T3) so that he could see it at its worst- and this truly is as never have both legs been involved at the get go before. He wanted to do a biopsy but thought the recovery would be problematic, and it is my spring break. The bottom like is that he thinks that this is a severe refractory lupus-like reaction to remicade, so as of now I am off remicade officially. But this is still a best guess. It makes sense though, and it does make sense. I tend to develop this reaction somewhere at the three week mark of the six week cycle, and the reaction is getting progressively worse. In BC you have to have tried/failed arava before you can go on enbrel, and humira is not on the provincial formulary yet. So I will be on arava and mtx until July or until I can not tolerate it. So that is that. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. ((((Rose)))) I am so sorry that you are in such pain! I hope the Arava and MTX combo works well for you, or that if it doesn't, you are able to get something that does. Kelly C. > Well I wanted my leg and foot to > "blow up" as it does, so the RD could see what it looks like. I was [quoted text clipped - 28 lines] > > Please remove "Ima" to reply. {{{{{{{{{{{{{{{Rose}}}}}}}}}}}}}}}} So sorry about the pain, but glad the doc could see the problem for real. Pray it will soon be much better for you. Gwen > Well I wanted my leg and foot to > "blow up" as it does, so the RD could see what it looks like. I was [quoted text clipped - 28 lines] > > Please remove "Ima" to reply. It's always my dream to be flaring when the RD sees me. So far he has only my say so to go on. {{{{{{{Rose}}}}}}} DeeTee ________________________________ DeeTee and Bob Taggart http://www.marykay.com/dtaggart3 http://mysite.verizon.net/vze8fwov/ ________________________________ > Well I wanted my leg and foot to > "blow up" as it does, so the RD could see what it looks like. I was [quoted text clipped - 29 lines] > > Please remove "Ima" to reply. Thanks to all three of you who replied. I got up early today to take the pred (did not want to start late last night) so I do notice some improvement. I did give in and take the morphine last night. It did help some as there was a substantial difference when it wore off. It is a systemic problem as well, and usually I feel ill two or three days before the leg swelling/redness appears.It ends up being about two weeks out of every six that i am ill with it. Last time I was not sure what happened as right after my infusion my hand "blew up" and was unusable for several days. Pred will soon have me "right as rain". Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. Rose ask him for a script for Bentyl [bet that is not what it is called in Canada] as it has been my miracle in taking Arava. And it is a cheap drug at that. It was used for people with digestive disease like Crohn's. It stopped my explosive problem. :) Sorry about the Remicade but glad you have an idea of where the leg thing is coming from. Duckie > Well I wanted my leg and foot to > "blow up" as it does, so the RD could see what it looks like. I was [quoted text clipped - 28 lines] > > Please remove "Ima" to reply.  Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) Damn Rose - this is not what you wanted to happen yet. Having said that though Arava did work a bit for me and the RD figured the combination would work if I could have taken mtx. With luck though you will fail arava quickly and get on enbrel. With further luck though this will solve the evil foot thing. What a way to spend spring break - so unfair! Kelly > Well I wanted my leg and foot to > "blow up" as it does, so the RD could see what it looks like. I was [quoted text clipped - 29 lines] > > Please remove "Ima" to reply. Thanks Kelly. I am hopeful that this is the end of the evil fot problem as well. If this is a reaction to mouse proteins though, then enbrel is out as well. But that remains to be seen. I think I am more afraid of arava than i am of other things. Diarrhea and teaching do not go well together. But I guess whether i develop that problem or not remains to be seen as well. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. Wow, Rose, I am glad your RD finally got to see the evil foot/leg thing, but sorry to hear he thinks it is a reaction to your remdicade! Sure hope the Arava will be of some help for you, and really praying that now that you are off the remicade, that this will be the end of the evil foot/leg thing!!! Will send prayers that you can find the next "right mix" of dmards for you!!! Hang in there and best of luck! Donna G >Wow, Rose, I am glad your RD finally got to see the evil foot/leg thing,... >Hang in there and best of luck! > >Donna G Me too Donna. I hope this is really it. The next few weeks will tell the story. Thanks for your concern. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. > I think I am more afraid of arava than i am of other things. Diarrhea > and teaching do not go well together. But I guess whether i develop > that problem or not remains to be seen as well. I'm sorry you're having to go through this, Rose!! And of all times of the year....spring is so hectic in schools. My RD had mentioned Arava to me last year and I didn't want to try it unless it was summertime and I was out of school because of the diarrhea. My mom was on it and had the diarrhea. I figured I'd probably have the same side effect, if she did. I'd suggest finding a buddy teacher whose classroom is near yours, in case you do have that side effect. Then you will have someone to watch your class if you need to leave in a hurry. Also, just in case, take a change of clothing with you.....you just never know. I'm thinking of you, Rose!! I hope you do well on the Arava and mtx!! Carol Thanks for the advice, Carol. It makes a lot of sense. Unfortunately I am a long ways away from the powder room, so it could be a problem. Thinking about the side effects is really scary for me. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. aw, Rose, all I can say is that I hope it all works out for you. Arava did cause me to change my diet some to avoid the diarrhea and I'm still not sure I could have committed to being in a classroom while on it. But apparently that med Duckie mentioned works really well to prevent that side effect. got everything crossed for you. SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare It is a miracle. Duckie > aw, Rose, all I can say is that I hope it all works out for you. > [quoted text clipped - 4 lines] > > got everything crossed for you. Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) http://ibscrohns.about.com/od/bentyl/ My script is for 2 a day and I was to start with one 10mg for a week and if needed go to two if needed. I was taking two until I started South Beach. I think the lack of sugar somehow helped. Oh, and I now take the drug with dinner instead of breakfast. Gives my body 12 hours to react with a close by toilet. You might take yours at the end of the school day unless you stay late... That two was a change. Used to take it first thing in the morning and then around noon while out of the house, I would have to find the nearest bathroom. Also got so I chose what I ate today based on where I needed to be the next day. Bentyl fixed it so I can eat what I want now. I highly recommend it. I think it was DianeW who suggested it to me. Duckie that med Duckie mentioned works really well to prevent that side > effect. Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) > Oh, and I now take the drug with dinner instead of > breakfast. Gives my body 12 hours to react with a close > by toilet. Oh yeah, I did that, too. Actually, I took it after dinner. I seemed to have less gas if I took it after eating rather than before and generally the rest hit me during my morning routine. SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare Yes mine if after dinner -- just after. Duckie >>Oh, and I now take the drug with dinner instead of >>breakfast. Gives my body 12 hours to react with a close [quoted text clipped - 3 lines] > have less gas if I took it after eating rather than before and generally the > rest hit me during my morning routine. Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) >Yes mine if after dinner -- just after. >Duckie How long after taking it does the diarrea start? This whole aspect is scary for me. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. For me a couple of hours which is why taking it at dinner time when you will be in the house for hours... is a really good thing. If you had constipation problems, this drug is your answer. If you don't you are going to need Bentyl. Actually the RD that prescribed it, told me to pick up immodium to take with it daily. But immodium would stop the diarrhea and then constipation followed by explosive not so much fun. The bentyl stops the diarrhea from happening -- just evens things out just like normal. I can't praise it enough. Personally wouldn't take Arava without it. I think if you tell the doctor's what you do and where the bathroom is in relation to your classroom, ask for the Bentyl script with the Arava, they will give it to you. Duckie >>Yes mine if after dinner -- just after. >>Duckie [quoted text clipped - 5 lines] > > Please remove "Ima" to reply. Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) >For me a couple of hours which is why taking it at >dinner time when you will be in the house for hours... [quoted text clipped - 11 lines] >Bentyl script with the Arava, they will give it to you. >Duckie I am going to email my RD and ask him if he uses it, that i have heard it works well, and that I have specific concerns. Might do the trick. Is this a costly drug. Our problem here is that some are approved/ some not and so on so I have to find out if it is even on the provincial formulary. Thanks. I sent you a pic of Quigley. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. It is a very VERY old drug. I pay $5 for 60 pills. Some of the new drugs with my insurance, I pay $40 for 30 pills. So thinking they will be thrilled to give this one to you. Nothing like a cheap pill. Duckie > I am going to email my RD and ask him if he uses it, that i have heard > it works well, and that I have specific concerns. [quoted text clipped - 8 lines] > > Please remove "Ima" to reply. Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) |
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