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Medical Forum / Diseases and Disorders / Arthritis / July 2004Strange question...
If you had FMS and you were treating it with enbrel is there a large possibility that it would help the FMS? melissa <who is getting ready to do battle with my crappy RD> >If you had FMS and you were treating it with enbrel is there a large >possibility that it would help the FMS? Enbrel is not used to treat FMS, it is used to treat RA. No research I know of shows that Enbrel treats FMS. There may be a side benefit to treating RA with Enbrel in that you might be sleeping better so that might ease the FMS. Visit my website: http://www.mzuschlag.com that's what I thought...and it's an arguement I will use heavily with my RD if I don't have inflammatory arthritis then why is the enbrel helping ease my pain? Thanks for the answer! melissa >>If you had FMS and you were treating it with enbrel is there a large >>possibility that it would help the FMS? [quoted text clipped - 6 lines] >Visit my website: >http://www.mzuschlag.com >that's what I thought...and it's an arguement I will use heavily with my >RD if I don't have inflammatory arthritis then why is the enbrel helping >ease my pain? Sounds like you might need to switch RDs instead of going off Enbrel it that is what he is implying. -- MZ Visit my website: http://www.mzuschlag.com Melissa, Is your doc deciding to switch your diagnosis? Did he make the original diagnosis? Lots of issues here but changing a diagnosis after starting a dmard is not sop. If you are seronegative then most of the criteria used for diagnosis is supposed to change when a DMARD is effective. I have errosive joint damage right now and that is about all that would lead to an RA diagnosis (have more criteria for a PA diagnosis). sed rate and CRP are almost normal now. Joint swelling is 90% improved. I think if a doc saw me for the first time and was diagnosing me, it would probably be OA rather than active RA. However, wait a month with no biologic and that would change. A month off humira saw my sed rate back up, my CRP back up, my hands swollen, and stiffness taking a long time to resolve in the morning (in fact probably never). Give us more info m > I have errosive > joint damage right now and that is about all that would lead to an RA > diagnosis > (have more criteria for a PA diagnosis). I'm curious about this distinction. I thought both PA and RA can cause erosive joint damage, though RA might do it sooner. Am I wrong/misinformed? I know my current bozo RD insists that you must show joint erosions in order to start Enbrel. I know that's wrong, but I'll be dumping him very soon anyway. (cross your finger - it's looking very good on the job/move/health insurance front! I'm scared to actually say more out loud, but it is looking good......)  SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare >that's what I thought...and it's an arguement I will use heavily with my >RD if I don't have inflammatory arthritis then why is the enbrel helping [quoted text clipped - 11 lines] >>to treating RA with Enbrel in that you might be sleeping better so >>that might ease the FMS. Why is the President pushing for money for the MOON and Mars, when there is so much about health we dont know here on Earth. Kerry 2004! http://www.democrats.org/ http://www.cbsnews.com/stories/2004/03/12/60minutes/main605700.shtml http://www.msnbc.com/news/992470.asp?0si=-&cp1=1 http://www.msnbc.msn.com/id/4078585/ > Why is the President pushing for money for the MOON and Mars, when there is so > much about health we dont know here on Earth. Please do not reply to this ignorant bitch that happens to be a troll that is not going to change or listen to whatever you have to say. Harv >Why is the President pushing for money for the MOON and Mars, when there is >so >much about health we dont know here on Earth. In my humble opinion--because that is where the future of the human race lies, out among the stars. Char "Remember, I'm pulling for ya'. We're all in this together." Red Green FMS is helped with exercise. If the Enbrel is giving you more energey and less pain from whatever form of arthritis you have, FMS will be lessened because you are moving around more. I've been so layed up with my back since April. I am now starting to notice more and more pain that is not related to my back fractures. Joints are swollen and sore. FMS is at the door but I'm getting better sleep so it's not too loud yet. I think your dr needs to consider you as maybe sero-negative something! SignatureCyberhugs, DianeW It is only with the heart that one can see rightly; what is essential is invisible to the eye. --Antoine de Saint Exup?ry > If you had FMS and you were treating it with enbrel is there a large > possibility that it would help the FMS? > > melissa <who is getting ready to do battle with my crappy RD> I don't know Melissa-Just pored through all the research data I could find and there is nothing even looking at biologics for FMS. That said, my RD had thought for a while I might have a FMS component to my arthritis. Lots of paid that was clearly not conective tissue and not joint and didn't necessarily follow the RA map. In other words, I could feel great joint wise and still have these pains. When I stgarted humira that went away and has stayed away. As we have talked about it, she has mentioned that she has had a number of patients on the biologics, who also had FMS, that found an extreme lessening of their syptoms (including brain fog which I haven't ever had). She thinks someone at least needs to raise the question about the biologics and FMS. Also remember a chrons patient of mine who started remicade and had her FMS sibside completely. Hum... m Guess maybe I should have given a little more backround into what's going on. I have a new RD who is trying to convince me I don't have inflammatory arthritis 'just' fibromyalgia...and she wants to treat it with mtx. She also mentioned that she would like to take me off all meds for 6 months to see for herself what's going on. Asked me about my time on plaq and sulfasalazine (had reactions to both...couldn't breathe) and then told me so you don't really know if they work or not...guess I should see if they kill me next time. Her thought is if I'm in a med remission then I don't really need enbrel and could take less mtx. Isn't that reassuring? I've been having a really difficult time this year and I really don't have the energy to fight this twit. But I'll tell ya what if she takes me off all meds for 6 months I might as well just put a bullet in my head. melissa >I don't know Melissa-Just pored through all the research data I could find and >there is nothing even looking at biologics for FMS. That said, my RD had [quoted text clipped - 12 lines] > >m > Guess maybe I should have given a little more backround into what's going on. > I have a new RD who is trying to convince me I don't have inflammatory [quoted text clipped - 8 lines] > Her thought is if I'm in a med remission then I don't really need enbrel and > could take less mtx. HUH?! Medicated remission usually means that remission only exists *because* you're medicated. Enbrel did allow me to stop using MTX, but going off everything just to see what happens doesn't make much sense to me. >Isn't that reassuring? No. > I've been having a really difficult time this year and I really don't have the > energy to fight this twit. But I'll tell ya what if she takes me off all meds > for 6 months I might as well just put a bullet in my head. Let's not be rash here...do you have the choice of seeing someone else? > melissa Kelly C. >> Her thought is if I'm in a med remission then I don't really need enbrel >> and could take less mtx. > HUH?! Medicated remission usually means that remission only exists *because* > you're medicated. Enbrel did allow me to stop using MTX, but going off > everything just to see what happens doesn't make much sense to me. I believe that's what Harv and I have been preaching for a few years. ... I'm having daydreams about night things in the middle of the afternoon. In my very humble and worthless opinion, your new RD is an arrogant twit who does not believe any opinion but her own. All her patients should be virgin RA patients right? No other inferior physician should have interfered with them in the past. And preferably quite well along toward deformity so that she can bestow her singularly beneficial treatment on them? Sorry, I'm in a particularly bitchy mood today, and I have no idea why. Jo > Guess maybe I should have given a little more backround into what's going on. > I have a new RD who is trying to convince me I don't have inflammatory [quoted text clipped - 34 lines] > > > >m > In my very humble and worthless opinion, your new RD is an arrogant twit who > does not believe any opinion but her own. All her patients should be virgin [quoted text clipped - 5 lines] > > Jo Sarcasm...just one of the many services we offer.LOL Kelly C.;o) rofl Duckie >>In my very humble and worthless opinion, your new RD is an arrogant twit > [quoted text clipped - 21 lines] > > Kelly C.;o) Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) Jo Firey wrote: > In my very humble and worthless opinion, your new RD is an > arrogant twit who does not believe any opinion but her own. > All her patients should be virgin I read this a second time and saw "her parents should be virgins". ... "Pregnant" is the past tense of virgin. Jo Firey wrote to Melissa: > In my very humble and worthless opinion, your new RD is an arrogant twit who > does not believe any opinion but her own. All her patients should be virgin > RA patients right? No other inferior physician should have interfered with > them in the past. And preferably quite well along toward deformity so that > she can bestow her singularly beneficial treatment on them? I think your opinion is far from worthless. It is priceless - and accurate. > Sorry, I'm in a particularly bitchy mood today, and I have no idea why. What's the weather like up there? > In my very humble and worthless opinion, your new RD is an arrogant twit who > does not believe any opinion but her own. All her patients should be virgin [quoted text clipped - 5 lines] > > Jo I do not think what you have said has anything to do with being bitchy,,,,, and its OKkkkk to be bitchy in this newsgroup. Been there,,,done that. In other words,,, well said. harv Ps Doctors that need to see damage by x ray to prove their ignorance,,, need to be replaced. One thing for sure,,, they do not feel your pain. They have distanced themselves from the fact that you will CARRY those changes for the rest of your life.... Medicated remission is what we all strive for and it means that we must continue the medicine to keep it that way. I have gone into medicated remission on three different medicines and for one reason or another have stopped them for a period of time and slipped back into what we call a flare. IMO, the most damage to our bodies is done during a flare. Methx, Arava, and Enbrel..... Harv What an idiot--run--do not walk- run--even if it hurts--to another doc--what is this--show and tell by gimps for docs who haven't seen what a flare looks like???--like--I want to see how much you suffer if I take you off your meds? ?? Are you sure she has an MD and not an S&MD?????? I knew for sure what a miracle my Enbrel is when I had to go off for a time due to a serious infection we could not clear up---can you spell F*L*A*R*E???? and my baseline after that even in medicated remission was just the slightest tad less than before--sigh---I just can't fathom the rationale for such nonsense. Alix Me either and the fact that she can make the choice for me scares the hell out of me. melissa >What an idiot--run--do not walk- run--even if it hurts--to another >doc--what is this--show and tell by gimps for docs who haven't seen what a [quoted text clipped - 7 lines] > >Alix She can't be the only RD in the Chicago area??? I would NOT go back to her except to pick up my files and then only if necessary. You do NOT have to be nice to her. She does not deserve it. Call your PCP on Monday for another referral to someone else. Explain this nut to your PCP. Then run to the new doctor. Duckie > Me either and the fact that she can make the choice for me scares the hell > out of me. [quoted text clipped - 12 lines] >> >>Alix Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) I'm going one more time to see what crazy advice she gives me then I'm hot footing it to my PCP....I'm just hoping she will listen... melissa >She can't be the only RD in the Chicago area??? I would NOT go back to >her except to pick up my files and then only if necessary. You do NOT [quoted text clipped - 19 lines] >>> >>>Alix > What an idiot--run--do not walk- run--even if it hurts--to another > doc--what is this--show and tell by gimps for docs who haven't seen what a [quoted text clipped - 7 lines] > > Alix Now see, I knew someone could say it more nicely than I did. Right on. Jo Not bitchy just right on. This is exactly how I would explain her. I hated her the minute that I met her. She just refused to listen to me no matter what I said...so I repaid her in kind melissa <who hopes your having a better day today> >In my very humble and worthless opinion, your new RD is an arrogant twit who >does not believe any opinion but her own. All her patients should be virgin [quoted text clipped - 62 lines] >> > >> >m Melissa honey-RUN, do not walk, away from this "twit" as fast as your little legs will carry you. >Her thought is if I'm in a med remission then I don't really need enbrel and >could take less mtx. Isn't that reassuring? If you are in a medicated remission, if she takes away the medication, you will no longer be in remission. DUH!!!! Where did she get her degree? Out of a Cracker Jack box? She is big time scarey!! Char "Remember, I'm pulling for ya'. We're all in this together." Red Green Like minds -- Duckie > Melissa honey-RUN, do not walk, away from this "twit" as fast as your little > legs will carry you. [quoted text clipped - 12 lines] > > "Remember, I'm pulling for ya'. We're all in this together." Red Green Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) Ya know the scariest thing about all of this is she has the control to really mess up my life. I remember what my life was like before enbrel and believe me there is no way I could take care of a 2 year old if I went back to no dmard. I told her I didn't like the kind of side effects mtx has and that I know many people who have a problem with it. Her response was are you going to trust some people or your doctor? I was nice enough not to say it but I sure was thinking hey, I've know 'those' people for a heck of a lot longer than I've known you. Funny, one of those people who had bad side effects from mtx was my dad and I sure will trust him first. I'm hoping if this twit has me come off the enbrel that I can go to my PCP and get a second opinion from another RD but I'm not 100% sure. Kelly, your post is what scares the heck out of me. I really don't want that to happen to me...and I'm really sorry it happened to you. Here's the thing that really kills me. Wouldn't every single one of us if told we didn't really have arthritis and didn't have the pain to go along, be damn glad to not have it. I'd throw a party and invite everyone I knew it would be news worth celebrating. Now if I can just convince my body to stop hurting. melissa >Guess maybe I should have given a little more backround into what's going on. >I have a new RD who is trying to convince me I don't have inflammatory [quoted text clipped - 34 lines] >> >>m Melissa after the doctor told me I didn't have RA and I just had to get out and be really active (you know - like I was before I got RA which wasn't RA!) I was so screwed up. I was thrilled that I didn't have it, figured maybe I had something else and it had gone away but at the same time wondered if the whole thing was in my head.Tried so hard to get well, and low and behold 4 months was so bad. Really tried as you said to convince my body it really wasn't RA but.... sometimes the body can't be convinced. SignatureKelly from North Saanich, B.C. > I told her I didn't like the kind of side effects mtx has and that I know > many [quoted text clipped - 3 lines] > known you. Funny, one of those people who had bad side effects from mtx was > my dad and I sure will trust him first. not sure if you're nicer than me or just younger and not yet as fed up, but I would have said those things. Would've said them fairly nicely, such as pointing out my father was one of those people and I might have inherited that gene as well as these other ones..... and would have pointed out that I (you) already know what it does to my body! Heck, if she fires you as a patient, get another doctor. She is there to care for you, you aren't there to be her victim. SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare >I've been having a really difficult time this year and I really don't have the >energy to fight this twit. But I'll tell ya what if she takes me off all meds >for 6 months I might as well just put a bullet in my head. Nah, don't do that. Aim it in her direction! :-) --- Joan Where did she get her medical degree -- a box of cracker jacks?? Duckie > Guess maybe I should have given a little more backround into what's going on. > I have a new RD who is trying to convince me I don't have inflammatory [quoted text clipped - 42 lines] >> >>m Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) Melissa, I am wishing you the best of luck with this dr or a different dr of your choice. I hope things work out for you big time. I know raising a child in itself is challenging withouth having to deal with the pain. So I hope you get the outcome you want. SignatureLove and hugs to all Good thoughts coming your way too. Squirrely Jo > Guess maybe I should have given a little more backround into what's going on. > I have a new RD who is trying to convince me I don't have inflammatory [quoted text clipped - 34 lines] > > > >m Can you escape from this doctor? She sounds downright scarey. medicated remission is only there because you have the meds. And can't she learn things from your medical records? Taking a patient off all the drugs that a patient reports as having made the big improvements just because you yourself didn't see it is a direct violation of the Hippocratic oath, methinks. Talk about causing harm to the patient. I hear you about not having the energy to fight, BTDT, but don't let her take you off all your drugs. Change doctors again if you must. Even pay out of pocket for a different doc if insurance balks. It ain't worth it to have a doctor who makes you sick. SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare > Guess maybe I should have given a little more backround into what's going > on. [quoted text clipped - 19 lines] > > melissa Melissa, I had a doctor do that to me several years back. Changed by diagnosis from RA to undifferentiated spondylaprothy with enthesopothy. Decided I needed no meds except maybe the odd tylenol or aspirin. Cut off my gold and started me on a reduction schedule for prednisone, then sent me back to my regular RD. Told me to exercise lots - that was definitely my problem - oh and take amytripline because he said so - that was a good idea. Can you say not a good idea??? Not a friggin good idea??? NUTSO! It took about a year to get over the flare and gold never did work after that even though it wasn't working very well before. I ended up with a diagnosis that was not a good thing, prevented me from drug trials and access to the meds I needed. Eventually we changed my diagnosis back to RA so I could get help - since I fall into the category by definition easily it could be done quite easily however that spondy definition is still in my file. Yes I know it is sort of right - My doctor figures what I have is sort of an orphan type of RA. I have lots and lots of tendon and ligament involvement, none of the back, iritis, spine etc. involvement, hands and feet always flare first and calm down dead last - symetrical, no high sed rate or crp, visible swelling is there, morning stiffness over an hour is almost always there, over 4 - 5 hours without a dmard that is a guarantee. Do not take this - please. It could take months to get you back into shape. Get a second opinion or tackle his thinking. You don't need a long flare - not after sort of getting back sort of under control. Really thinking about you and lending support. Kelly Hi Melissa, I'm typing from someone else's computer that is why i put my name in the title line. I went through the same thing. I was on antibiotic therapy and went to new doc, She told me I had FMS/no arthritis and that I would be just fine. Yea, sure after having this for almost ten years at that time. She ask me to call her and tell her what I was taking when I did she had her "receptionist" call me back and tell me I didn't need my antibiotic and to not take it. I went to my pcp who subcribed it and was crying and ask if she could make me stop taking it. LOL He said no and not to worry about it. From then on I have let him treat me. He is so understanding. I don't show the "regular signs" so he said the RD's don't know what to do with me. I know this is scary, but stick to your guns if you know this is helping. I would be in bed w/o my meds. debbie m. Gold was the thing that helped my FMS the most. The remicade doesn't help me with that -- the acupuncturist helps me the most. Duckie > If you had FMS and you were treating it with enbrel is there a large > possibility that it would help the FMS? > > melissa <who is getting ready to do battle with my crappy RD> Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) > If you had FMS and you were treating it with enbrel is there a large > possibility that it would help the FMS? > > melissa <who is getting ready to do battle with my crappy RD> the one thing I can think of is whether your FMS is primary or secondary. They don't use those terms in FMS any longer, I think, but I still use them in my mind. I really think my FMS is strongly related to my arthritis being poorly controlled. I've had these FMS symptoms in the past and they eased considerably/almost went away when we got a more effective (for a while) DMARD for me. So if you have FMS AND arthritis, the Enbrel could be helping the arthritis and thereby indirectly helping the FMS. But that may be to complex for your crappy RD. SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare |
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