Guest guest Posted February 18, 2003 Report Share Posted February 18, 2003 This makes no sense to me. For starters, a SED rate of 49 is NOT too bad. That is actually pretty good for someone with inflammatory arthritis. My SED rate hasn't been under 50 in YEARS (and I am 28). I would certainly be interested in what he wants to get " under control " , because I have never heard of this being a reason to NOT start Enbrel. I am also anemic, but my Dr. thinks I am the PERFECT candidate for Enbrel. SED rate normally should be 20 or under, but some people with arthritis go well into the 100's. Everything you mentioned (including anemia) sounds SO NORMAL with this disease, so I just don't get it. What is the Dr.? Is he a Rheum? Yes, one of your meds could be causing the anemia, or it could just be part of the disease for you. I would certainly call tomorrow and ask WHY he feels you need to hold off. Ask what about the bloodwork is concerning him. I agree... if your bloodwork was perfect, why would you need this drug. (obviously you would have found the right drug then) Hmm... In a message dated 2/18/03 6:21:36 PM Eastern Standard Time, liztoth@... writes: > I was supposed to start Enbrel today, but the dermatologist that prescribed > it called this AM to say hold off until we get a handle on some blood tests > that just came in....sed rate 49; hemoglobin 9. > > I have a general idea that the sed rate is determined by the amount of > inflammation going on in my body.....certain combinations of medicines > hopefully get rid of the inflammation and cause the sed rate to come down. > Several months ago my sed rate was 55....if it is 49 now, doesn't this mean > I haven't found the right combination of drugs? (Exactly what is it > *supposed* to be anyway?) Wouldn't starting on the Enbrel maybe reduce the > figure some more? > > I haven't been anemic for years. I've had several blood test done in the > past year and this is the first time I've been below normal on the hemo > test. What would bring this anemia on....my diet is beyond excellent, so > it > may be some of my medication that is doing this? I know that PA and some > types of anemia go together, but why? > > Guess I'm just frustrated....I psyched myself for my first injection and > the > doc calls and says for me to find an internist before we go any > further......my new rheumy appoint will take 3 1/2 months to get into see > him.... > > I'll take any free advise that anyone feels like passing out. > Liz > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2003 Report Share Posted February 18, 2003 I was supposed to start Enbrel today, but the dermatologist that prescribed it called this AM to say hold off until we get a handle on some blood tests that just came in....sed rate 49; hemoglobin 9. I have a general idea that the sed rate is determined by the amount of inflammation going on in my body.....certain combinations of medicines hopefully get rid of the inflammation and cause the sed rate to come down. Several months ago my sed rate was 55....if it is 49 now, doesn't this mean I haven't found the right combination of drugs? (Exactly what is it *supposed* to be anyway?) Wouldn't starting on the Enbrel maybe reduce the figure some more? I haven't been anemic for years. I've had several blood test done in the past year and this is the first time I've been below normal on the hemo test. What would bring this anemia on....my diet is beyond excellent, so it may be some of my medication that is doing this? I know that PA and some types of anemia go together, but why? Guess I'm just frustrated....I psyched myself for my first injection and the doc calls and says for me to find an internist before we go any further......my new rheumy appoint will take 3 1/2 months to get into see him.... I'll take any free advise that anyone feels like passing out. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 Liz, I have never had a really high Sed rate, but always have very high CRP's. Anyway, my hemogloben dropped to 6.7 once and after months of trying everything, they gave me an iron transfusion drip. It took about 7 hours, I had to do it in the Chemo chairs. I felt so guilty knowing that I didn't have cancer, but, I was there with everyone anyway. It really helped. Within a few weeks I got up to a 10.2, which was high enough to do a hysterectomy. Best thing I ever did for myself! I was 36 at the time. I'm 38 now, and have had 14.2 since a few months after the surgery. I feel so much better. Hope this helps! Amy Deel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 In a message dated 2/19/2003 1:11:47 PM Eastern Standard Time, pookiegut@... writes: > > I am also anemic, but my Dr. thinks I am the PERFECT candidate for Enbrel. > SED rate normally should be 20 or under, but some people with arthritis go > well into the 100's. Hi , I don't understand how I can be in so much pain and still have a sed rate of 13. 8i just got this result today. My knees, ankles, back, neck, wrists and fingers ache all over and I need to take Vicodin at night. I just develooped bone spurs on several fingers. I was diagnosed with the PA in December. I don't understand how my sed rate can be normal. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 My sed rate is usually about a 25 and I feel like I am in pain 24/7. If you are in pain , you know it so I would not worry to much about the sedrate. If you are on arthritis med does that make the sedrate go down?? I wondered the same thing since my sedrate is not that high and thought maybe it was all in my mind... Joy Re: [ ] Sed rates-Anemia > In a message dated 2/19/2003 1:11:47 PM Eastern Standard Time, > pookiegut@... writes: > > > > > I am also anemic, but my Dr. thinks I am the PERFECT candidate for Enbrel. > > SED rate normally should be 20 or under, but some people with arthritis go > > well into the 100's. > > Hi , > I don't understand how I can be in so much pain and still have a sed rate of > 13. 8i just got this result today. My knees, ankles, back, neck, wrists and > fingers ache all over and I need to take Vicodin at night. I just develooped > bone spurs on several fingers. I was diagnosed with the PA in December. I > don't understand how my sed rate can be normal. > Janet > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 Hi Janet, Yes, it does make sense unfortunately. I have a friend with RA who is severely deformed, and she has ALWAYS had a normal SED rate. This happens sometimes, and Drs. don't know why. My SED rate has been high since the onset of this, so my Dr. KNOWS that it is a good indicator of how active my disease is. Since yours is not high, it probably never has been, and will never be a good indicator for how active the disease is. I wish I could give you a reason why it's this way in some but not others, but I can't! Were you having symptoms before December? Your disease sounds very active for a newly diagnosed patient, but I know it happens that way sometimes. In a message dated 2/19/2003 10:45:17 PM Eastern Standard Time, fam24 writes: > Hi , > I don't understand how I can be in so much pain and still have a sed rate of > 13. 8i just got this result today. My knees, ankles, back, neck, wrists and > fingers ache all over and I need to take Vicodin at night. I just develooped > bone spurs on several fingers. I was diagnosed with the PA > in December. I > don't understand how my sed rate can be normal. > Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 wrote: > Your disease sounds very > active for a newly diagnosed patient, but I know it > happens that way sometimes. It has been that way for me. My PA was just in my toes for about six months, and then it was like something just set it off and literally every two weeks I had a new joint affected -- and not just mildly, but severely each time. It is now practically everywhere, and I believe it has just newly moved into my hips as well. I was only diagnosed in October, and when I came back to the RD in November he was stunned at the rapid progression. He said my PA was like a " steam engine going full force with no brakes " . :-( It was only a few weeks ago that I read that PA doesn't normally progress this quickly. I just assumed I was a typical case, but as usual, I have to be abnormal. ;-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 In a message dated 2/20/2003 3:27:03 PM Eastern Standard Time, pookiegut@... writes: > Since yours is not high, it probably never has been, and will never be a > good indicator for how active the disease is. I wish I could give you a > reason why it's this way in some but not others, but I can't! > > Were you having symptoms before December? Your disease sounds very active > for a newly diagnosed patient, but I know it happens that way sometimes. > Hi , I have had symtoms for about 10 years. It started slow and has gotten worse as the years went on. I went to the same idiot rheumy on and off for years who did not diagnose me right. Being in the medical field myself (medical asst), I asked him years ago if I had this and he said no. My sed rate is always normal and you are right because this will never be a good indicator. In December, when I developed problems in my fingers, the derm diagnosed me and sent me to a great rheumy who confirmed it right away. For some reason after my knee surgery 9/9, I starting going downhill fast. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 In a message dated 2/20/2003 4:36:49 PM Eastern Standard Time, tljohnson@... writes: > had a new joint affected -- and not just > mildly, but severely each time. It is now > practically everywhere, and I believe it has just > newly moved into my hips as well. I was only > diagnosed in October, and when I came back to the RD > in November he was stunned at the rapid progression. > He said my PA was like a " steam engine going full > force with no brakes " . :-( Hi , That is exactly how I feel. Excuse the expression, but I feel like the shit hit the fan. I just had mild symptoms and then wham. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 Yes, Meds do normally make the SED rate go down. In a message dated 2/20/2003 1:42:08 PM Eastern Standard Time, jhoorm01@... writes: > My sed rate is usually about a 25 and I feel like I am in pain 24/7. If you > are in pain , you > know it so I would not worry to much about the sedrate. > If you are on arthritis med does that make the sedrate go down?? > I wondered the same thing since my sedrate is not that high > and thought > maybe it was all in my > mind... > Joy Quote Link to comment Share on other sites More sharing options...
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