Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 My personal opinion is not everyone is a text book case. Each case needs to be monitored and treated. Try not to let it make you crazy. It can, it can can can !!!!! There is no guarantee for anyone what tomorrow will hold. I just hope it holds hope for a better day..a much better day. Hugs Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 No because your ferritin levels usually drop after the initial onset or after a huge flare, just like most of our other blood work. you may not have active stills going on in your body but the pain is coming from previous damage and other pain syndromes that often accompany stills. I have a great new RD who is really into pain syndromes and says it is very, very, very, common for stills to get better but you have remaining damage and pain. Ferritan? > My doc is telling me that if my ferritan level is low that I may not > have Still's? She just drew blood on Friday. She is a new doc and > seems really sceptical. If my ferritan level isn't 5000, does that > mean I just have RA? I feel terrible but she says I am not swollen. > If anyone has any insight on this please write..... > Thankyou, > LOve Sharon xxoo > > ---------- > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Dear Sharon, You don't have to have a high Ferritin level to have Still's. When the ferritin level is very high it may point to Still's, but not everyone with Still's has this. Just another thing that makes it so hard to diagnose- there's no definite lab test for it. The doctor needs to go by clinical exam the main characteristics are fever , rash , and arthritis and these are cyclical/ don't happen all the time, just some times of day. Then you wake up in the morning and you have no rash and no fever. It's important to have a doctor who doesn't place too much importance on lab test results alone. Best wishes, -beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Sharon, forgot to tell you everything that all the other posters said is true, ferritin is a possible indicator and it seems to be a good indicator but most helpful during the onset. My ferritin is normal has been for years but during my onset I think it was 18,000. My still's is controlled fairly well with enbrel, I just have residual damage and the fibro pain fatigue that makes things difficult and of course this damn AVN in my hip, but things could be worse I always try to look at it that way but some days that it so hard to do. but your doc is wrong and I love saying that!!! This is one disease that most doctors need to really read up on and research and it is often over looked because of the rarity. You know I met someone who is an intersex person ( having male and female genitalia) and it encompasses a whole array of differences in hormone levels, each person is kinda different like we are with stills, but it is so much more common that in stills, one I was reading about occurred in 1 out of 260 births, where ours is 1 out of 100,000 that's one of of one hundred thousand. so I've been doing alot of reading on intersex, transgender stuff like that trying to understand and be a good friend to this person. didn't mean to get off subject, but my point is that any doc would probably know more about transgender, sex changes etc. than they do still's. Ferritan? > > > > My doc is telling me that if my ferritan level is low that I may not > > have Still's? She just drew blood on Friday. She is a new doc and > > seems really sceptical. If my ferritan level isn't 5000, does that > > mean I just have RA? I feel terrible but she says I am not swollen. > > If anyone has any insight on this please write..... > > Thankyou, > > LOve Sharon xxoo > > > > ---------- > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Sharon: boy ya got to love having a new doc .I am in the same boat and it sucks when we tell them we have stills and they say they have never heard of it or like you act like we do not know what we are saying. My ferritian was extremly high one time and never again . it was up in the highly toxic leavels and now never shows . as most said at the start it is normal for it to be high and then drop down and not show again unless it is a big old flair . but the pain and stuff from the past just dose not go away at lest for my self and right now the only thing i am taking and the doc will give me is flexaral for pain. it is okay on most days but on the bad ones it dose nothign for me and he dose not belive in pain pills so now i am on the look out for another doc and at lest trying to find and get him to give me a refural to a roomy. hugs all and lets kick some dragon butt okay! Marty -- Ferritan? My doc is telling me that if my ferritan level is low that I may not have Still's? She just drew blood on Friday. She is a new doc and seems really sceptical. If my ferritan level isn't 5000, does that mean I just have RA? I feel terrible but she says I am not swollen. If anyone has any insight on this please write..... Thankyou, LOve Sharon xxoo ---------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 this is not correct. with my first onset my ferritin level was over 38.000. totally crazy. since then with every flare my ferritin levels were normal but i have stills. it is an indicator, but maybe more so for the initial onset. not sure. your doc needs to read up on stills it seems like tatjana --- Sharon wrote: > My doc is telling me that if my ferritan level is > low that I may not > have Still's? She just drew blood on Friday. She is > a new doc and > seems really sceptical. If my ferritan level isn't > 5000, does that > mean I just have RA? I feel terrible but she says I > am not swollen. > If anyone has any insight on this please write..... > Thankyou, > LOve Sharon xxoo > > ---------- > > > > > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Sharon, My Ferritan Levels have never been really high. They are slightly higher than what is considered the normal range, but they are lower than where they expect a Still's patient to be. The first Rheumy I went to see couldn't see beyond the fact my blood work didn't seem to " cooperate " (My Ferritan levels were all over the place). The Rhuemy I see now listened to my symptoms and read all my medical records. She said sounds like still's, but lets check to make sure. It took 4 months of testing, to eliminate all other possibilities. During this time she also had me try different meds and see how my body reacted. After 4 months, She told me that I wasn't a normal case, but she thought I had still's and was going to treat me accordingly. She told me that she would keep working with me until we had something that would keep the still's under some sort of control. According to my Rhuemy Ferritan levels are just one of the things they look at when determinig what you have. Sharon wrote: My doc is telling me that if my ferritan level is low that I may not have Still's? She just drew blood on Friday. She is a new doc and seems really sceptical. If my ferritan level isn't 5000, does that mean I just have RA? I feel terrible but she says I am not swollen. If anyone has any insight on this please write..... Thankyou, LOve Sharon xxoo ---------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Excerpt from a discussion on a Still's case study on the s Hopkin's web site at..... http://www.hopkins- arthritis.com/case/case11/11_case.html " Although very elevated ferritin levels are associated with AOSD, lower levels do not rule out the disease and are not part of the diagnostic criteria " > > My doc is telling me that if my ferritan level is low that I may not > have Still's? She just drew blood on Friday. She is a new doc and > seems really sceptical. If my ferritan level isn't 5000, does that > mean I just have RA? I feel terrible but she says I am not swollen. > If anyone has any insight on this please write..... > Thankyou, > LOve Sharon xxoo > > ---------- > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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