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Medical Forum / Diseases and Disorders / Lupus / May 2004Oh My. . . .An UPDATE~Kinda Long ! :)
Hi everyone, I just wanted to post a bit of what has been going on. . . well it has been a long winter here in the North East (to say the least) so of course I have had the regular aches and pains. . . but I have been trying to decreas my Pred for about 4 months. . . 2 times I have gotten down to 5mg and once I even got down to 4 but all three times I have only been there for about a week or 2. . . seems my blood counts go a bit "wacky" when I am doing this. . . and Hemolysis begins to show its face again. . .uugh. . .this has been so frustrating for me. . . my Doc.'s want me to get off the stuff as we all know it will eventually "melt my bones" but my biggest complaint with this med is the tremors I get and the mood swings that are showing up withought warning. . . sometimes feels like my eyes are full of water again too. . .I remember when I started the Pred @ 80 mg and I felt all of these things but I didn't expect to feel like I did on 80mg when I am all the way down to 4 or 5 . . . well for now I am back up on 6mg but I am going to decrease 1mg today so I will try to be @ 5 again for a bit! ! ! I am wondering if anyone else has this problem below 6mg. . . the other thing I am wondering is"HOW LONG" do you stay @ a decreased dose before you decrease again?". . . I have been trying like 1mg every 2 weeks. . . maybe I need to stay on a dose (while decreasing) a bit longer. . . I haven't seen my Rheumy since Feb. . .I was suppose to see him in Apr. BUT I CANCELLED that appt.. . . I am kinda p***ed @ my Rheumy right now. . . my last visit I was having a down day and my body was so sore. . .I told him I didn't think that my Placquinil was doing anything for me(I am soooo stiff & sore ALL the time! ! !). . . and he reiterated how he wanted me to "get off" the Prednisone. . . I mentioned how frustrated I was and broke down in tears in his office. . . well his response to my tears was that maybe"I should get my hormones checked". . . I really feel. . ."My Hormones" are a VERY small part of my problem @ this point. . . which is exactly what I told my GP last week. . . even he agrees that there are many other drugs we can try to help me feel better and doesn't really understand what my Rheumy is doing for me, and also things my hormones are NOT my problem. . . but mor like I am "Frustrated" with this disease right now!. . . so I promised I would make another appointment with the Rheumy. . . but even my GP says he has one more shot. . . and then we look for another Rheumy. . .the one I have is suppose to be one of the BEST in this area. . .that is why my GP sent me to him. . . but even my GP is getting discouraged. . . he mentioned replacing the Pred with Methotrexate (sp?) basically going from 1 to the other. . . but I don't have any knowledge of this med. . . side effects ect. . .ect. . . but we have a little time before I see my GP agin (not till June14th) so I guess I am gonna have to try to wean down on the Pred before then. . . I don't know when my appt with my Rheumy will be I have to call this week for an appt. . . so we will see what his attitude is when I see him.. . . oh another thing I am curious about is my ANA. . . I have never really paid attention to the numbers but it seems it is @ 116 right now. . . and apperantly my c3 is very low as well. . . not sure of the # for that but I guess it tells my Doc that there is something still flareing. . . uugh. . . I wish I wasn't such an "Interesting" case. . . sometimes it makes me feel like a mouse in a lab or something. . .with my APLS, Fibro, Auto Immune Hemolytic Anemia. . . the Arthritis. . .and of course THE BIG ONE is "The Lupus"! UUGH. . . sometimes I swear if I hear "You are an exceptionally Unusual Case" one more time. . . I am going to choke someone. . . oops. . .slipped out . . .sorry. . . I don't really care HOW UNUSUAL I am I just want to be able to live more normal. . . move better and try to be a more normal 34yr old. . . there . . .I said it all. . . now I hope you guys can help me out. . . any knowledge of anything I have mentioned above would be so helpful. . . Thanks for listening to me ramble. . . sorry this is soooooo long. . . but I am so glad to be back. . . missed all of you. . . ~HUGS~Aimee Aimee Believe me girl, you are doing terrific cutting down the prednisone. 6mg is good compared to the 80mg you were on but the shock to your system, from the 80 is why you are having a rough time cutting back. Now believe me, I have done the same, plus the shots in the "buns" if you get my drift, so it is very hard to taper down. I have gotten one year, down to 3mg of medrol which is equivalent to about 4mg of prednisone. THAT was a year or so ago and since then I have had to UP and UP and UP again, then taper taper taper, for the same reason your doc wants you to do it. MELT YOUR BONES!!!!!!! good response, never heard that one before, but I will keep that in my mind for sure. NOW you do take calcium supplements right? Have you had a Dexa scan done? check dem bones, dem bones, and see if they are MELTING. If not then the doc knows that it isn't happening and your taper may take a LONG time. But do not be discouraged, cause it will happen, it just sometimes takes a "H" of a long time for us. Frustration is a good deal a part of our lives. you wake up one day, feel like "man this is going to be a good one" Then you eat a little "breakfast" POP them pills and about an hour later, or before, you start to feel like "crap again" So frustrated? Hell yes, and sometimes it gets very discouraging and upsetting. "why me" "why can't I have a good day" Pisses me off type feeling. sorry folks. BUT you do feel that. Then all of a sudden you have a day where, MY goodness, this is great, I might be in remission, HOLY MOLEY, and you have fun and relax and think I am over the hump, only to try later in the evening to get your buns off the chair and bingo, your knees, hips and ankles do not want to go. So here comes the tears and you think OH so..., here we go again. So why wouldn't this play on emotions. Cortisone alone will play on emotions, so will this disease. Hormone, so play a role also. Get the blood levels and see for yourself. Then if normal shove it, excuse me, show it to the rheumy and say well? Then get a Dexa scan and say well? If you feel you are not being treated with dignity and respect tell him, right out? That will shock him, and make him listen to you, if not, then he ain't worth going back too. YOu are the ruler over your body, you should have a definite say so in your treatment but he is right about the cortisone. You are a young woman, and here I set at 58..Oppps no no , but I have been on medrol (cortisone) since 93 and still on it but trying now to get off it with imuran. My bones in my spine are slowly getting worse, do I worry, "HECK yes, but I do have a rheumy that watches over me, I know that if they get worse there are meds out there that will help make my bones stronger, either oral meds or IV, so I figure to hell with it sometimes. I figure live life now, get pain control and if you want, Cry cry cry. Aimee, it sometimes works for me, but sometimes not. Counselor sessions also help and believe me with out being able to talk about your illness, don't help one bit. You need someone to talk to, get that person and shout and yell,you deserve a release valve. But don't go outside, you don't want to scare the neighbors hahaha. COME ON joke time. huggies janers Thanks for the advice Janners. . . I guess I will try to be more paitent with my cutting down . . .6 is better than the 80 I started at. . . but still gets discouraging when I have been able to cut down fine every time. . .until this dose! ! ! ! No I haven't had a Dexa Scan. . . I have an idea what it is. . .but haven't had one. . .and yes I am suppose to be taking a calcium supplament. . . but the one I was taking was just too big to swallow 2x/day so I haven't takin it since it made me gag about a month aga. . .I know. . .BAD BAD BAD. . . I am trying to find one that isn't so big. . .iI am funny with pills like that. .. I have often wondered IF I will ever get to be in Remission actually. . . with my blood problem I am probably NOT going to get there any time soon. .. .but I still want to get off the Pred. . . I am not sure Replacing the Pred with Methotrexate is really the answer. . . isn't that worse than the Pred? I feel a bit better (my bones) this week now that I have restarted the Celebrex. . . My GP gave it back to me after my Rheumy took it away and said NO MORE celebrex. . .my GP said I need something and there is no reason for me to Not be able to move or be in that much pain with all the Med options that are available. . . he is the best. . . he doesn't really know what my Rheumy's problem with the celibrex is. . .but told me to start taking it again if it works for me for now. . .along with the Naproxen for pain. . . now the Celibrex helps with the stiffness & joint pain . . .but not much really helps for the muscle pain. . .i guess that is from the Pred. . .so if I get rid of it . . .maybe that too will go away. . . .time will tell I guess. . . . . .I am going away this weekend to my daughters dance competition so I wont be back for a couple of days. . .I will post more then. . .thanks for your "wise words". . .and encouragement. . . so missed that . . . Gotta run for now. . .~HUGS~Aimee Hi Aimee I take a calcium supplement called Calcitriol. The tablets are small - football shaped capsules actually - and really easy to take. Winny > Thanks for the advice Janners. . . I guess I will try to be more paitent > with my cutting down [quoted text clipped - 24 lines] > then. . .thanks for your "wise words". . .and encouragement. . . so missed > that . . . Gotta run for now. . .~HUGS~Aimee > Hi everyone, > I just wanted to post a bit of what has been going on. . . well it has been [quoted text clipped - 5 lines] > . . and Hemolysis begins to show its face again. . .uugh. . .this has been > so frustrating for me. . . <big snip> At these low doses going slow (after the large doses you have been on) is the name of the game. Two weeks seems like a short time to me after Linda's experience. You also can split those onesies in half (get a pill splitter). And Linda has not gotten below 4 in the last 20 yrs. What a c..ppy thing for your rheumy to say. Good luck Timothy Thanks Tim. . .I think that is the plan....to split the onesies in 1/2. . . I am down to 5mg for a bit . . just dropped yesterday but i think I will have to stay here for a bit. . .then I think I am suppose to drop to 4.5 for the next drop. . . so I am hoping it will be a better way too taper. . . whenever the NEXT drop will be. . . most of the times I have tried to get below 6mg I have had to reup to 10 and start over. . . so this time I will just have to go slower. . . thanks so much for the advice. . .~Hugs~Aimee > > Hi everyone, > > I just wanted to post a bit of what has been going on. . . well it has been [quoted text clipped - 17 lines] > > Timothy ah Ms. Crud Blood, I wonder if BJ remembers. She's exceptionally unusual too (is my understanding). She's been on Imuran Have you and your docs ever considered that? Long winter isn't it? It snowed here yesterday and I'm probably North of you. Hey Aimee, if he mentions hormones again, ask him if he's going through "male menopause or what?" <smile> Venting helps so vent away, I'm listening. Big hugs to you and thanks for letting us into your life. J > Hi everyone, > I just wanted to post a bit of what has been going on. . . well it has been [quoted text clipped - 54 lines] > listening to me ramble. . . sorry this is soooooo long. . . but I am so glad > to be back. . . missed all of you. . . ~HUGS~Aimee Yes. . .Crude Blood is certainly 1 way to put it. . .i do remember Bj having allot of similar problems as me in the blood department. . . I am going to have to mention the Imuran vs. the Methotrexate they have started talking about. . . I think I would actually rather try the Imuran. . .the latter doesn't sound very good. . . Thanks for the words of encouragement. . . I really didn't know how to react to my Rheumy telling me maybe I needed my hormones checked. . . I can hardly belive he treats people with Lupus and this be the first time a paitent had broken down in tears in his office. . . I am usuall a very strong person and don't ever cry in front of many people. . .then he makes a comment like that. . .UUGH. . . Unbeliveable. . . I think I actually could have "choked" him if he were a bit closer. . .lol. . . thanks for the smile~Hugs~Aimee > ah Ms. Crud Blood, I wonder if BJ remembers. She's exceptionally unusual too (is > my understanding). [quoted text clipped - 69 lines] > > listening to me ramble. . . sorry this is soooooo long. . . but I am so glad > > to be back. . . missed all of you. . . ~HUGS~Aimee Hi Aimee, I went off prednisone too, even though I had several doctors(specialists) who were opposed to the idea. I wanted to try it to see what would happen. I see J mentioned "crud blood." That is one of the biggest problems with me too. I found that I had a sudden drop in my platelet count when I first got off the pred. It went up again on the next blood test. I thought of it as a natural correction, or adjustment to being off the pred. I think the method of reduction you are doing is much like what I did. Everybody is different, though, so maybe you do need to go slower. J also mentioned Imuran. I am on that. Maybe it is something you could try too. Someone on the ng said they could not take that. I can't remember if it was you or not. I have become resigned to the fact that my blood problems can not be solved. I have the blood work of a chronic alcoholic, even though I am a non drinker. I have to admit that I always feel bad when a doctor questions me on my alcohol consumption. They can't think of any other reason why my blood is this way. I actually felt like crying too, when the hematologist asked my husband if it was true that I didn't drink. Would it have been "my hormones" if I had? Gad, sometimes doctors just don't get it. Living with these problems day after day would make them cry too. Try not to let it get you down. BJ-Sk. Canada > Hi everyone, > I just wanted to post a bit of what has been going on. . . well it has been [quoted text clipped - 54 lines] > listening to me ramble. . . sorry this is soooooo long. . . but I am so glad > to be back. . . missed all of you. . . ~HUGS~Aimee > I have become > resigned to the fact that my blood problems can not be solved. I have the [quoted text clipped - 5 lines] > Gad, sometimes doctors just don't get it. Living with these problems day > after day would make them cry too. Try not to let it get you down. Hugs BJ, I wish you'd post the situation to sci.med J > > I have become > > resigned to the fact that my blood problems can not be solved. I have the [quoted text clipped - 8 lines] > Hugs BJ, I wish you'd post the situation to sci.med > J I was just reading this http://foxdianasden.com/Health.htm Some patients will present with mild liver dysfunction and have only laboratory abnormalities as their initial presentation. AUTO-IMMUNE HEPATITIS: Chronic active hepatitis (CAH), or autoimmune hepatitis, is a chronic inflammatory autoimmune disease of the liver. It usually occurs by itself. What differentiates autoimmune hepatitis from other types of CAH is the presence of auto antibody markers, which may vary in titer with disease activity. Such auto antibodies are not found in the other forms of CAH, particularly CAH associated with alcohol abuse. The one exception is a type of drug-induced CAH in which auto antibodies are present; but with the withdrawal of the offending medicine, the conditions subside. <so I'm wondering if maybe that's what you have but the Imuran is keeping it under control?> J Gee J. I never really thought of that possibility. My liver panel has always been okay, but maybe it is the Imuran that keeps it that way. You must be thinking all of the time. Clever girl. Hugs, > > > I have become > > > resigned to the fact that my blood problems can not be solved. I have the [quoted text clipped - 25 lines] > control?> > J Hi J, I did post on sci.med about a year ago, I believe. The only response I got was from someone asking me if I was an alcoholic. I said I was a non-drinker, and there was silence after that. I think that stumped them too. > > I have become > > resigned to the fact that my blood problems can not be solved. I have the [quoted text clipped - 8 lines] > Hugs BJ, I wish you'd post the situation to sci.med > J > Hi J, > I did post on sci.med about a year ago, I believe. The only response I got > was from someone asking me if I was an alcoholic. I said I was a > non-drinker, and there was silence after that. I think that stumped them > too. Hi BJ, That was sci.med.pathology, not sci.med sci.med has some doctor types and others' interested in unusual situations (sometimes). You could post "crud blood" Tell them age/F, how long on Pred, when this crud blood started... teetotaller... ask them what other condtions or foods could cause that? Ask them if it can cause severe fatigue Ask them if it can cause difficulties with oxygen transport and lung function (or the reverse). The medications you are on and whether the crud blood started before the medications. The fact that one rheumy and 2? hematologists don't know. That you are in Canada and too ill to travel to a specialist elsewhere (in case a wise guy says "see your doctor") See what they say. (don't feed them possible answers, just read the replies for a bit before replying unless one needs an answer to a question). Hugs J Hi Bj, I think we have very similar blood. . .I have had every Doc so far ask me if I "Drank" I have drank alcohol. . .i do like an occasional beer or glass of wine. . . but nothing like they mean. . . so I know what you mean by being a bit embarrassed by that. . . it is like an insult. . .to who I am or something. . .NO I am not a Drunk that did this to herself for sure. . . it is the most frustrating part. . . when they don't know what has caused my cells to be soooo large and my blood to be sooooo crudy. . . I think I am going to ask my docs about trying the Imuran. . . I have had alot of different meds mentioned in the past but we have just stayed with the Placquinil and Pred. . .and now the Celebrex again. . . but I think I would rather try the Imuran than the Methotrexate. . . for sure. . . another med that was mentioned in the begining was Remicade. . . but I haven't heard anything about it in a long while. . .and i haven't come accross anyone with Lupus that has actually tried it. . . so I really don't know why it was a consideration at 1 time. . .but if there are other drugs to try before the Methotrexate . . . then I would like that better. . .the stuff just doesn't sound good. . .although I don't know much about the stuff. . . Thanks for your words of encouragement. . .I will try not to let it get me down again. . . I should know better, being such an UNUSUAL case. . .they haven't known what to do with me from the beginning. . so I guess it is never going to be much different. . . I just wish I would understand all the #'s they throw @ me with my labs. . . like my ANA being 116. . . and my C3 being on the low sid (forgot the actual#) but all it tells me is that my Lupus is still active. . .DUH. . . but then they will say they don't know what it is attacking (or affecting). . . .sometimes I get sooooo frustrated . . .these are DOCTORS. . . .why can't they figure out HOW to fix me. . . lol. . . but I have come to the conclusion. . . I must be an Exceptionally STRANGE case. . . lol. . .well enough for now. . .I will be back some time on Mon. . .my daughter has a Dance competition over the weekend so I will be out of town. . . but i will check the NG as soon as I get back. . . and post more then. . .It is soooo good to be able to get here again. . . I just can't tell you guys. . .Thanks. . .~HUGS~Aimee > Hi Aimee, > I went off prednisone too, even though I had several doctors(specialists) [quoted text clipped - 101 lines] > glad > > to be back. . . missed all of you. . . ~HUGS~Aimee Hi Aimee, I have the big fat red cells too. I think that is what prompts them to ask about alcoholism. I guess the two of us are in the same boat. Imuran seems to have worked well for me. It takes a fair length of time to kick in though. I have heard of Remicade being used a lot for people with RA. I don't think anybody here takes it, but I could be wrong. That happened once. <g> I can't take Celebrex because I am allergic to sulpha. I have tried Vioxx, but the results weren't all that great. Let me know if you ever get a "crud blood" explaination. It would be cool to know the answer. BJ-Sk. Canada > Hi Bj, > I think we have very similar blood. . .I have had every Doc so far ask me if [quoted text clipped - 163 lines] > > glad > > > to be back. . . missed all of you. . . ~HUGS~Aimee |
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