Question:

Hi everyone,   I don’t think I’ve ever posted before, but I do read the board fairly regularly.  My name is Janet, and I’m a 41 y.o. mother of three.  I have a question regarding prednisone tapering.  A brief (or at least I’ll try to be brief) hisotry.  Back in Sept. ‘99 I started having horrible rashes all over my body accompanied by difficulty breathing.  I was also 7 months pregnant at the time.  The following month, my son was stillborn. Immediately afterwards, my skin problems worsened, my joints became stiff and swollen, and my breathing even more labored.  From that time on, I have been under the care of a rhuematologist for "Connective Tissue Disease Syndrome" (I don’t quite fit any of the chapters in the Rhuemie book), and my condition has GREATLY improved. Now to my question.  After being on as much as 50mg of Prednisone a day I had finally gotten down to 5 mg and stayed there for aboutt 6 months.  Back in January, my doc told me I really had to start tapering off it again, so he dropped me to 4. All was going well until about a month or so ago when I noticed I was definitely achier, my skin redder, but even more disconcerting, my mood much darker.  I feel sad all the time–something really not normal for me.  My question is, can just 1mg of prednisone make that much of a difference? and so long after the initial reduction?  Is this maybe the beginning of a flare? or just caused by stress (there are a lot of really stressful things going on right now–med/mal lawsuit, divorce, mom’s gravely ill,–bad year).  I haven’t had a chance to talk to my doctor (he’s on vacation), but I am curious if anyone out there has noticed such a fine line between feeling great and feeling miserable when taking prednisone. Sorry this was so long, but THANK YOU for any insights. Janet

Response:

only a quick yes here headin out the door… a half a mg drop got me going like that. depression fatigues and so forth. Paula from AL – Hide quoted text — Show quoted text -> From: jane…@aol.com (Janetjc) > Organization: AOL http://www.aol.com > Newsgroups: alt.support.lupus > Date: 13 Apr 2002 16:36:14 GMT > Subject: Question about prednisone, tapering, and depression > Hi everyone,   > I don’t think I’ve ever posted before, but I do read the board fairly > regularly.  My name is Janet, and I’m a 41 y.o. mother of three.  I have a > question regarding prednisone tapering.  A brief (or at least I’ll try to be > brief) hisotry.  Back in Sept. ‘99 I started having horrible rashes all over > my > body accompanied by difficulty breathing.  I was also 7 months pregnant at the > time.  The following month, my son was stillborn. Immediately afterwards, my > skin problems worsened, my joints became stiff and swollen, and my breathing > even more labored.  From that time on, I have been under the care of a > rhuematologist for "Connective Tissue Disease Syndrome" (I don’t quite fit any > of the chapters in the Rhuemie book), and my condition has GREATLY improved. > Now to my question.  After being on as much as 50mg of Prednisone a day I had > finally gotten down to 5 mg and stayed there for aboutt 6 months.  Back in > January, my doc told me I really had to start tapering off it again, so he > dropped me to 4. All was going well until about a month or so ago when I > noticed I was definitely achier, my skin redder, but even more disconcerting, > my mood much darker.  I feel sad all the time–something really not normal for > me.  My question is, can just 1mg of prednisone make that much of a > difference? > and so long after the initial reduction?  Is this maybe the beginning of a > flare? or just caused by stress (there are a lot of really stressful things > going on right now–med/mal lawsuit, divorce, mom’s gravely ill,–bad year). > I > haven’t had a chance to talk to my doctor (he’s on vacation), but I am curious > if anyone out there has noticed such a fine line between feeling great and > feeling miserable when taking prednisone. > Sorry this was so long, but THANK YOU for any insights. > Janet

Response:

Janet   First let me say HOW sorry I am about your still born child. How sad to have that happen.  (((((HUGS))))) Now for the cortisone yes it can happen.  I notice a lot of changes in a few days being tapered.  It takes the body time to adjust to the drop, even with a little amount like that. My rheumy just makes me go up a few days and then back down slower than before.  It usually helps but I was down to as low as 2mg of medrol for quit awhile and then boom, had to up it back to 8mg a day to get me stable again.  Now I am still on 4mg and holding. YOUR rheumy like mine, does not like you to be on cortisone for any length of time.  BUT I have to say this, IT is the only thing that seems to work for me. Have YOU had bone density studies and tests to make sure your bones have not been effected by the cortisone? I also can understand why your doctor has given you that type of diagnosis.  Happens to a lot of us. The stress alone you are experienceing is a big amount here.  I am sorry for that. YES that can trigger flares too, big time.  and from what you said, you have a lot going on. One thing I would like to ask is, what type of rashes did you have and what do you mean by " skin redder???"  Can you explain more? I would just ask my doctor right out, what other treatment options there are for you, and why is it that 5mg is so bad.  After all you were on 50mg to start out with.  Maybe he can give you a better understanding of "the why" . I know that prednisone for long periods of time is NOT good for the body, but sometimes we have no choice in that type of treatment to get over the humps, so to speak. Please come back and post any time.  This is a great place to vent also, and it looks like you have a lot to talk about.  We are here for you, this is a great bunch and believe me when I say..  What one has not had happen, someone else has. LOL. Take care and let me know janers

Response:

Hi Janet. Welcome to the group. I am glad that you posted to ask your question. I think your problem could be caused by any of the three things you mentioned It could be stress. I noticed that you certainly have more than your share of that. It could be that you are going into a flare. I also believe it could be the reduced prednisone. I have been on 60mgs, along with Imuran. I am now down to 5mgs pred and 150mgs Imuran. I did go off the pred completely for a while. My blood work was not nearly as good and I didn’t feel as well, so I am now on 5mgs pred again. Is there any particular reason why your doctor is so anxious to get you off the pred completely? I say that although nobody wants to be on it; it is a quality of life issue. I also wondered if your doctor has tried other drugs such as plaquinil or imuran, either alone or in combination with pred. That may allow you to reduce your pred or get off it completely. I hope I have been of some help. Please feel free to talk to us any time. You are dealing with so much right now. You will always find a sympathetic ear here. BJ-Sk. Canada "Janetjc" <jane…@aol.com> wrote in message

news:[email protected]… – Hide quoted text — Show quoted text -> Hi everyone, > I don’t think I’ve ever posted before, but I do read the board fairly > regularly.  My name is Janet, and I’m a 41 y.o. mother of three.  I have a > question regarding prednisone tapering.  A brief (or at least I’ll try to be > brief) hisotry.  Back in Sept. ‘99 I started having horrible rashes all over my > body accompanied by difficulty breathing.  I was also 7 months pregnant at the > time.  The following month, my son was stillborn. Immediately afterwards, my > skin problems worsened, my joints became stiff and swollen, and my breathing > even more labored.  From that time on, I have been under the care of a > rhuematologist for "Connective Tissue Disease Syndrome" (I don’t quite fit any > of the chapters in the Rhuemie book), and my condition has GREATLY improved. > Now to my question.  After being on as much as 50mg of Prednisone a day I had > finally gotten down to 5 mg and stayed there for aboutt 6 months.  Back in > January, my doc told me I really had to start tapering off it again, so he > dropped me to 4. All was going well until about a month or so ago when I > noticed I was definitely achier, my skin redder, but even more disconcerting, > my mood much darker.  I feel sad all the time–something really not normal for > me.  My question is, can just 1mg of prednisone make that much of a difference? > and so long after the initial reduction?  Is this maybe the beginning of a > flare? or just caused by stress (there are a lot of really stressful things > going on right now–med/mal lawsuit, divorce, mom’s gravely ill,–bad year).  I > haven’t had a chance to talk to my doctor (he’s on vacation), but I am curious > if anyone out there has noticed such a fine line between feeling great and > feeling miserable when taking prednisone. > Sorry this was so long, but THANK YOU for any insights. > Janet

Response:

Hi Janers, Thank you for your expression of sympathy–I really appreciate that. >what do you mean by " skin redder???"  Can you explain more?

Think sunburned skin but only in certain areas-chest, back, cheeks (face-lol), and curously my left arm (where it all began).  Then on only the arm, add dry scaly patches and scabby looking circles and scratches.  Kind of yucky to say the least so I try to wear long sleeves a lot. As for my bones, I’ve had two density checks and while I’m not losing anymore,I’m also not where I should be (about 1.8 standard deviations below). I’ve been taking Fosamax since this all began. My other meds include Imuran, Plaquenil and Celebrex for the CTD and Synthroid for hypothyroidism.  Now I’m wondering if I should add an antidepressant or simply ask to up my prednisone and see if these blues go away. Or do I simply tough it out and see if my body can get used to the lower dose.  It’s ironic because in the past I begged and pleaded for my rheumy to cut my meds, and now, I’m like,"Whoa, stop that, these meds are my friends." I am glad that I found this board.  I think I can learn a lot from you all, and hopefully, I may even be able to add some insights someday. Janet in GA  

Response:

Hi Janet, I don’t have any answers to your questions but I did want to welcome you to the group.  Yes, I am sure that you can both learn something here and also provide some insight from your own experiences.  So make sure that you hang around.  You will discover that we can all be both serious having lots of info to share and we can great sense(s) of humor!  Almost anything goes. Hugs, Sherry "Janetjc" <jane…@aol.com> wrote in message

news:[email protected]… – Hide quoted text — Show quoted text -> Hi everyone, > I don’t think I’ve ever posted before, but I do read the board fairly > regularly.  My name is Janet, and I’m a 41 y.o. mother of three.  I have a > question regarding prednisone tapering.  A brief (or at least I’ll try to be > brief) hisotry.  Back in Sept. ‘99 I started having horrible rashes all over my > body accompanied by difficulty breathing.  I was also 7 months pregnant at the > time.  The following month, my son was stillborn. Immediately afterwards, my > skin problems worsened, my joints became stiff and swollen, and my breathing > even more labored.  From that time on, I have been under the care of a > rhuematologist for "Connective Tissue Disease Syndrome" (I don’t quite fit any > of the chapters in the Rhuemie book), and my condition has GREATLY improved. > Now to my question.  After being on as much as 50mg of Prednisone a day I had > finally gotten down to 5 mg and stayed there for aboutt 6 months.  Back in > January, my doc told me I really had to start tapering off it again, so he > dropped me to 4. All was going well until about a month or so ago when I > noticed I was definitely achier, my skin redder, but even more disconcerting, > my mood much darker.  I feel sad all the time–something really not normal for > me.  My question is, can just 1mg of prednisone make that much of a difference? > and so long after the initial reduction?  Is this maybe the beginning of a > flare? or just caused by stress (there are a lot of really stressful things > going on right now–med/mal lawsuit, divorce, mom’s gravely ill,–bad year).  I > haven’t had a chance to talk to my doctor (he’s on vacation), but I am curious > if anyone out there has noticed such a fine line between feeling great and > feeling miserable when taking prednisone. > Sorry this was so long, but THANK YOU for any insights. > Janet

Response:

Hi again Janet, I am wondering about the Celebrex. It is a sulpha drug. I can’t take it because of allergy. Apparently that is common in lupus patients and in people with other autoimmune diseases. Perhaps Vioxx would be a better choice for you. BJ-Saskatchewan "Janetjc" <jane…@aol.com> wrote in message

news:[email protected]… – Hide quoted text — Show quoted text -> Hi Janers, > Thank you for your expression of sympathy–I really appreciate that. > >what do you mean by " skin redder???"  Can you explain more? > Think sunburned skin but only in certain areas-chest, back, cheeks (face-lol), > and curously my left arm (where it all began).  Then on only the arm, add dry > scaly patches and scabby looking circles and scratches.  Kind of yucky to say > the least so I try to wear long sleeves a lot. > As for my bones, I’ve had two density checks and while I’m not losing > anymore,I’m also not where I should be (about 1.8 standard deviations below). > I’ve been taking Fosamax since this all began. > My other meds include Imuran, Plaquenil and Celebrex for the CTD and Synthroid > for hypothyroidism.  Now I’m wondering if I should add an antidepressant or > simply ask to up my prednisone and see if these blues go away. Or do I simply > tough it out and see if my body can get used to the lower dose.  It’s ironic > because in the past I begged and pleaded for my rheumy to cut my meds, and now, > I’m like,"Whoa, stop that, these meds are my friends." > I am glad that I found this board.  I think I can learn a lot from you all, and > hopefully, I may even be able to add some insights someday. > Janet in GA

Response:

Janetjc wrote: > [gentle snips] Back in Sept. ‘99 I started having horrible rashes all over my > body accompanied by difficulty breathing.  I was also 7 months pregnant at the > time.  The following month, my son was stillborn. Immediately afterwards, my > skin problems worsened, my joints became stiff and swollen, and my breathing > even more labored.  From that time on, I have been under the care of a > rhuematologist for "Connective Tissue Disease Syndrome" (I don’t quite fit any > of the chapters in the Rhuemie book), and my condition has GREATLY improved. > [gentle snips]-med/mal lawsuit,

Hi Janet, I’ve seen these symptoms mentioned elsewhere (besides here). Lyme disease subclinical infection  (possibly staph infection) – since you mentioned mel/mal lawsuit (best not to discuss it here, if it’s ongoing) Staph goes around in hospitals and/or places where surgeries are done.  (e-mail me if you wish) Also allergies and asthma improve with Corticosteroids allergies – rash thyroid problems and stress = rash (has that been checked? coz sometimes thyroid can flare around pregnancy asthma – labored breathing http://www.nlm.nih.gov/medlineplus/druginfo/corticosteroidsglucocorti… but infections can fester and get worse <Corticosteroids can cause slower healing, worsen existing infections, or cause new infections > Apparently even ulcers can get infected (in the GI tract)..oops what am I saying…they now treat (some) ulcers with antibiotics. So it would be no surprise if you had any of the above (except Lyme) that Prednisone would improve your symptoms and dropping back on the pred would cause the symptoms to start up/worsen again. Lyme is probably remote but possible I suppose. No idea what the treatment is for that. Infection, obviously, find it and treat accordingly (but no sulpha antibiotics/meds). Allergies and asthma – see a pulmonologist/allergist. Here’s another possible – http://www.postgradmed.com/issues/2000/01_00/katta.htm Acute episodes of erythema multiforme should be treated with symptom-relief measures, such as  topical corticosteroids and antihistamines. Oral prednisone, used often in the past, may partially  suppress symptoms but may also prolong attacks (8). <snip> Which doesn’t mean you don’t have Lupus but might explain the confusing symptoms and their inability to pinpoint which type of Lupus (if any) that you have.  Some people here have rashes mostly in their upper body too, if I recall correctly. (sun exposure?) So some possibles for you to recheck your records to see if you’ve been screened for any/some of the above. Not sure where to go with all this, but along with losing your baby and the other concerns, it’s no wonder you are feeling low. Are you taking a mild anti-depressant?  Perhaps something like that might help, while you sort out the Pred and other possibles. Best, J

Response:

Ditto! "Sherry" <sstof…@inreach.com> wrote in message

news:iH_t8.2496$[email protected]… – Hide quoted text — Show quoted text -> Hi Janet, I don’t have any answers to your questions but I did want to > welcome you to the group.  Yes, I am sure that you can both learn something > here and also provide some insight from your own experiences.  So make sure > that you hang around.  You will discover that we can all be both serious > having lots of info to share and we can great sense(s) of humor!  Almost > anything goes. > Hugs, > Sherry > "Janetjc" <jane…@aol.com> wrote in message > news:[email protected]… > > Hi everyone, > > I don’t think I’ve ever posted before, but I do read the board fairly > > regularly.  My name is Janet, and I’m a 41 y.o. mother of three.  I have a > > question regarding prednisone tapering.  A brief (or at least I’ll try to > be > > brief) hisotry.  Back in Sept. ‘99 I started having horrible rashes all > over my > > body accompanied by difficulty breathing.  I was also 7 months pregnant at > the > > time.  The following month, my son was stillborn. Immediately afterwards, > my > > skin problems worsened, my joints became stiff and swollen, and my > breathing > > even more labored.  From that time on, I have been under the care of a > > rhuematologist for "Connective Tissue Disease Syndrome" (I don’t quite fit > any > > of the chapters in the Rhuemie book), and my condition has GREATLY > improved. > > Now to my question.  After being on as much as 50mg of Prednisone a day I > had > > finally gotten down to 5 mg and stayed there for aboutt 6 months.  Back in > > January, my doc told me I really had to start tapering off it again, so he > > dropped me to 4. All was going well until about a month or so ago when I > > noticed I was definitely achier, my skin redder, but even more > disconcerting, > > my mood much darker.  I feel sad all the time–something really not normal > for > > me.  My question is, can just 1mg of prednisone make that much of a > difference? > > and so long after the initial reduction?  Is this maybe the beginning of a > > flare? or just caused by stress (there are a lot of really stressful > things > > going on right now–med/mal lawsuit, divorce, mom’s gravely ill,–bad > year).  I > > haven’t had a chance to talk to my doctor (he’s on vacation), but I am > curious > > if anyone out there has noticed such a fine line between feeling great and > > feeling miserable when taking prednisone. > > Sorry this was so long, but THANK YOU for any insights. > > Janet

Response:

Beverley, I loved your story about Jake!….what a special article and I really think you should ‘write to publish’ in ’spca/animal/people/kids’ magazines…and/or maybe even for vets’ offices to start,  or for school kids who have a fear of the loss of pets or just the fear of death itself….. Anyway it touched me and I am sure it would touch many others…good luck with it and try to pursue it…who knows it may mean monetary gain at some point too! Shelagh    AT valleylu…@telus.net Lupus – Invisible in Plain Sight   AT http://www3.telus.net/valleylupus/index.html "Janetjc" <jane…@aol.com> wrote in message

news:[email protected]… | Hi Janers, | | Thank you for your expression of sympathy–I really appreciate that. | | >what do you mean by " skin redder???"  Can you explain more? | > | | Think sunburned skin but only in certain areas-chest, back, cheeks (face-lol), | and curously my left arm (where it all began).  Then on only the arm, add dry | scaly patches and scabby looking circles and scratches.  Kind of yucky to say | the least so I try to wear long sleeves a lot. | | As for my bones, I’ve had two density checks and while I’m not losing | anymore,I’m also not where I should be (about 1.8 standard deviations below). | I’ve been taking Fosamax since this all began. | | My other meds include Imuran, Plaquenil and Celebrex for the CTD and Synthroid | for hypothyroidism.  Now I’m wondering if I should add an antidepressant or | simply ask to up my prednisone and see if these blues go away. Or do I simply | tough it out and see if my body can get used to the lower dose.  It’s ironic | because in the past I begged and pleaded for my rheumy to cut my meds, and now, | I’m like,"Whoa, stop that, these meds are my friends." | | I am glad that I found this board.  I think I can learn a lot from you all, and | hopefully, I may even be able to add some insights someday. | | Janet in GA

Response:

>I am wondering about the Celebrex. It is a sulpha drug. I can’t take it >because of allergy. Apparently that is common in lupus patients and in >people with other autoimmune diseases. Perhaps Vioxx would be a better >choice for you.

I was on Vioxx about 18 months ago, and it seemed to stop working for me. That’s when my rheumy switched me to the Celebrex.

Response:

Thank you all so much for your kind and welcoming words.  I’m really overwhelmed! >Is there any particular reason >why your doctor is so anxious to get you off the pred completely?

Ever since I started seeing my doc, all I have talked about was getting off my meds and getting back to ‘normal.’  It is a goal that both of us would like to see reached.  In the beginning, we tried to drop my dosages too quickly and were met with disastrous results, so he has been going VERY slowly.  I had been on 5 mg for at least 9 – 12 months.  When he dropped me to 4mg back in January, he estimated that it would take a year to get me completely off  of it.  Now it looks as though I may have to go back up again because I really just feel miserable.  I’m going to ask him if perhaps increasing my plaquenil or imuran doses would help.   All I know is soemthing has to change, for as manically euphoric as I was on the high doses of prednisone early on, that’s how low I feel now.   Janet

Response:

"Shelagh" <valleylu…@telus.net> wrote in message <news:Ao2u8.11639$[email protected]>… > Beverley, > I loved your story about Jake!….what a special article and I really > think you should ‘write to publish’ in ’spca/animal/people/kids’ > magazines…and/or maybe even for vets’ offices to start,  or for school > kids who have a fear of the loss of pets or just the fear of death > itself….

I agree with Shelagh. Jake’s story made me cryyyy. But it could do a fair bit of good published somewhere. Check out a copy of Literary Market Place from your local library and see what magazines or kids’ book publishers might be interested in this sort of story.

Response:

hi! so sorry for your losses. prednisone is a ticky med its great when u are sick, but all the problems that it can cause a real bad stuff. i have fallen 3x in 2 wks i am on 15mg and tapering too. my feet are all swellen up too. i was just told this year that docs leaning tordes lupus but he’s not sure yet. if so he says it is mild case, if this is mild i dont want to know what a bad case is, cuze i feel like sh*t. cathy "Janetjc" <jane…@aol.com> wrote in message

news:[email protected]… – Hide quoted text — Show quoted text -> Hi everyone, > I don’t think I’ve ever posted before, but I do read the board fairly > regularly.  My name is Janet, and I’m a 41 y.o. mother of three.  I have a > question regarding prednisone tapering.  A brief (or at least I’ll try to be > brief) hisotry.  Back in Sept. ‘99 I started having horrible rashes all over my > body accompanied by difficulty breathing.  I was also 7 months pregnant at the > time.  The following month, my son was stillborn. Immediately afterwards, my > skin problems worsened, my joints became stiff and swollen, and my breathing > even more labored.  From that time on, I have been under the care of a > rhuematologist for "Connective Tissue Disease Syndrome" (I don’t quite fit any > of the chapters in the Rhuemie book), and my condition has GREATLY improved. > Now to my question.  After being on as much as 50mg of Prednisone a day I had > finally gotten down to 5 mg and stayed there for aboutt 6 months.  Back in > January, my doc told me I really had to start tapering off it again, so he > dropped me to 4. All was going well until about a month or so ago when I > noticed I was definitely achier, my skin redder, but even more disconcerting, > my mood much darker.  I feel sad all the time–something really not normal for > me.  My question is, can just 1mg of prednisone make that much of a difference? > and so long after the initial reduction?  Is this maybe the beginning of a > flare? or just caused by stress (there are a lot of really stressful things > going on right now–med/mal lawsuit, divorce, mom’s gravely ill,–bad year).  I > haven’t had a chance to talk to my doctor (he’s on vacation), but I am curious > if anyone out there has noticed such a fine line between feeling great and > feeling miserable when taking prednisone. > Sorry this was so long, but THANK YOU for any insights. > Janet

Response:

I can’t help you with meds, I know too little. Actually my medical knowledge would fit in a thimble! I’m so sorry you lost your son. That pain is going to be around for a very long time. (hugs) Bev "Janetjc" <jane…@aol.com> wrote in message

news:[email protected]… – Hide quoted text — Show quoted text -> Hi everyone, > I don’t think I’ve ever posted before, but I do read the board fairly > regularly.  My name is Janet, and I’m a 41 y.o. mother of three.  I have a > question regarding prednisone tapering.  A brief (or at least I’ll try to be > brief) hisotry.  Back in Sept. ‘99 I started having horrible rashes all over my > body accompanied by difficulty breathing.  I was also 7 months pregnant at the > time.  The following month, my son was stillborn. Immediately afterwards, my > skin problems worsened, my joints became stiff and swollen, and my breathing > even more labored.  From that time on, I have been under the care of a > rhuematologist for "Connective Tissue Disease Syndrome" (I don’t quite fit any > of the chapters in the Rhuemie book), and my condition has GREATLY improved. > Now to my question.  After being on as much as 50mg of Prednisone a day I had > finally gotten down to 5 mg and stayed there for aboutt 6 months.  Back in > January, my doc told me I really had to start tapering off it again, so he > dropped me to 4. All was going well until about a month or so ago when I > noticed I was definitely achier, my skin redder, but even more disconcerting, > my mood much darker.  I feel sad all the time–something really not normal for > me.  My question is, can just 1mg of prednisone make that much of a difference? > and so long after the initial reduction?  Is this maybe the beginning of a > flare? or just caused by stress (there are a lot of really stressful things > going on right now–med/mal lawsuit, divorce, mom’s gravely ill,–bad year).  I > haven’t had a chance to talk to my doctor (he’s on vacation), but I am curious > if anyone out there has noticed such a fine line between feeling great and > feeling miserable when taking prednisone. > Sorry this was so long, but THANK YOU for any insights. > Janet

Response:

>I’m so sorry you lost your son. That pain is going to be around for a very >long time.

Thanks Bev.  It’s definitely an ebb and flow kind of thing.  Some days are fine and others…not so good.

Response:

I lost a child at almost 8 months – he’d be in college now – and I still mourn on the day it happened. Fortunately, I have two wonderful healthy children, and two from the MOTH who are as close as blood. "Beverley" <pottings…@sybercom.net> wrote in message

news:[email protected]… – Hide quoted text — Show quoted text -> I can’t help you with meds, I know too little. Actually my medical knowledge > would fit in a thimble! > I’m so sorry you lost your son. That pain is going to be around for a very > long time. > (hugs) > Bev > "Janetjc" <jane…@aol.com> wrote in message > news:[email protected]… > > Hi everyone, > > I don’t think I’ve ever posted before, but I do read the board fairly > > regularly.  My name is Janet, and I’m a 41 y.o. mother of three.  I have a > > question regarding prednisone tapering.  A brief (or at least I’ll try to > be > > brief) hisotry.  Back in Sept. ‘99 I started having horrible rashes all > over my > > body accompanied by difficulty breathing.  I was also 7 months pregnant at > the > > time.  The following month, my son was stillborn. Immediately afterwards, > my > > skin problems worsened, my joints became stiff and swollen, and my > breathing > > even more labored.  From that time on, I have been under the care of a > > rhuematologist for "Connective Tissue Disease Syndrome" (I don’t quite fit > any > > of the chapters in the Rhuemie book), and my condition has GREATLY > improved. > > Now to my question.  After being on as much as 50mg of Prednisone a day I > had > > finally gotten down to 5 mg and stayed there for aboutt 6 months. Back in > > January, my doc told me I really had to start tapering off it again, so he > > dropped me to 4. All was going well until about a month or so ago when I > > noticed I was definitely achier, my skin redder, but even more > disconcerting, > > my mood much darker.  I feel sad all the time–something really not normal > for > > me.  My question is, can just 1mg of prednisone make that much of a > difference? > > and so long after the initial reduction?  Is this maybe the beginning of a > > flare? or just caused by stress (there are a lot of really stressful > things > > going on right now–med/mal lawsuit, divorce, mom’s gravely ill,–bad > year).  I > > haven’t had a chance to talk to my doctor (he’s on vacation), but I am > curious > > if anyone out there has noticed such a fine line between feeling great and > > feeling miserable when taking prednisone. > > Sorry this was so long, but THANK YOU for any insights. > > Janet

Response:

"Janetjc" <jane…@aol.com> wrote in message

news:[email protected]… > >I’m so sorry you lost your son. That pain is going to be around for a very > >long time. > Thanks Bev.  It’s definitely an ebb and flow kind of thing.  Some days are fine > and others…not so good.

It eases up after a while, but you never forget.

Response:

Janet wrote: > Think sunburned skin but only in certain areas-chest, back, cheeks (face-lol), > and curously my left arm (where it all began).  Then on only the arm, add dry > scaly patches and scabby looking circles and scratches.  Kind of yucky to say > the least so I try to wear long sleeves a lot.

Your description makes me think of sun exposure to these parts. Especially the left arm being worse because it is more exposed when a person drives a car. Do you avoid the sun as much as possible, wear good sunblock, high SPF long sleeves? Just a thought… — Nancy  F <nfarrel…@munge.att.net>

Response:

On 13 Apr 2002 16:36:14 GMT, jane…@aol.com (Janetjc)  wrote: >haven’t had a chance to talk to my doctor (he’s on vacation), but I am curious >if anyone out there has noticed such a fine line between feeling great and >feeling miserable when taking prednisone.

Absolutely.  I’ve got friends on 3 mgs who can’t get down to 2.5 (and other similar numbers).  a lot of times tapering has to be done every other day.  so you’d take your normal dose one day, the next take the slighly lower dose, then go back for one day to normal and so on – until you can go more days at the lower dose.   *********************************** KCat – I am not a medical professional.  The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq30.htm   ("`-”-/").___..–”"`-._   (`6_ 6  )   `-.  (     ).`-.__.’`)    (_Y_.)’  ._   )  `._ `. “-..-”   _..`–’_..-_/  /–’_.’ ,’ (()),-”  (()),’    (((.-’

Response:

I was told that the drugs Celebrex and Vioxx should be avoided for lupus patients….there was a big article out (reuters) about it and warning the docs to keep their sle patients off it….do you know about that? — Shelagh  AT    valleylu…@telus.net Lupus – Invisible in Plain Sight   AT http://www3.telus.net/valleylupus/index.html "BJ" <B…@sk.nojunk.ca> wrote in message

news:[email protected]… – Hide quoted text — Show quoted text -> Hi again Janet, > I am wondering about the Celebrex. It is a sulpha drug. I can’t take it > because of allergy. Apparently that is common in lupus patients and in > people with other autoimmune diseases. Perhaps Vioxx would be a better > choice for you. > BJ-Saskatchewan > "Janetjc" <jane…@aol.com> wrote in message > news:[email protected]… > > Hi Janers, > > Thank you for your expression of sympathy–I really appreciate that. > > >what do you mean by " skin redder???"  Can you explain more? > > Think sunburned skin but only in certain areas-chest, back, cheeks > (face-lol), > > and curously my left arm (where it all began).  Then on only the arm, add > dry > > scaly patches and scabby looking circles and scratches.  Kind of yucky to > say > > the least so I try to wear long sleeves a lot. > > As for my bones, I’ve had two density checks and while I’m not losing > > anymore,I’m also not where I should be (about 1.8 standard deviations > below). > > I’ve been taking Fosamax since this all began. > > My other meds include Imuran, Plaquenil and Celebrex for the CTD and > Synthroid > > for hypothyroidism.  Now I’m wondering if I should add an antidepressant > or > > simply ask to up my prednisone and see if these blues go away. Or do I > simply > > tough it out and see if my body can get used to the lower dose. It’s > ironic > > because in the past I begged and pleaded for my rheumy to cut my meds, and > now, > > I’m like,"Whoa, stop that, these meds are my friends." > > I am glad that I found this board.  I think I can learn a lot from you > all, and > > hopefully, I may even be able to add some insights someday. > > Janet in GA

Response:

I was told by my doc that Vioxx was not good for lupus patients because if you have any organ involvement it will cause them to bleed. My sister found out the hard way, she has kidney involvement and one of her docs put her on Vioxx and her kidneys bled pretty badly. Thankfully it stopped shortly after she quit taking it. Paula from AL – Hide quoted text — Show quoted text -> From: "Shelagh" <valleylu…@telus.net> > Organization: Valley Lupus Support > Newsgroups: alt.support.lupus > Date: Tue, 23 Apr 2002 19:02:35 GMT > Subject: Re: Question about prednisone, tapering, and depression > I was told that the drugs Celebrex and Vioxx should be avoided for lupus > patients….there was a big article out (reuters) about it and warning > the docs to keep their sle patients off it….do you know about that?

Response:

Yes I have read something like that relative to both Vioxx and Celebrex and something else I wonder about is the question of ’sulfa’ being part of both celebrex and chloroquin?….haven’t been able to get an answer online yet…will keep on trying- Does anyone else know about that? — Shelagh  AT    valleylu…@telus.net Lupus – Invisible in Plain Sight   AT http://www3.telus.net/valleylupus/index.html "Paula Love" <paulalo…@comcast.net> wrote in message

news:B8EB1E4E.7D25%[email protected]… – Hide quoted text — Show quoted text -> I was told by my doc that Vioxx was not good for lupus patients because if > you have any organ involvement it will cause them to bleed. My sister found > out the hard way, she has kidney involvement and one of her docs put her on > Vioxx and her kidneys bled pretty badly. Thankfully it stopped shortly after > she quit taking it. > Paula from AL > > From: "Shelagh" <valleylu…@telus.net> > > Organization: Valley Lupus Support > > Newsgroups: alt.support.lupus > > Date: Tue, 23 Apr 2002 19:02:35 GMT > > Subject: Re: Question about prednisone, tapering, and depression > > I was told that the drugs Celebrex and Vioxx should be avoided for lupus > > patients….there was a big article out (reuters) about it and warning > > the docs to keep their sle patients off it….do you know about that?

Response:

Site Map   Your Account   Support   About Us Offerings:  Medscape.com   Charts   Mobile   Logician   Medscape Health CELEBREX ORAL Pharmacology & Chemistry Chemistry and Stability from AHFS DIT Chemistry Celecoxib, a diaryl substituted pyrazole derivative containing a sulfonamide substituent, is a nonsteroidal anti-inflammatory agent (NSAIA). Celecoxib is a selective inhibitor of cyclooxygenase-2 (COX-2) and is structurally and pharmacologically related to rofecoxib. Because the goal of selective inhibitors of COX-2 is to inhibit COX-2 but not COX-1, the drugs also have been referred to as COX-1-sparing NSAIAs. Celecoxib differs chemically and, to some extent, pharmacologically from prototypical NSAIAs, which inhibit cyclooxygenase-1 (COX-1) and -2 (COX-2). Celecoxib consists of a central pyrazole ring, 2 substituted aromatic rings, and a benzenesulfonamide attached to one of the rings. Spatial orientation of the 2 aromatic rings relative to the central ring is important for cyclooxygenase inhibitory activity; the 2 aromatic rings must reside at adjacent positions on the central ring for COX-2 activity. Unlike most prototypical NSAIAs, celecoxib does not contain a carboxylate group; it has been postulated that absence of such a group may contribute to the drug’s high COX-2 selectivity. Although the overall structures of COX-1 and COX-2 are similar, a principal difference between the 2 isoforms of cyclooxygenase is the presence of a much larger NSAIA binding site on COX-2 compared with the NSAIA binding site on COX-1. The larger binding site on COX-2 results from the substitution of valine for isoleucine at position 523 in COX-2. It has been postulated that the smaller valine molecule, unlike the larger isoleucine molecule in COX-1, gives access to a side pocket that may be the binding site for many selective COX-2 inhibitors, including celecoxib. It appears that the benzenesulfonamide moiety of celecoxib binds to the side pocket, although diaryl heterocyclic compounds, including celecoxib, may have multiple modes of binding to cyclooxygenases. Celecoxib occurs as an odorless, white to off-white crystalline powder. The aqueous solubility of celecoxib at a pH less than 9 is about 5

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