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    Old 01-01-2005, 05:06 PM   #1
    liz14
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    Unhappy recently diagnosed, & scared. also have a question about medication

    hi everyone!
    i was just diagnosed with lupus in october and here's my story.
    i was sent to the hospital for surgery back in october of this year because i had a twist in my intestine... after my surgery i became really sick... and after a biopsy and some blood tests, i found out i had stage 2 SLE. although before i found out i had lupus i had no lupus symptoms.. so i'm not sure if the symptons of a flare and lupus start to show up later? or maybe i just have a really mild case of lupus that won't affect me much? i'm just so confused.
    currently i'm taking prednisone, and plaquinel... 40 mg of prednisone and let me tell you, i've gotten all the bad side effects everything from the weight gain, extremely puffy face, stretch marks (lots) thinning of the skin, fat pads on the back etc etc. has anyone else taken prednisone and experienced the same side effects? if so, do they start to go down when the doses are reduced? does this sound like a normal moon face to you... my description of what i have right now is a reallly round face with a big double chin.. also very puffy neck and the collar bone and shoulder area is quite puffy. as far as i know i will be taking prednisone for long term.. possibly years, but my dose will be tapered down, but when will i see a difference in the side effects? especially the moon face because that is what bothers me most right now. also, for those of you who were on prednisone, how long were you on it for and how do they know for sure when they can take you off of the medication and possibly put you on something else to control the disease? i'm also on plaquinel, and altace (blood pressure medication because apparently the prednisone has given me high blood pressure =(
    thank you,

    -liz

    Last edited by liz14; 01-02-2005 at 04:55 PM.

     
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    Old 01-01-2005, 06:39 PM   #2
    goldenwings
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    Re: recently diagnosed, & confused also have a question about medicaiton

    Hiya Liz,

    Firstly, may I say that anything that I discuss here comes only from my own experience of having lupus for over 30 years, and also my own views of medications.

    When you first start to take prednisone or any steroid you will experience the "moon" face which over time, when your dosage is sorted and perhaps a maintenance dose is reached, the fullness of your face will disappear - honestly it will. Weight gain is usual too, but again when the medication is sorted your weight will sort itself out too.

    Weight gain can also be caused because of inactivity. You are in pain and are so fatigued that it does hurt to be as active and mobile as you once were. Thinning of the skin though usually occurs when you have been on steroids for quite a while, so you do need to speak to your rheumatologist about that. The lower the dose of steroids, the less weight you will gain and your "moon" face will go - again I am being honest about this, because I do so understand how you feel about that part of it. It is always preferable to take a lower dose, so that if you do have a bad flare, there is much more benefit to increasing them even for a short period of time.

    You ask about the length of time patients can be on steroids. I personally have been on them for over 30 years. I was so desperately ill at the time and my parents had to make a decision about what was best for me as I was very young. There just wasn't the choice of medications then compared to now. In my case the steroids saved my life, and I will be on them for the rest of my life. I was on massive amounts initially, and over the years have managed my own drug intake and have reached my personal maintenance level.

    Now thought here are so many other wonderful drugs to help with lupus, that I'm sure the right ones will be found for you. I also have other serious medical problems, so I am on a rather weird and wonderful range of drugs because of these.

    Nobody but the rheumatologist can answer the questions about how they can be sure when to take you off your present medication, and put you on something else. It is something that you will have to ask of them.

    As I said Liz, this advice comes only my own experience. If you think I might be of any further help, let me know. In the meantime, I hope you begin to do better.

    Just to say this board is really the place to come, everybody is so helpful and because we all know what each other is going through, you feel you can ask anything and somebody will always try to come through with an answer.

    goldenwings

    Last edited by goldenwings; 01-02-2005 at 06:20 AM. Reason: duplicated wording

     
    Old 01-02-2005, 06:06 AM   #3
    jrf5460
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    Re: recently diagnosed, & confused also have a question about medicaiton

    Hey liz...

    You too!!!!

    I have been on prednisone since March (no less than 40 mg/day). I have the double chin, fat pads around my neck and collar bones and the other things you described. I can't take Plaquenil because of some eye problems, but do take Enbrel. Haven't seen great results so far, but Enbrel can take several months to work.

    I guess we'll hang in there together! My New Year's resolution is to lose some of the weight gain (20+lbs) gained on pred. Good luck to you and let me know how you're doing.

    Take care,
    Joe

     
    Old 01-02-2005, 12:55 PM   #4
    Ali04
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    Re: recently diagnosed, & confused also have a question about medicaiton

    i have been on prednisone now since last april.

    i have tapered down to 10mg which is supposed to be my maintenance dose.

    i, unlike you, did not get any ill side effects. my guess is that if you are getting all those side effects and your doc still wants to medicate you, he will try something else. maybe cellcept?

    good luck. hopefully once its tapered, the side effects will diminish.

    love,
    ali

     
    Old 01-02-2005, 04:54 PM   #5
    liz14
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    Re: recently diagnosed, & confused also have a question about medicaiton

    hi golden wings!

    thanks for responding to my post! wow you've had lupus for over 30 years? that's a really long time... but how has it affected your life? and what kind of symptoms do you experience? since i was just recently diagnosed i'm still kind of scared about my future.. another thing that astonishes me is that you said you've been on prednisone for over 30 years.. that is a long time to be on steriods considering the awful long term side effects...did you experience most of the side effects though? cause i certainly am..which really doesn't make me happy cause i'm not sure how long they'll be there and which ones will disappear. did my description of the moon face sound correct to you? with the whole double chin thing, big puffy neck and collar bone area? you said that'll disappear though so that's good news! thing is, i've asked some people who have been on prednisone and they said their moon face didn't go away until they were off the medication, but how low was your dose when you started to see the moon face come down then completely disappear? and how long were you on that dose before you saw a difference? if you remember. when the dose is lowered, you said the weight gain will sort itself out. do you mean that the weight will decrease on it's on? also, i got the whole "redistrubution of fat" symptom where right now i kind of have a big hump on my back caused by fat, so i can't even see my shoulder blades, and also lots of the fat is distributed to my stomach.. have you experienced this too? and if so, when you get to a lower dose, do those fat pads go away? did you also get stretch marks? or straie as some call them because i've got some really big nasty ones. another issue.. thinning of the skin, it's hard to tell with my skin right now because i did just get out of the hospital couple months ago.. and i was really sick and since then my skin has already been really dry and not so nice, but normally i have really nice skin. so how do you tell if your skin is getting thinner? does it feel and look different? since you've been on prednisone for so long have you ever had a problem with osteo?! oh and by the way do you have any organ involvement with your lupus? ahh, and one more question, what is your maintenance dose right now?!
    sorry for bombarding you with all these questions, i'm so new with the disease and medication, and sometimes it's so much easier to learn about it from someone who is also experiencing the same thing. thank you so much, hopefully you can answer most of them =)


    Hi Joe,
    yes we really do need to hang in there together! the side effects are dreadful! were you just diagnosed with lupus in march then started off with prednisone? how has your experience with lupus been? cause i've heard so many stories of how lupus has affected some people's lives and sometimes it's kind of scary, like with the fatigue and just not being able to do many things. wow you've gained 20+ pounds? that sucks... do you notice a particular place where you've gained that weight or is it just pretty much every where? cause i've gained 4 pounds so far, but most of the fat just went to my back and stomach area. well hang in there! we'll get through this together and hopefully the moon face does go down cause it's awful!

    and finally, ali,
    hey there! prednisone since last april with no side effects at all?! you are soo unbelievably lucky! i'm really hopeing the docter will be able to find something else for me to take because the side effects aren't getting any better.. especially cause i started at 75mg a day. does cellcept help with lupus that has organ involvement though? because i have kidney involvement with my lupus. and could you also tell me a little bit about how lupus has affected your life and what changes in lifestyle and such you had to do?

    a big thank you to all of you!
    love,
    liz

     
    Old 01-02-2005, 06:19 PM   #6
    goldenwings
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    Re: recently diagnosed, & confused also have a question about medicaiton

    Hiya liz,

    I will try to answer your queries as best I can. The other thing I want you to understand is that I have other serious medical problems, which unfortunately have overlapped with the lupus and therefore have made things more difficult.

    As I have said before this is my own personal experience of lupus and how it has affected my life. I cannot speak about how other lupus patients are affected.

    How you feel depends on the symptoms you have. For instance, if you have organ involvement then you are obviously going to be more ill than if you haven't. Not everybody has organ problems, thank goodness. Some people have brain involvement, again not everybody. I wouldn't try to guess how you yourself will be in relation to symptoms because I don't know your history at all prior to diagnosis or anything plus I'm not a doctor. Your rheumatologist can tell you more regarding this.

    You mention the long time I have been on steroids, as does everyone. When I started to take them they were the only thing that saved my life. I was on massive amounts initially, and over the many years have regulated my own dosage in terms of how I feel. I try to keep it at between 6 - 10 mg per day so that when I am unwell I can go a lot higher if necessary, until I feel better then I go back to my maintenance dose.

    One thing about the weight around the upper part of your body, and please don't take this the wrong way, perhaps it is so much more noticeable to you because if you have been quite a bit thinner in this area, which if course is the first thing you see when you look in the mirror, then it is going to seem so much bigger. None of my weight gain was in one or two particular places, it was generally evenly over my body.

    I honestly wish I could let you see a picture of me. I am still on steroids, but I have definitely not got a moon face. It is like other medications in that once the correct dosage is worked out for you, then things will settle down.

    Stretch marks can happen with gaining weight and then losing it, and in most cases it has nothing to do with steroids. Thinning of the skin doesn't usually happen after such a short time of being on steroids. This is why I suggested you speak to your doctor about it.

    My doctors did a "oh dear me, you should have been on bone tablets years ago". So I have only been on them for a couple of years. Having said that I have had a very bad spine for years, but as I have other serious medical problems as well as lupus I can't really put that down to steroids.

    I have APS and some brain involvement. I get very bad headaches too. Migraine is recognised as a symptom of lupus now also. I personally have other symptoms.

    I know you asked for help and advice, and I have done my best to do as you asked of me. Please remember,These are things that happened to me and are not necessarily things that happen to everyone with lupus

    I must go now as I am absolutely exhausted. It has taken so long to type this. I hope that I have done it in a way that is not going to be worrying for you.

    Get in touch again if I can help further

    Regards

    goldenwings

    Last edited by goldenwings; 01-02-2005 at 06:27 PM. Reason: doubling up of wording

     
    Old 01-03-2005, 07:19 AM   #7
    jrf5460
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    Re: recently diagnosed, & confused also have a question about medicaiton

    Hey Liz...

    No I was not diagnosed in March with Lupus. I was in the hospital for Optic Neuritis and on 3 days of IV steroids. I went through a Multiple Sclerosis scare. Still have a 50% chance of coming down with MS over the next five years. Not a happy thought!

    Eventually I was diagnosed with Mixed Connective Tissue Disease with Central Nervous System involvelment. Then I was diagnosed with Adult Onset Still's Disease (a form of Rheumatoid Arthritis). All of these have overlapping symptoms like Tranverse Myletis, Ankylosing Spondylitis, Pseudo Tumor Cerebri, etc., etc. The list is long and distinquished!!!! I also have an auto-immune liver disease called Primary Biliary Cirrhosis.

    My symptoms daily are joint pain, extreme fatique, dizziness, blurred vision and right upper quadrant pain. I take 9 prescriptions to help ease the symptoms, but none seem to really work.

    To answer your question about my weight gain. Like I said earlier, I have the double chin, and the fats deposits around my neck, but my weight gain is mainly in my waist. Probably gained as much as two inches around the waist. Now, that's my experience, hopefully not yours. New Year's Resolution is to quit the in between meal snacks, no deserts (I have an extreme sweet tooth!!!) and exercise. These past couple of months have been difficult because of the pain in the joints I'm not as active as I should have been. That plus the high dose of steroids...well the weight just snuck up on me!!!

    Started a light exercise program and a diet. Goal is to lose 10 pounds this month alone. Have liver doctor appt. on Jan 31. Want to drop 10 punds by that date!!! Hopefully I will be able to discuss some additional meds that will allow me to taper off the steroids and eventually ween myself off them completely!!! That's the goal anyway.

    This got longer than I anticipated, so I'll end by saying write soon and hope things go well for you.

    Take care,
    Joe

     
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