Have any of you .......

Discussion in 'Healthful Living / Natural Treatments' started by timer lady, Apr 5, 2008.

  1. timer lady

    timer lady Queen of Hearts

    As many of you know, I've been on a long term treatment of prednisone. It's been a rough almost 10 months.

    The Mayo docs are titrating me down very slowly as the last time we tried to lower the prednisone dose my body didn't tolerate it - just got sicker.

    I'm finding this time to be challenging as well. While I have some good days, the bad days are worse than ever. The pain & agitation are extreme, blood pressure shoots up along with pretty severe edema.

    I guess my question is have any of you been on a long term treatment of steroids & how did you tolerate coming off of them? What was a successful method for you?

    I've been told that my body needs to be fooled into believing it doesn't need this medication anymore so we can introduce a non-steroidal anti auto-immune medication.

    Looking for any suggestions - looking really for a positive outcome. Let's just say this isn't fun. :wornout::grounch_day:
  2. dreamer

    dreamer New Member

    I have now been on pred 2 years. It DID give me back a life, becuz before the pred, I could not use hands, feet, arms or legs AT ALL, and sometimes my illness affected my rib cartilage and my hyoid cartilage (and then I could not swallow)
    BUT the pred has recently given me---high blood pressure, high triglycerides, and diabetes. (and one of my other medications has harmed my liver- my other RA/Lupus medication) Caused liver damage and fatty liver.

    I have been trying for a few months to reduce the pred, but I am haveing ZERO louck, as soon as it is reduced even the slightest amount, my old symptoms seem to be lurking and jumping in to say AHA! So, it is a struggle, and there is this fine line of haveing to choose which I will better be able to live with for ME.

    Marg and I are both working very hard with these new very serious health issues----we have a thread going here where we have been discussing some dietary changes to help us. I also posted about a book I recently picked up that discusses various foods and food products and how they affect the body. (and how they work for or against certain symptoms etc) THis is in addition to several other books I got recently to help me cope with the pred induced diabetes.
    I did think it might be helpful info for many here, becuz seroquel caused my difficult children blood sugar to go beserk....and she also looks like she is starting up with some type of auto immune something, as well.....and her blood pressure has always been high (bad genetics and the anxiety issues) And my difficult child is not one who can tolerate going to doctor even just for a throat swab/culture. She very literally would rather die. UG!

    Maybe you might like to join Marg and I.we are working VERY hard and I am afraid she is much more knowledgeable than I am about the dietary things, but I am learning. ANd of course both Marg and I do also have mobility issues that make us have to be more creative.

    Go take a peek at our thread- I think Marg started it, I think the subject line is something like "extreme diet continues" Maybe we can grab ahold of your hand and you can grab hold of ours (VERY gently, tho, please, my fingers now look like gnarled branches) and maybe we can do our best to be doing this with each others help?

    I am sory you are haveing to cope with this- I know first hand how hard it all can be. I really hate what my auto immune illness has done to my life most of the time, BUT somehow, I have also found little bits and peices to it that I do have to give it credit for. (If I had not almost died and been SO ill for so long, I would no doubt be working away from the house very very long hours, like I used to becuz we were low income BEFORE I got so sick, and we depended on MY income to support us all) BUT being home with my husband and my kids has helped them and their challenges enormously. AND it has permitted me to homeschool them AND to strengthen our parent child bonds in ways I never ever dreamed possible. ANd I personally do believe it has made all of my kids far more compassionate and careing people.

    Come hold our hand, see if any of what we are doing is any help- or maybe come bring us MORE ideas!
    Good luck!
  3. Big Bad Kitty

    Big Bad Kitty lolcat

    My mother was on Prednisone for a little over 2 years (she has MS, fibromyalgia, CFS, and migraines) and she did manage to eventually get off of the steroids.

    While she felt she had gotten her life back, she was also suffering from fatty liver, as well as serious weight gain (mostly bloating, her face looked like a balloon) and her bones were beginning to brittle.

    I don't know the similarities between my mom's health issues and yours, but I know they are in the same auto immune category. She titrated off the prednisone SOOO slowly, the doctors made fun of her. Not in a mean way, but kind of picking on her. Well, guess what. She did it without getting sick.

    This was over 10 years ago. At this point, she does not take prednisone at all anymore, but she takes Decadron, in a different manner. Once a month, she takes it for a few days. She has even used what pills she has for those few days and fiddled with them by taking half the dose for more days, to see how that works. She finally has a combination that works well for her. So now, she knows that in any given month, she knows that she can count on having one GOOD week. She plans when she takes her "megapills" as she calls them around family events, holidays, and the like.

    I hope that this helps you some. Fell free at any time to ask me about what my mom went through; I of course gave you the abridged version.
  4. dreamer

    dreamer New Member

    Yes, my doctor gave me 1 mg 2 mg and 5 mg pills so I could wean very slow, now, too. Altho I can tell if I take even 1 mg less than usual...so I take diff doses diff days so I can wean, but I also have permission to add back on in a bad flare. (with set dose limits) BECUZ it will take less overall if I do not let anything get too out of control.
    I use a weekly pill minder to keep track of what days I take how much, and I am gently working on weaning down. I am hoping dietary changes might also help with some of what the auto immune disease causes. Of course it is too soon to tell much, but I am noticeing certain foods that DO make the illness worse (so I can avoid those) , and I am experimenting with foods that seem to make it a little better. I forgot- my vision was also seriously affected - mostl likely mostly from the blood sugar- but, already I am actually SEEING a huge improvement with THAT (carrrots every day altho they spike blood sugar some, and blueberries, just a few cuz again, sugar.....and oat, becuz it helps and cinnamin, both help keep blood sugar lower and I am steering more away from wheat, especially more concentrated forms, altho wheat IS a good fiber, seems it irritates my auto immune illness....and possibly dairy, especially hard for me cuz I LOVE dairy)

    So- I am working with a combination of methods to work on weaning off steroids.
    BUT -in all honesty, I knew before I began steroids just what the risks were, and at the time, I accepted the risks even gladly, becuz.....I had zero life, except for just breathing, much of the time. I have made so sure to remember every single day just what a gift this has been- even if it is now "payback time" Every time I brush my own teeth, or comb my own hair, (what little is left, LOL- another medication made that thin a LOT)- everytime I wake up and can step on the floor of my own accord. My kids call the pred the magic medication. I do remind them it does come with a big price tag, and I remind myself, too.

    Oh yeah, and yeah I have a moon face, too, now....and the hump at top of my back just below neck between my shoulders......I have not had bone density tested but I do take calcium and Vit D daily....

    Oh and I also gained- 40 pounds, which I really in no way needed, I was soft before.....yeesh. The other thing was my skin. it got thinner and much more fragile.....almost like onion skin? an it got drier. I have always had very oily skin, but now it cracks. I cannot remember if this is from illness or pred or maybe both, but, the fat layer directly under my skin (especially noticeable on my hands) also thinned out considerably.
  5. flutterbee

    flutterbee Guest

    Steroids take over the bodies production of cortisol. So, when you stop taking steroids your body has to realize it has to start making it again. I can only imagine how you are feeling because when I was recently on steroids for less than 2 weeks and stopped before I finished the taper, I was incredibly sick for a week.


    How slowly are you coming off? I read one blog where a woman went down 1mg per week.
  6. flutterbee

    flutterbee Guest

    Those are symptoms of Cushing's syndrome which can be an effect of long term steroid use. High blood sugar is also linked with Cushing's. You need to talk to your doctor about this.

    Info on Cushing's

  7. dreamer

    dreamer New Member

    Yeah, it is cushings.
    My GP is apparently not speaking to me, and my rheumy has an appointment with me soon.....has been seeing me pretty often under current circumstances.
    I tried to go down by 1 mg a week, it was still too much too fast.....currently we are trying reducing by 1 mg every other day for a week, then going to the 1 mg less daily for a week or 2 and then drop another 1 mg every other day, etc......but, it is still too much for my dumb body. so now instead of doing every change and reduction etc for one week, we do each for 2 weeks. BUT I have already reduced the pred by approx 25% overall.
    Yes when you take pred, your adrenals back off on their job, and if you go off the pred too fast, the adrenals need to begin doing their job again.
    and yeah- messed with my monthlies, too.
  8. KTMom91

    KTMom91 Well-Known Member

    I was on pred for about 9 months, for out of control asthma I didn't realize I had, put on 75 pounds and have yet to take it off. That was about 7 years ago. When I complained loudly to an urgent care doctor that wanted me to take it yet again, she told me it slows your metabolism...I told her to find me something else that wouldn't make me any heavier. She did, and it worked, but now I don't remember what it was. Since we don't have insurance, our local urgent care has been my only source of medical care lately.
  9. timer lady

    timer lady Queen of Hearts

    I found at Mayo that I do have Cushings as well. The rheumatologist just stated that the steroids are killing me. dreamer, I know those symptoms, the upper back/neck thing, dry skin, high blood sugar, edema, pain, weight gain, unable to move yada yada yada......

    On the other side, I didn't think the prednisone was doing much until I tried going off it. It really has done wonders controlling the head pain along with a few other things.

    I'll check into the extreme diet you & Marg are researching. It will take a while as my reading/vision is being affected by something - Susac's, prednisone, brain lesions??? Who knows right now.

    We just need to get this old body to a higher level of functionality or tell me what new life skills I need to use to survive. I need direction, a plan. I'm big on plans.....I'm good at them.

    Thanks for listening ladies.....any ideas are welcome. BBK, I may be in contact via PM regarding your mom's journey of steroids.

  10. dreamer

    dreamer New Member

    a sad reality is that it is not uncommon that a treatment for something can cause death. SOmetimes well before the illness itself. I knew before starting the pred, the risk involved, the possible consequences. We must always balance the pros and cons and we must each for ourself decide what risks we are willing to accept. My husband has long ago decided he did not accept the risks of treatment for his cancers etc....and he flat out refused treatment, becuz he did not like what he saw happen to others. I made sure he understood the ramifications of his choice, and once I knew he undesstood, I acepted his decision. I made it clear to my family from the start, the pred could in the future create some doozies of difficulties. BUT at the time I began the pred, I had no quality of life at all. I lived on edge of suicide daily, due to extreme unbelievable pain that morphine did not even take the edge off. Days went by hwere my kids lived hearing primal screams over which I had no conscious control. I was at the mercy of my ill husband and my children to meet my needs, oh yes, I wanted to go to a nurseing home, a facility, BUT ---that was not an option, no funding......etc etc. and my children were young and my daughter was in the depths of her own major difficulties and my son was SO little, and my family often could not even bear to see me, so they stayed as far away from me as they could sometimes.
    SO while the prednisone is killing me......my illness had already done so and these 2 years I have had since? They are truly an amazing and incredible gift. That pred kicked butt of my illness and kept my symptoms at bay, and did a great job. BUT had my symptom pre pred not been as intense as they were? I do not knowww if I would have accepted the risks. ANd I cannot go back now and try to 2nd guess. How far I have brought my children in this last 2 years has been unbelievable. My son can now read and write. My difficult child is now starting her 3rd week of a <gasp> JOB! 2 years ago I never would have dreamed any of this could be possible at all. But, now it is payback time for me for this gift.

    I used to be angry my previous docs did not Rx pred for me years ago, when I was first so ill so that I would not have gotten as ill as I became. These days Ino w have settled in to the idea that it just was not how it was supposed to be. I have now seen that me and my kids have learned some amazing things by how it all did play out. I would not wish those lessons on anyone, but, in hard truth, those lessons have already served my children well when they sit beside a friend of theirs who has an ill parent etc.
    Will the side effects and results of pred actually finish the job and kill me? Or will I get hit by a car? I do not know. I try not to worry about it. I try to stay too busy enjoying each day. I almost did not have these days to enjoy them. My illness and the results of it have dramatically altered how I view my difficult children symptoms, my dhs symptoms and my sons issues. I see everything differently than I used to.
    For all practical purposes I was dead before the pred. Anything I can do now is a blessing.
  11. Nomad

    Nomad Guest

    I think you have already said it...
    Going off super duper slowly...I can't stress the s.l.o.w. part enough.
    Taking other medications to deal with any possible pain issues. Naproxen comes to mind.
    Drink lots of water...take a diuretic if you are able...even a low dose one.
  12. mom_in_training

    mom_in_training New Member

    Hi Linda. My difficult child recently had her thyroid completely removed due to a 9 CM mass. Prior to her surgery I had stumbled opon medhelp during my research and found that it was very helpful. I want to share a couple links for you to check out if you choose. You had mentioned autoimune and throughout all of my reading from posts that other patients have posted (been there done that) I have seen time and time again that many even in the Thyroid forum mention that they have a problem with autoimune. They do have a forum dedicated to this. I am so sorry that you are having to deal with this.

    Autoimune Link: http://www.medhelp.org/forums/show/174

    Also here is a link to a thyroid group. I have seen many here also have been diagnosed as being Autoimune.


    Some posts that I found about cushings:

  13. timer lady

    timer lady Queen of Hearts

    Thank you all....I appreciate your responses. mom in training, I'll be checking out those links.

    I have a feeling the prednisone is just going to be a nasty medication for me to discontinue. I also know that the doctors do not want to try anything else or hazard a treatment plan until this prednisone is down by at least half of what I'm taking now.

    I don't want to wait too long.

    I'm hoping to hear other options when I head back to Mayo Clinic this coming Thursday. Postive options.....options that say I will be back on the golf course by Mother's Day :hypnosis::rofl: okay, I'm out of control. But I'm also bored out of my mind :grey:. I need to get out of this house.

    I need husband to go into an office & work & not work from home. I'm not sure our almost 20 years of marriage can survive me being in the house 24/7 with him. It's his turn to GO to an office & work. How cushy to get a job right away that allows him to work in his office!

    Okay, I'm off on another tangent - I may need to take my medications & try to get some sleep. Another night with-o sleep. Tried to nap yesterday & only caught a couple of hours of sleep. I think I'm running on empty.

    My mind is racing & I'm simply exhausted. I'm sure it's the prednisone & the change in the dose.

    Reserve my quiet room in the nearest mental health facility ladies ! :bloodshot::rofl::stopglass: