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pats2 
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Joined: 23 April 2006
Location: Canada
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 Topic: almost made it off Pred
Posted: 23 June 2006 at 4:04pm |
 Hi all, i posted in April asking for help if anyone had gotten off of prednisone, unfortunatly I guess no one here has. This is my story of woe.
I HAVE BEEN ON PRED FOR ALMOST 5 YRS THE LAST 3 AT 10MG LOW DOSE i THOUGHT UNTIL MY EYES WENT WONKY, CATARACT IN RIGHT EYE, DOUBLE VISION, AND WANDERING EYES. i UNDERSTAND NOW WHY THE CUP FELL OFF THE CONTER ALL THE TIME. i HAVE NEW DR. WHO IS TAKING ME OFF THE PRED AT 2.5 EVERY 2 WEEKS, OR UNTIL THE PAIN GETS SO BAD i HAVE TO GO SEE HER. i AM NOW DOWN TO 5MG AND i AM SICK, NAUSEATED ALL THE TIME AND THROWING UP AT LEAST TWICE A DAY. NO APPITITE BUT NEVER HAD ONE ANYWAY. WHEN i SEEN HER SHE SAID GO LOWER THAT MY JOINTS WERE NOT SWELLING YET. sO BEING A GOOD GIRL i DID AS SHE SAID BUT i DID COMPLAIN TO HER THAT i NEED SOMETHING TO REPLACE WHAT SHE WAS TAKING AWAY. NO WAY WAS HER ANSWER. sHE DID HOWEVER ORDER ME ANOTHER BLOOD TEST AS IT LOOKED LIKE THERE MIGHT BE SOMETHING WRONG WITH MY LIVER.
HAD THE TEST DONE WED. SHE CALLED ME FRIDAY MORNING TO PUT ME BACK ON THE PREDNISONE AS MY BODY WAS NOT PRODUCING ANY CORTISOL.
i WAS SO UPSET AS i HAD HAD MY FIRST FEW DAYS OF BEING FREE OF THE PRED, AND AFTER ALL THE TROUBLE,PAIN,AND SICKNESS THAT i SUFFERED THROUGH TO HAVE TO GO BACK ON IT WAS SO SO DEPRESSING.i HAVE BEEN BACK ON IT FOR 7 DAYS NOW AND i STILL DON'T THINK MY BODY IS WORKING PROPERLY. SO MUCH FOR NEW DRS.
THAT IS MY SAD STORY OF ALMOST MAKING IT OFF. i FELT SO MUCH MORE LIKE A PERSON WITH NO FOG IN MY BRAIN. RIGHT NOW I AM AT 7.5MG AND WILL BE UNTIL i GO AGAIN ON THE 12 OF JULY.
SORRY IF i WENT ON TO LONG BUT I HAVE BEEN HOLDING IT IN FOR TOO LONG AND DON'T WANT TO BLOW AT PEOPLE WHO ARE TRYING TO HELP ME. THANKS FOR LISTENING. PATS
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angels watching over you
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Deanna
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Joined: 14 April 2006
Location: United States
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Posted: 23 June 2006 at 6:20pm |
Pats,
Sorry to hear about your struggle. I've been on high doses of prednisone for over 6 years. I'm at 14. I can't even make it down to 13 and your story makes me more relunctant to try. But all the complications keep pushing me on.
I guess the only thing I can say is that your body over time may be stronger later to go back off the prednisone. Obviously, something else in your body needs to be addressed. Maybe when they get that under control, you will be able to try to lower the prednisone again without all the horrible symptoms you described.
Lots of people here have gotten off of it. Most are still trying. But most of us are tapering at much lesser amounts that 2.5 per week. That doesn't mean your doctor was wrong. It just means it is very hard on your body.
There is a previous topic on prednisone and cataracts. It might help you understand why your doctor was trying so hard to bring you off quickly. But if you are not happy with your treatment, you need to address it with her. You need to understand and feel comfortable with your progress. There is nothing wrong with seeking a second opinion and asking others what is there experience.
I would feel very discouraged if I went through what you just did and got such terrible news. The change in prednisone is probably throwin all your emotions off. Let the people around you know that you are having a problem with your medications and that if you blow up, it's not because you want to. Warning people takes some of the pressure off of you and helps other deal with you. They actually can be understanding and supportive at times. My kids are.
I hope this turns around for you soon. Stay close and vent often.
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Deanna
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pats2
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Joined: 23 April 2006
Location: Canada
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Posted: 13 July 2006 at 10:16am |
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Hi Deanna
My life has not got any easier, My md called and said my level of cortisol was only 100 and normal is 200. so he bumped me up to 17.5 mg of pred. Saw the rh yesterday and she was not the least bit concerned that my level was so low. She might have screwed up my adreanal glands by lowering me to quickly now I have to wait to see another Dr about that. I tried to talk to her yesterday but she only wants me to listen to her not interested in what I have to say about what is happening in my body. Until last year there was only 1 rh here in town and now we have 2 this is the 2nd one. I sorry that I took so long to write but having problems with my computer and server it would let me on the site or into the messages. Your mail made me feel better and I thank you for it. I am as of today at 10mg. I dropped 7.5 this morning so here is ho[ping I don't crash out in a day or to. Hope you have a wonderful full of love and may you be pain free. Pats
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angels watching over you
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Deanna
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Joined: 14 April 2006
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Posted: 13 July 2006 at 5:06pm |
Pats, I don't like your RD's attitude about not listening to you. You are equals, two human beings, and she should listen to you and if her medical opinion is strong then she should explain her reasoning behind it. But the choice in any medical decision is always yours, not theirs.
You only said that there were two Rhuemys in town. Does your MD know of another one that's close enough that you could go to every few months, even if that meant some travel? I would call that doctor back and ask to talk to him as to what he thinks is going on and if he can give you a referral to another doctor if you are really unhappy with this Rheumy.
This whole situation with the prednisone and the level or cortisol in your body seems a strange way to administer it. Prednisone is usually prescribed by high the inflammation in your body. I believe that that they look at the sedimentation rate or ESR. If that's real high, they have to get it lower.
Now, if you have adrenal gland problems, I hope they are sending your to an Endro....can't think how to spell it (gland doctor). This is probably a really good idea. She actually might be on to something there. Glands can really screw up your body and may be one reason you were getting so sick trying to come off the prednisone.
Like I said, I don't like how she didn't want to listen to you and that needs to be addressed. But she may be looking at the overall picture and rating what is the biggest crisis for you. But you need to know that is what going on.
Maybe you could call and ask to talk to her again and just say that you need to understand better her strategy for treatment because it just wasn't clear to you when you left the office. Phrasing it carefully does not put you in an adversial position with her and she might actually give you some additonal information or her manner to you might clarify whether or not she is the right doctor for you.
It seems to me that they tapered you awfully quick off the prednisone. Mine will only let me go down my 1 mg a month. A few months ago I was a 20, now I'm starting to get to 13. Ideally, they want you at 7.5 becaue the side effect don't seem to happen at that point nearly as bad. But for some people, prednisone affects them a great deal even if they take it a short time. I immediately developed glaucoma. I also have thin skin and high blood pressure.
But, most doctors do try first to get you on MTX, Plaquenil or one of the biologics. They all seem to offer sufficient pain medicines. What did she say about all of this?
I sure hope you get to this new doctor soon. Are they going to do tests on your liver? MTX and a lot of medications can cause liver problems. The nausea could be coming from that.
It just sounds like you don't have enough information. Go find out some more and let me know what happens. I sure hope you feel better soon. How very, very frustrating.
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Deanna
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pats2
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Joined: 23 April 2006
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Posted: 14 July 2006 at 12:39pm |
Thanks Deanna
I really need some one to kick me in the ass, I went to my own Dr. this morning and told him how she has behaved. He also thinks that she has screwed with my adreanal gland by dropping me so fast at 2.5 every other week . My Dr looked up the number and when she had me down to 5 mg she did a cortisol check and I was not producing any but I was taking 5 mg. Does that make sense.And my # was 90 and 2 weeks ago it was 116. I asked my Dr for another test tomorrow so we can see if the 17.5 raise the level any higher. The normal is 200. I will have to go see the{ endocrinologist} big name. My Dr. and I decided that I would do my blood tomorrow and that I would stay at 10 mg for 4 more weeks and then do another test. I don't see the RD till the 24th of Aug. So I will make sure that I have all question that I want answered by her. The nearest Dr is 500 miles away.
My liver has been coming back with abnormal results so every time I have a blood test thay do a check on everything. Plus the RD told me that she doesn't think that I have RA or Lupus that I tested positive for 5 yrs ago. Then I was inflamed and in a wheelchair,swollen and 2 out of three symptons they just never got a sample in one of the swellings.But 2 DR seen and felt the swelling and over the yrs with the med I believe I am in remission and she is trying to bring me out by taking me off the pred. I honestly don't know and my mind is so screwy right now from the ups and downs of the Pred that I have to stay away from everyone in case I let go on them. I sorry that I have gone on so long but I haven't had anyone to complain or even talk to.
My husband left me 1 yr ago in debt over my eyeball he was unable to take care of me. I unfortunately bagged me a bad one. Some men are just not man enough to stand by their woman when they are down and sick. We are friends now and he does what he can for me usually anything I ask including coming over to do windows and other thing that I can no longer get to myself. Thanks for listening and for the advice I will keep in touch.
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angels watching over you
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pats2
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Posted: 14 July 2006 at 12:48pm |
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Only me again,
About the eyes I just had my eyes done 2 months ago and in 18 months my eyes had changed so much the eye Dr. could hardly believe that I had not had it for most of my life, He found that there is a CARARACT starting in my right eye, he also found that I now have DOUBLE VISION, and to top it off there was one more thing and that was that each of my eyes are WANDERING.just wandering around going where ever they please, makes it hard to place things on the counter or table have to make sure I am in far enough. How many others are out there that have no idea of their eyes going wacky. I would sugguest that anyone on pred should be getting their eyes check more than every 2 years.
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angels watching over you
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Deanna
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Joined: 14 April 2006
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Posted: 14 July 2006 at 2:11pm |
Pat, this all is just so terrible. At least your regular doctor is taking a reasonable approach. But your Rheumy is way off the wall. You really do need to see someone else if at all possible.
Here's what I'm wondering if you could do, something that I suggested to someone else, to help you get back on track. Find out where the nearest Mayo Clinic is to you. Call them. Tell them what all is going on, including your financial difficulties. See if they would be willing to fully examine you and get you back on track with your regular doctor managing the followup. I know that they help a lot of people and it sounds like you need more than one specialist to sort this out.
I know that there's a Mayo here in Phoenix, and one in Minnesota. I know traveling is really hard. But if you could go to one place that can have multiple doctors look at you, then you stand a better chance of getting everything under control. If a Mayo isn't available, look for a city with a teaching hospital. Some of them have programs where you do not have to pay outrageous sums.
Regarding the eyes, they should have been checking you at least every 6 months. I get checked every 4 mos because I have glaucoma from the prednisone and I'm on Plaquenil.
Are you even trying to work? If so, I don't see how you could be.
Regarding the financial situation with your ex (yes, he's a bum.) He is equally responsible for all financial debts unless it states otherwise in your divorce papers. If he is not holding up his end there, then you just tell the debtors to speak to him because you are now disabled and can't pay anything. He won't like it. But too bad.
There are other ways out of the debts. You can try Consumer Councilling Services and they can try and renegotiate all your payments. This gets you down to one, lower monthly payment and not interest. The bad part of this is then you are stuck with it. If your situation gets worse, they don't necessarily help you much more. After having been through it, I do not recommend it for people with chronic illness. Your income has to be stable.
You also have the option of talking to each of your creditors and explaining your situation. They may offer you some solution that you can live with.
The final thing, which I even hate to suggest but I did do myself several years ago, is to declare bankruptcy. If you do this, it will have a direct bearing on your ex's credit. Just the thought that you might do it might focus his attention better on solving these problems.
First, you have to figure out your health. Do all the things necessary to get it under control. Next, you need to find someone who can help you through this. Find some kind of social worker or counselor who can help you get some services started. You might find these through Catholic Family Services or Jewish Family Services or your local church. Look also in your phone book under Social Services.
Last, deal with your finances and only in small pieces.
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Deanna
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pats2
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Posted: 19 July 2006 at 4:50pm |
Hey Deanna.
My hubby left in Jan I was at the bankruptcy place in Feb. We are poor to begin with and my hubby lost his job after only 10 months. We both were working for the same company when we moved here. Spend most of our money getting here and now I would not change it but with in 3 months of being here I got deathly ill and was told I had RA and Lupus sle and that my levels were very high that was in 2002 March we started work in Nov 2001, and we lost 3 jobs in Aug 2002. We hired someone to work for me when I got sick. I was in a wheelchair for 7 month and could only climb the stairs on my butt. I could not work and hubby had a very hard time to find a job that even paid minumum wage. it was like that for 1 yr and the plant reopened and hired him back. So we started to live a little bit like normal but I was sick and my med were $ 1000.00 per month no medical to pay for it. So on the visa it went
we both quit smoking to make ends meet but it was just to little to late. I am not think about divorce, he just was not a man capable of taking care of anyone other than himself. In the 1 1\2 yrs that we have been apart we are able to be friends and I rely on him for everything from grocery shopping to Dr. appt. I have only a small handful of friends here and none drive so you see how it is. It is nice not to have to argue with him over anything
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angels watching over you
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Moonie
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Joined: 09 March 2005
Location: United Kingdom
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Posted: 11 August 2006 at 4:57am |
Hey Pats, I too almost managed to wean off the pred altogether recently, but because of an acute shoulder problem I'm back up to 30mg. I have the typical love-hate relationship with the stuff, after being on it for 10 years now at doses ranging between 80mg-5mg, but most of the time around 30mg, which seems to be my maintenace dose. I think after being on pred for so long my body has become dependant on it to a certain extent, but once this mini-flare is over I will start trying to taper down again, very slowly. I guess persistence and patience are the words of the day.
Hope things work out for you,
Best wishes, Moonie
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Age 24, Dx at 3 &14. Diagnosis: Adult Onset Still's Disease.
Current Treatment: Prednisone, Cyclosporin & Enbrel.
Past Treatments: Mtx, Arava, Gold, IV Ig Therapy, Cortisone shots & Knee surgeries.
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blithespirit
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Posted: 04 September 2006 at 7:23pm |
Even dropping 2 mg. at a time makes me quite cranky. Obviously, my adrenals aren't producing enough.
I recommend if you're dropping your dose, you try a fraction of dissolving DHEA under the tongue. You can buy it at health food stores. .But, it's a hormone, so it's good not to take it daily or your body can get dependent on it. Also, if you've got cancer, it can make cancer cells grow. But, I use it if my PMS or pred mood swings are off the charts. I find it helps relieve the everyone-stay-away-from-me prednisone blues.
Also, I hope you're supplementing with lutein, bilberry, astaxanthin (beta-carotene type stuff), fish oil, calc/magnes/D/zinc while you're on so much pred.
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