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Old 11-30-2007, 08:45 AM   #1
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Question Prednisone problems and questions

Look.. for years I've had back problems, both cervical and lumbar, with several accompanying diagnosis of degerative disc disease, spondylosis, bulging discs both cervial and lumbar, sciatica, numbness in my left leg for the last 3 years, ect. ect.

So I win my SSDI last October and get Medicare. Now I have to find new doctors because the clinic I was going to did not accept the Medicare group I signed up with.

This new doctor runs a lot of blood tests and I had, among other things, conflicting rheumatoid arthritis test results. Normal rheumatoid factor, but high.. something else I can't remember.

She asked me if Prednisone helped my pain when I took it (she does not want to prescribe me pain pills). I said yes, but I had only taken it for those short courses whenever I was having a crisis. So she decides I have, among other things... polymyalgia rheumatica...and puts me on 10 mg. Prednisone every day.

After two weeks on that I just couldn't take it anymore. I was awake off and on all night, hands jittery, dizzy, didn't feel good at all. I told her office what was going on and that I was going off of that Prednisone. Now I am afraid to go back in, but my pain is so bad I am taking 4-5 ibuprofens at the time.

How can I explain that taking Prednisone to me is like a death sentence on my life and that it is NOT getting rid of my pain? It lessens it some for a while, but not for my back problems totally and the side effects make my life miserable.

Why does tis doctor think Prednisone is a magic pill?

 
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Old 11-30-2007, 09:09 AM   #2
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Re: Prednisone problems and questions

I am so sorry for all what you are going through. I suffer from childhood RA and I know how pain is (by the way you are talking about C+ elivation)
IF you have time to go through all our posts on this board you will see how many of us (me included) have to go from one Dr to another, to have as many opinions as we can, to change Drs if they can't help us...
She is not one Dr on this earth, if she has no enough knowledge, there are others who will be able to help you.
Did you ever try a good PM DR? Do your homework, check who is a good PM in your area and just make an app. I am on disability after my surgery 21 month ago and only my husband is working now. But we got so tired from all this helpless Dr and went to NYC to HSS to find a good DR. It's very hard on us since they don't participate insurances, it takes 1 1/2 hr to get there, but to us it all worth it. I used to have local PM Dr who sent me to 9 worthless shots, they caused more pain for me and no help at all; he prescribed meds without checking if they work or not, they would forget to call for my PK and on a weekends I would end up without any meds in severe pain...
Don't you think you deserve better treatment? You don't have to be afraid to call your own Dr, he/she has to work with you and for you.
I was on Prednisone many times - i agree that besides that "moon face" you get so sick from it. I lost hair on it too.
Good luck to you, dear heart, and I hope you will get help you need.

 
Old 11-30-2007, 04:11 PM   #3
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Re: Prednisone problems and questions

Well, prednisone can be very helpful. Ive taken prednisone and never had does symptoms that you spoke of...especially during sleeping hours. it apparently depends on the strength of them...but regardless, one has to be wean off them and not stop dramatically. Take them long enough and strong enough, does give you the moon complex, and it also invigorates the appetite..so you may gain weight.

 
Old 11-30-2007, 05:52 PM   #4
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Re: Prednisone problems and questions

Thanks for your replies!!

Well, when I won my SSDI case and went on Medicare, I signed on to a community care group that help with the prescriptions cause I had so many.

The doctor choices are not that plentiful and those I did choose were not taking anymore Medicare patients. I had no idea it was going to be like this. So I am going to let my time run out (I think its the end of December) and just go back to the clinic I was at when prescriptions are cheaper anyway than say at Walgreens.

I'm just not happy with this polymyalgia rheumatica diagnosis on top of everything else and I just refuse to take that Prednisone. Why?


Besides the side effects I mentioned... as of June, 2007 I weighed nearly 300 pounds. I began a diet in July and have lost 55 pounds. My doctor was very happy. I am still on it and plan to lose another 100 pounds so I can move!! I feel way better, I can move now.. I can breathe, I don't stop breathing at night now and my blood pressure is under control for the first time in 15 years.

Then she throws the Prednisone at me telling me that it will probably put weight on me. I broke down in tears cause I had worked so hard to lose the weight. Then came the side effects.

When I took it for a short course I never noticed any problems.. but 10 mg twice a day...was WAY more than I had ever taken before AND for longer and I just can't. I just won't I guess is what I am saying.

If this is polymyalgia rheumatica.. or one of the things I am supposed to have, why is it lasting soooo many years?

I just don't understand now what is going on.

My blood kidney tests were abnormal too and she said it was from all the ibuprofen, plus one of my blood pressure meds... hydrochlorothiazide.

I am absolutely miserable. Dread going, to bed at night for the neck and shoulder pain is so severe, cramps in my legs and just steady aching deep pain in my left leg and no relief. I am now taking way too much ibuprofen I know... but scared to death of the Prednisone.

Anyway...thanks for listening and responding to my concerns!

 
Old 12-01-2007, 01:08 AM   #5
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Re: Prednisone problems and questions

If your blood tests have come back with unfavorable results in regard to ibuprofen, you have to get to taking an alternative medication to help control your pain and also help you keep your weight in control at the same time. Not an easy task.

Medicare doesn't pay doctors well at all, so they limit the number of patients they accept and certain medicare groups pay so badly, that some doctors won't take any patients at all from a particular medicare group. They make alot of money yes.. , but like us, they live within their own means as well and have to put food on the table at night too. Not an excuse.. just a reality.

I think you just have to be diligent in working with whoever you are seeing, in trying to find ways to meet all your needs as best as can be.
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Old 12-01-2007, 04:10 AM   #6
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Re: Prednisone problems and questions

They gave me predisone for my asthma. Then I gained a lot of weight. After the EPI's I got high blood pressure. They gave me BP meds including lasix. Then the asthma kicked in and then more predisone. Then the surgeon said I am to heavy. It's one big continuous circle. I stay away from predisone if I can. To much will make me feel like I am having a heart attack. Most of the University hospital doctors will take Medicare, have you tried getting in to see any of their doctors? I am under w/c right now. Are you seeing a spinal specialist now?

 
Old 12-01-2007, 06:44 AM   #7
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Re: Prednisone problems and questions

I felt I had to reply here. I was on prednisone for months approx. 8 mths. it flexed between 15 to 25 mg, at first I thought it was this magic pill, I was on it for breathing, then everytime I started to decrease it the effects were horrific. Every single doc. wanted me off it, everyone of them said it should only be used as short term & the the long term damge was to much. Needless to say my body went through h*** at the end of taking it & coming off, I did gain weight to. I compare it to an addict coming off a drug from everything I read, it was painful & scary, I would wake up in a pool of sweat & muscle cramps like you would not believe. It took me forever to wean off it. I am a firm believer in you know your body best & if you are not comfortable with something then your doc. should respect that. You are never suppose to just stop taking prednisone, you are suppose to wean off under docs. care. My sister was taking 5mg daily for arthristis (which she is nearly crippled with) & multipule health problems but even her doc. wanted to try to get her off. This is the first time I have ever heard a doc. encouraging someone to do this & it did shock me alittle. prednisone is called good guy bad guy, can work like magic at times & do alot of damage at the same time. Good luck, listen to your body & be careful to never just go off a med with out the docs knowledge. Sammy

 
Old 12-01-2007, 07:16 AM   #8
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Re: Prednisone problems and questions

I do understand what you are going through. For several years, I was treated with prednisone - 5 mg. a day. - for fibromyalgia...I felt wonderful...so much less pain...the funny part is that after about 5 years, I went to another doctor...and he said that I had the PM...same as you. I continued on the prednisone for a few more years...and went to an arthritis doctor...he said that I had fibromyalgia..not PM..OK...but to stay on the prednisone. This went on for several years...finally, the prednisone didn't feel as effective..so I weaned myself off of it..and I did it the correct way. THEN, I fell...and hurt my back and neck.....it took 16 months for the doctors to fix my cervical spine...far lateral herniation at L5/6 as well as other stuff that still remains. I have been trying to get the lumbar area of the back fixed for the last 3 1/2 years...takes a long time...and many different diagnoses. Well...right after the ACDF I had for the L5/6...I developed some pretty severe symptoms...like a heart attack...all of the chemicals in the blood said heart attack...and other things...went through a bunch of stuff and major testing...but it appears I didn't have heart attack..thank goodness...but still had major problems...my husband's endrochronologisist figured it out...I had hypoglycemia due to adrenal insuffiency caused by the prednisone...wow...and this was a few years after I stopped taking the prednisone...it left my adrenal glands really weak... I could have died from this...all of my body was effected by this..heart...etc. and the medical community didn't recognize what was going on ... how scary is this... thank goodness for my husband's doctor.. The funny part of the treatment for this problem is cortef (steroids...again).. Well with all of the epidurals etc...with all of the steroids in them)...... I have now developed more problems...the opposite of adrenal insuffiency...I now have too much of the steroids in my body...the moon face...30 plus pounds since May...and other things, cushings disease. (I stopped taking the cortef for several days after each epidural...per my doctor's advice, but it didn't seem to be enough..) Now I have to wean down on the cortef. What a mess...I started weaning 1/2 pill the beginning of Nov. and I can see that my face is less full...the weight is still there...but I really don't think I have gained anymore...thank goodness. It is a cycle...not a good one. The steroids can do wonderful things...make you feel great...help the inflammation BUT...it can cause bad things also. Please don't just stop taking any steroid..YOU MUST wean off of them at a very SLOW rate..months...even years to wean off...your adrenal glands must start working normally again...or you could become very ill..or worse. If you have the poly. myalgia...you must take the steroids to help you...BUT, you also will be tested as you go along...please see a rhumatologist or endrocholologist to help you... I think this is their area of expertiest... It is a long road..but you can get there...with the proper help..good luck to you.. You are not alone in your battle...others have been there...you just have to keep on looking until you find the right doctor...

Sage

 
Old 12-01-2007, 06:00 PM   #9
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Re: Prednisone problems and questions

ok.. I've made some mistakes. I didn't wean off the prednisone. I just quit taking it.

A few days after I did that I woke up really, really dizzy, breaking out in sweats and vomiting. Was that a reaction to quitting the Prednisone? I've never been on it longterm before, only the short courses.

Also.. on Medicare, can I make an appointment with specialist doctors myself?

The doctor I am seeing is a family doctor, btw. She was the ONLY available choice in the list of doctors made available to me. The others were not taking anymore Medicare patients.

BUT... if I go off of this group for Medicare patients I signed up on, then many more doctors become available to me.

 
Old 12-01-2007, 07:33 PM   #10
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Re: Prednisone problems and questions

I have just medicare, none of the groups they offered. Then for secondary (they pay the 20%) and meds 80%, I have Blue Cross. Usually I don't need a referral, because of the secondary being a PPO. I don't have the HMO tied into some Medicare plans. Most doctors offices don't take HMO's. I can't see anyone regarding my back, except the w/c doctors. After a settlement, then I can see who I want to, but it will come out of the Medicare set aside. Some of the specialist need referrals, but some don't. You would need to call them to see what you would need and if they take medicare.

 
Old 12-01-2007, 11:37 PM   #11
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Re: Prednisone problems and questions

I had the opposite effect from taking prednisone. I was a "pre-diabetic" but having to take it one time for asthma sent me over the edge to full blown diabetes.
Before it, my plasma insulin levels were 11 times higher than they were supposed to be, and my endocrinologist flat out told me to stay away from prednisone.
A month later, I had pneumonia and a really nasty series of asthma attacks that they couldn't bring under control, and had to go on prednisone. My GP contacted my endo and they had no choice but to put me on it, and my blood sugars were up over 300 +.
Never, just stop taking it, you have to taper off it, or you can do some serious damage to your body.
Sandi

 
Old 12-02-2007, 01:00 AM   #12
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Re: Prednisone problems and questions

Even on any use of prednisone, it must be backed off of slowly. If you have ever had a prednisone medrol dose pack.. You will notice you get a big whammy of the prednisone in the beginning and then for the remaining days, the dosage is lessened each day until you are down to next to nothing.

So if you ever have to be on it again, don't just quit this medication without weaning off it.

If you noticed when taking prednisone, it drastically speeds up your system (why a lot of people can't sleep, they feel gittery, some causes mood swings,etc). Stopping this medication suddenly after being on a high dose (which orally, it usually is a high dose), could literally cause a heart attack. This is a scary medication and is not to be taken lightly.

I have asthma and also mega allergies.. so I have had to use prednisone on many occasions throughout my life to date. You have to be really careful with this medication.

I can't speak to whether or not you can see a specialist right off being under medicare. I only have knowledge/understanding of how medicare patients are accepted and not, because I have helped out a friend who is a doctor in his office and/off in the past. I would contact your group you are with and find out if you can see a specialist directly or if you will need a referral. If you need a referral, ask the family doc you have seen for one.

Keep us posted on how you are doing
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Last edited by Justoneofus; 12-02-2007 at 01:00 AM.

 
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