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Old 09-02-2004, 03:29 PM   #1
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Question Does anyone have any info on long term use of predisone with RSDS??

My husband has Reflex Sympathetic Dystrophy Syndromehe has it in his back spinal cord and neck. Our doctor suggested we research effects of long term use of prednisone. It does help with the pain but I have heard that it does have other side effects suich as making the bones weaker and such. Has anyone had any experience or know anyone that has experienced long term side effects and use of prednisone?? Or does anyone have any ideas for severe inflammation in rsds????

Dana

 
Old 09-02-2004, 08:36 PM   #2
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Re: Does anyone have any info on long term use of predisone with RSDS??

I have been on Pred for about 7 months now. I suffer from an Autoimmune disorder. My immune system is attacking my liver. Unfortunatly, Pred is the only treatment there is for it. There is no cure. I have been on Various doses of Pred. There are many side effects to it. For me though, the side effects are worth it!! Like all meds, different people are affected differently. The common ones are, weight gain, moon shaped face (the cheeks get really puffy), depression, joint aches, swelling, tiredness, some people get insomnia, increased appatite, depletion of calcium, and many more. If you are on Pred, it is highly recommended to take a calcium supplement as it drains all the calcium out of your body. I take 1000mg of calcium a day. I had really bad side effects while on 40mg a day. I was one that had the depression from it, the weight gain, acne, tiredness and the moon shaped face!!! I am also on a taper schedule now. I have been on hig doses of 60 mg a day, and now I'm down to 10mg a day. I am also going through what they call "steroid withdrawal" . My joints are swelling and they hurt very bad. The taper must be done very slowly, over months. I would suggest looking up and learning all you can about Prednisone. For me, It was a lifesaving drug. The side effects can be bad for some, and not to bad for others. Good luck to you and your husband. Tina

Last edited by vamp36; 09-02-2004 at 08:39 PM.

 
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Old 09-02-2004, 10:22 PM   #3
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Re: Does anyone have any info on long term use of predisone with RSDS??

I do agree with Vamp, each person does react differently. For me it made me very hyper, gained weight, caused migraines or headaches, upset my stomache, diarrhea and increased my libido (which isn't such a bad thing). Being he is male he won't have to worry really about the excess hair growth.
I do advise that if he is a caffiene user he cut down or cut out as it will only add to the hyperness that most individuals end up having. I had many a sleepless night but at least I wasn't in such severe pain back then.

Your husband will need to get his kidneys checked every 6 months, if his doctor refused then I would see a new doctor, there are far too many risks with kidney failures and bleeds caused by steriods.

Like Vamp I was primarly on them as it was the only thing I responded to, I have a genetic disorder but it does or can borderline on Autoimmune. In fact most folks who do respond well often do have AI diseases.

It is not a medication you can start and stop at will, doing so can or will cause heart failure so there is a big risk there. There are also other side effects that are less common but do occur such as AVN where the blood flow to the bones stop and causes the bones to die, this is a very very painful condition and anyone who has ever taken oral steriods for any length of time are at risk, there is no cure but joint replacements and in most extreme cases amputation. The risk will increase with the length of time you are on the medications. For some reason doctors and pharmacies do fail to advise you of this. It's about a 3% risk but I've seen smaller percentages with things like the GI bleeds that they will tell you about.

Definately do some research and make the choice that is right for you, or shall I say your husband make the appropriate choice for him. Talk it over with the doctor and see if the risks are worth it for him, sometimes it is and sometimes it's the only thing that helps.

Best of luck
Barbie

 
Old 09-03-2004, 06:19 AM   #4
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Re: Does anyone have any info on long term use of predisone with RSDS??

Hey Dana, My wife had used pred since 88 to control inflamation from broken bones, post fusion, ankle reconstructions all since 88 for her condition called CMT, It's a degenerative genetic defect that causes deterioration of muscle and nerve in her extremeties. The condition as gotten so bad when they did the last ankle recpnstruction when the doc pulled on her heal capsule to check the integrety the entire capsule slippeed apart, the calcanous slipped right out and all the tendons and muscles were atrophied and white instead of having nice pink muscle bellies.She had ligemant transfers, achiles lengthening and a calcanous osteotomy.

She's had over 30 fractures in her feet, 3 stress fractures a couple years ago in her spine and several dozne other fractures including feet, hands, ankles, back, colorbone and neck. In the last 2 weeks 3 the huge compresson fractures of the spine she's know looking into PMMA vertebroplasty, all that aside, she had a occipitial block 3 weeks ago and then a cortozone shot for a previously repaired rotor cuff.

The lost shot of cort into her shoulder one week ago has triggered a shingles outbrak within 3 days, now a gift for life. Aside from the shingles she has advanced osteoperosis where she has no idea how she fractured 3 vertobrea, either from a minor rear ending in the car 3 weeks ago or simply stepping of the curb. This set of fractures is so severer and the bones offset now we are investigatiung the bone glue used for Vertebroplasty or Kyphoplasty, both procedure # 1 indications is for stress fractures from Osteo perosis, They insert a bone needle inject the glue, enzyme, solvent opaque die and anti bacterial and this fills the gaps of the fractures and filles the entire porous vertabrea. If the degeneration has caused a loss of vertebral high of at least 30%, Hers are called wedge fractures where the vertrbral bodies have actually opened making the procedure actually easier to inject. Just look up vertebroplasty and it will tell you exactly why it's indicated, Steroid induced osteo P with compression fractures.

My wife has become worse case scenario, and were trying to get a count on the number of fractires in the last few years years, It's mind boggling. My wife is worst case scenario which is parr for our course.LOL Gotta laugh or we would cry.

But yes there are dangers, none of these dangers were ever anthing more than an off hand side note the docs mention at the end. So if your willing to risk osteo P, collapse of the spine, shingles and surgery, Steroids are just great.

Sorry, the other folks are right but you need to watch and listen to your body, now with the outbreak of shingles, steroids are listed os an allergy and regardles she will never have another steroid, she's done a year on Niacalcum and 8 months on Fosamax and her Bone denstity was scheduled for 3 weeks from now to see if progress has been made by the treatment, NOT, There doesn't seem to be a point in testing since the proof is in the conditons she's now suffering. She's 38 by the way.

I would never wish the kind of back pain I live with on anyone and know she's living it. My daughter asked the other day if all these things were going to happen to her. We had to explain that my problems were from injuries and failed surgeries and moms were a combination of many different problems, but it's unlikely she will have or develop the severity of problems we have.

Steroids are nasty stuff, should only be the last choice and then you reach a point where they have done so much damage you can't ever take them again. There are naturally occuring steroidsor NSAIDS, I would look into homeopathic versions, talk to a DO about safer version of natural steroids and limit the medrol use, She not only has gone through dozens medrol dose packs, dozens of injections of depomedrol but they had her simply taking 40-60 mgs of pred a day for months trying to reduce the inflamaton from swelling and reduce pain because in the mid 80, simply managing pain and other options were not available.

But with the copays, meds,and diagnostics, once again, we are behind the 8ball as far as trying to pay rent this month. What do you choose, pay your bills or pay for your medical care.

I would look for a beter way because the risks are very real. Depomedrol, the steroid used in ESI's actually contains polyetheleneglycol, "antifreeze" as a preservative. It demylanates nerve tissue, cause OP and arachnoiditis and can induce a shingles outbreak that becomes a friend for life and then you get to use extremely expensive meds like aclivor , anti virals to manage the outbreaks.

They may tell you the risks but I bet the docs won't tell you about the details of there patients that have had adberse reactions and what the future holds for them now. Like invasive spinal procedures to glue her bones back together, fracture after fracture, shingles and a single injection of any med can cause a RSD flair just as a simple inury can. Something sis going nuts wtith her nervous system and it's not like the can undue the Ocipital block or remove the steroids from her shoulder.

Now she just gets to ride out the side effects, Not to mention what it does to your toungue, dry mouth and dental carries from dry mouth. He needs to live with a water bottle and likely get a flouride rinse to try to preserve his teeth for as long as possible if that's not already an issue.

Again I'm on the far right of it can happen, it's happened with both our conditions. You won't know when the last dose is when you have reached max dosing that causes damage that can't be reversed. It's a risk that only he can make the decision on and investigate something other than prednisone for his care.

Has he ever had Lidocaine infusions? It's a less damaging way to manage neuro pain, so are using drugs that treat neuro pain like NMDA blockers such as methadone, dextromathorphan "dexalone" or the new anti parkinsons med Nemanda may be worth a trial.

Sorry to be the stick in the mud but I'm living that friggin nightmare caused by steroids and it's very real and we had no indication she was maxed untill one final injection. That started the shingles, started the back pain flair that led her to the doc to discover this set of compression wedge fracturs, the only good thing is that vertebroplasty with PMMA is a fairly succesful way to glue vertabrea back together and there is a treatment option, fusing isn't an option because the bones wouldn't hold the hardware.
Good luck, Dave

Last edited by Shoreline; 09-03-2004 at 06:53 AM.

 
Old 09-03-2004, 06:51 AM   #5
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Re: Does anyone have any info on long term use of predisone with RSDS??

I just wanted to mention this to anyone who is taking pred and is also taking any SSRI for depression.The combo can and has caused people(my son included)to end up with a rather obscure form of bi polar disorder called bi polar III.My son has been on pretty low doses of pred now since his liver transplant back in 2000.when he was Dxed with depression,he was started on prozac,he all of the sudden (about the end of his first month on it)started mood swings and over the course of this past year has been on four different SSRIs with changes in dosages,and with every change in dosage, he would,within two weeks of EVERY change, end up having just horrid over the top manic type episodes.He also had very profound changes in his personality.after two mental health hospital stays,with the last this past march,He was finally Dxed with the bi polar III.this kind of bi polar is not actually a "true" bi polar but you manifest all of the manic type behavior.His doc said that this was definitely induced by the antidepressants and that the prednisone that he was on actually triggered this cycle of nightmares once the AD was added.i was really suprised the night before last on an episode of dateline when they were interviewing Jane Pauley and this very same thing happened to her!we have absolutely no history in either side of the family of any type of major mental illness like bi polar.and according to Jane ,she does not either.I am not posting this to scare any one believe me,i just think that everyone who is on some sort of SSRI and is also taking any form of Pred,really needs to be very watchful about any significant changes in behavior and immediately report this to your doc.I never would have thought that an interaction between these two drugs would have been any kind of a problem,i even called the transplant center before I let my son go on the very first SSRI and was told that there shouldn't be any problem at all and that the coordinator had many patients on these two types of meds.Well, now THEY know that it can be a very big problem, believe me.They were really shocked to find this connection as well.please, just be careful,K?,Marcia

 
Old 09-04-2004, 05:14 AM   #6
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Smile Re: Does anyone have any info on long term use of predisone with RSDS??

Quote:
Originally Posted by Shoreline
Hey Dana, My wife had used pred since 88 to control inflamation from broken bones, post fusion, ankle reconstructions all since 88 for her condition called CMT, It's a degenerative genetic defect that causes deterioration of muscle and nerve in her extremeties. The condition as gotten so bad when they did the last ankle recpnstruction when the doc pulled on her heal capsule to check the integrety the entire capsule slippeed apart, the calcanous slipped right out and all the tendons and muscles were atrophied and white instead of having nice pink muscle bellies.She had ligemant transfers, achiles lengthening and a calcanous osteotomy.

She's had over 30 fractures in her feet, 3 stress fractures a couple years ago in her spine and several dozne other fractures including feet, hands, ankles, back, colorbone and neck. In the last 2 weeks 3 the huge compresson fractures of the spine she's know looking into PMMA vertebroplasty, all that aside, she had a occipitial block 3 weeks ago and then a cortozone shot for a previously repaired rotor cuff.

The lost shot of cort into her shoulder one week ago has triggered a shingles outbrak within 3 days, now a gift for life. Aside from the shingles she has advanced osteoperosis where she has no idea how she fractured 3 vertobrea, either from a minor rear ending in the car 3 weeks ago or simply stepping of the curb. This set of fractures is so severer and the bones offset now we are investigatiung the bone glue used for Vertebroplasty or Kyphoplasty, both procedure # 1 indications is for stress fractures from Osteo perosis, They insert a bone needle inject the glue, enzyme, solvent opaque die and anti bacterial and this fills the gaps of the fractures and filles the entire porous vertabrea. If the degeneration has caused a loss of vertebral high of at least 30%, Hers are called wedge fractures where the vertrbral bodies have actually opened making the procedure actually easier to inject. Just look up vertebroplasty and it will tell you exactly why it's indicated, Steroid induced osteo P with compression fractures.

My wife has become worse case scenario, and were trying to get a count on the number of fractires in the last few years years, It's mind boggling. My wife is worst case scenario which is parr for our course.LOL Gotta laugh or we would cry.

But yes there are dangers, none of these dangers were ever anthing more than an off hand side note the docs mention at the end. So if your willing to risk osteo P, collapse of the spine, shingles and surgery, Steroids are just great.

Sorry, the other folks are right but you need to watch and listen to your body, now with the outbreak of shingles, steroids are listed os an allergy and regardles she will never have another steroid, she's done a year on Niacalcum and 8 months on Fosamax and her Bone denstity was scheduled for 3 weeks from now to see if progress has been made by the treatment, NOT, There doesn't seem to be a point in testing since the proof is in the conditons she's now suffering. She's 38 by the way.

I would never wish the kind of back pain I live with on anyone and know she's living it. My daughter asked the other day if all these things were going to happen to her. We had to explain that my problems were from injuries and failed surgeries and moms were a combination of many different problems, but it's unlikely she will have or develop the severity of problems we have.

Steroids are nasty stuff, should only be the last choice and then you reach a point where they have done so much damage you can't ever take them again. There are naturally occuring steroidsor NSAIDS, I would look into homeopathic versions, talk to a DO about safer version of natural steroids and limit the medrol use, She not only has gone through dozens medrol dose packs, dozens of injections of depomedrol but they had her simply taking 40-60 mgs of pred a day for months trying to reduce the inflamaton from swelling and reduce pain because in the mid 80, simply managing pain and other options were not available.

But with the copays, meds,and diagnostics, once again, we are behind the 8ball as far as trying to pay rent this month. What do you choose, pay your bills or pay for your medical care.

I would look for a beter way because the risks are very real. Depomedrol, the steroid used in ESI's actually contains polyetheleneglycol, "antifreeze" as a preservative. It demylanates nerve tissue, cause OP and arachnoiditis and can induce a shingles outbreak that becomes a friend for life and then you get to use extremely expensive meds like aclivor , anti virals to manage the outbreaks.

They may tell you the risks but I bet the docs won't tell you about the details of there patients that have had adberse reactions and what the future holds for them now. Like invasive spinal procedures to glue her bones back together, fracture after fracture, shingles and a single injection of any med can cause a RSD flair just as a simple inury can. Something sis going nuts wtith her nervous system and it's not like the can undue the Ocipital block or remove the steroids from her shoulder.

Now she just gets to ride out the side effects, Not to mention what it does to your toungue, dry mouth and dental carries from dry mouth. He needs to live with a water bottle and likely get a flouride rinse to try to preserve his teeth for as long as possible if that's not already an issue.

Again I'm on the far right of it can happen, it's happened with both our conditions. You won't know when the last dose is when you have reached max dosing that causes damage that can't be reversed. It's a risk that only he can make the decision on and investigate something other than prednisone for his care.

Has he ever had Lidocaine infusions? It's a less damaging way to manage neuro pain, so are using drugs that treat neuro pain like NMDA blockers such as methadone, dextromathorphan "dexalone" or the new anti parkinsons med Nemanda may be worth a trial.

Sorry to be the stick in the mud but I'm living that friggin nightmare caused by steroids and it's very real and we had no indication she was maxed untill one final injection. That started the shingles, started the back pain flair that led her to the doc to discover this set of compression wedge fracturs, the only good thing is that vertebroplasty with PMMA is a fairly succesful way to glue vertabrea back together and there is a treatment option, fusing isn't an option because the bones wouldn't hold the hardware.
Good luck, Dave
Yikes I'm gonna have to come back and read that whole thing you wrote. Wow it sounds like youre wife is in awful awful pain like my hubby. I am not familiar with CMT. Yeah my husband has similar problems he is already dealing with rsds and that in itself is a horrible ordeal for anyone to go through or watch thier spouse go through. You sound like you have a plate full too like myself. My husband has similar problems with his back basically seems like everytime he moves he has a new disk buldging or compressed or herniated. He has 9 disks in his neck like that everyone but the very top one is either herniated compressed or herniated, he has 2 bone spurs there too. In the middle of his back he has 2 more disks like that and he has 4 in his lower back, including a crushed disk, partially severed nerve other nerve damage, 3 bone spurs...i think you have a good idea also he has ankylosing spondylitis. And with all that damage in his back now he has inflammation just ravashing his body. He is in full blown stage 3 of rsds btw since you seem to be familiar with that disease. wow it sounds like we need to do a lot of research on the prednisone. But i still want to talk to othjer people that has gone through a long series of prednisone. I'm so sorry for you and youre wife. I know dealing with my husbands rsds and as it can be very diffacult. I know i have spent a many nights staying up with him while he cried because he was in horrible pain. I know I have spent a many restless nights crying all night also. It takes a lot of love and great srength and not to mention energy, to deal with all the pain our spouses are going through. Maybe i need to start a support group just for spouses of chronic pain patients. Wanna join if I start one? Anyways thanks I will come back and read it whenm hubbys not griping in background. LOL Plus it's like 7 am too early.

For you others please keep posting it is very important that I read all youre stories abviously this is going to take a great deal of thought and weighing of options. Like our doc said sometimes the side effects don't seem so important if you can get pain under control. Soo keep posting so i can educate myself on these prednisone pills. Thank you all for posting.

 
Old 09-09-2004, 06:40 PM   #7
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Re: Does anyone have any info on long term use of predisone with RSDS??

GoddessDana,
I have had RSD for four years and been an active member of many boards since then. I've never heard of anyone using Prednisilone for RSD.
Have you tried asking on an RSD board? Maybe someone there might be able to give you some insight.
x Kate

 
Old 09-11-2004, 10:23 PM   #8
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Re: Does anyone have any info on long term use of predisone with RSDS??

My husband was prescribed Prednisone for a hernaited disc on and off for 6 years before he had surgery. After another 2 years of aching hip joints and a misdiagnosis of Bursitis,he was found to have AVN in both hips. He has already had a core decompression done on his rt hip but it failed so he is now scheduled for a hip replacement in Feb/05. His left hip has AVN also but it has not spread enough to need surgery. No other joints are affected yet but he has started developing pain in his knee joints. The Drs believe it was his 6 yrs of Prednisone usage that brought on his AVN along with his ESI's. We have banned any steroid usage in our home. I am a chronic pain patient myself and the first thing I told my Ortho and my PM Dr is NO SHOTS!!! They listened to my story and both agreed we would not go that route. Whether it is because I told them I knew the dangers and was not going that route w/o a GUARANTEE which of course they couldn't give,that I wouldn't develop AVN, or they know how common AVN is becoming with the use of steroids,I don't know but I am on narcotics for pain control. I recently talked with a 34 year old woman who had both hips replaced and I also talked with a 38 year old woman who is having both hips replaced because of Prednisone taken for Asthma. Both of these ladies developed AVN. Please be careful and make sure its your ONLY alternative. I've watched my husband struggle for 3 years as his hip bones die because he took a medicine to HELP his pain. Its incurable.

 
Old 09-12-2004, 07:51 AM   #9
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Re: Does anyone have any info on long term use of predisone with RSDS??

Quote:
Originally Posted by KateInAustralia
GoddessDana,
I have had RSD for four years and been an active member of many boards since then. I've never heard of anyone using Prednisilone for RSD.
Have you tried asking on an RSD board? Maybe someone there might be able to give you some insight.
x Kate
Well they aren't giving it to him specifically for RSDS RSDS is just one of the many problems my husband has. He also has Ankylosing spondylitis. I don't know which disease is causing him severe inflammation. The inflammation is ravashing his body. Not to also mention that he has every disk but the top in hios neck either herniated compressed or buldging he has 2 bone spurs in his neck he has 2 disks between his shoulder blades same as neck and he has 4 in lower back that has a bunch of disks out or herniated and a crushed disk as well as 2 bone spurs in lower back he also has some severed nerves and partially severed nerves. He's one screwed up duck. I'll put it to you this way..... Dale had severe pain in his chest. He went to the doctor who in turn took x-rays of his chest. The doctor freaked. He had thought Dale ruptured that lining that seperates the stomache from the chest cavity and had his intestines wrapped around his heart. Doc sent him to the hospital for a cat scan and another test I can't think of right off hand. Anyways it turned out that he had inflammation very badly around his heart and lungs. So now we are trying to get that inflammation out. It works as long as he takes prednisone. But I am very worried about the side effects. Do any of you guys know of a good anti-inflammatory? Something has to give. He feels like he has a 500 pound man sitting on him or a wrestler has him in a bear hug and won't let go. He can't go on feeling this way. he wakes up all hours of the night. Any suggestions at all/?????

 
Old 09-12-2004, 07:54 AM   #10
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Re: Does anyone have any info on long term use of predisone with RSDS??

Quote:
Originally Posted by callie3
My husband was prescribed Prednisone for a hernaited disc on and off for 6 years before he had surgery. After another 2 years of aching hip joints and a misdiagnosis of Bursitis,he was found to have AVN in both hips. He has already had a core decompression done on his rt hip but it failed so he is now scheduled for a hip replacement in Feb/05. His left hip has AVN also but it has not spread enough to need surgery. No other joints are affected yet but he has started developing pain in his knee joints. The Drs believe it was his 6 yrs of Prednisone usage that brought on his AVN along with his ESI's. We have banned any steroid usage in our home. I am a chronic pain patient myself and the first thing I told my Ortho and my PM Dr is NO SHOTS!!! They listened to my story and both agreed we would not go that route. Whether it is because I told them I knew the dangers and was not going that route w/o a GUARANTEE which of course they couldn't give,that I wouldn't develop AVN, or they know how common AVN is becoming with the use of steroids,I don't know but I am on narcotics for pain control. I recently talked with a 34 year old woman who had both hips replaced and I also talked with a 38 year old woman who is having both hips replaced because of Prednisone taken for Asthma. Both of these ladies developed AVN. Please be careful and make sure its your ONLY alternative. I've watched my husband struggle for 3 years as his hip bones die because he took a medicine to HELP his pain. Its incurable.
What exactly is AVN????

Dana

 
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