Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 02-09-2010, 10:20 PM #1
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Default Question about steroids...

My 15 year old daughter is in a terrible flare up right now. The doc started her on a 10 steroid therapy to try to stop the flare. I have never heard of this but he uses it quite a bit. Has anyone ever tried this or had results from it?

Just wondered...you know, if it is that easy then why hasn't anyone ever done it before.
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Old 02-10-2010, 06:52 AM #2
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Cortisone is not a pain relieving medication. Instead, it's a powerful anti-inflammatory drug which is synthetically manufactured to mimic some of the natural hormones in the body.

Given by injection, infusion or orally, the effects of Cortisone are usually evident within a few days, and the effects can last up to several weeks.

I don't have RSD but I do take Cortisone for MS flare ups. I know that I always feel heaps better after a few days of treatment, and I hope your daughter does too.

If you want more information about Cortisone, why don't you post over in the Medication Forum. I'm sure mrsD would be more than happy to answer any questions for you. Here's the link just incase : http://neurotalk.psychcentral.com/forum72.html
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Old 02-10-2010, 03:21 PM #3
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Quote:
Originally Posted by momw/rsdchild View Post
My 15 year old daughter is in a terrible flare up right now. The doc started her on a 10 steroid therapy to try to stop the flare. I have never heard of this but he uses it quite a bit. Has anyone ever tried this or had results from it?

Just wondered...you know, if it is that easy then why hasn't anyone ever done it before.
Hi Mom, I'm sorry your daughters is in a flare. I've had RSD 15 years, wasn't diagnosed for 4 years. During the 4 years, I was having pt and my ortho gave me two shots- different times. while I was having therapy for frozen shoulder. I believe it shortened the pt to get range of motion back.
I've always heard that there there never be more than 3 cortisone injections in a year. And of all the Drs. I 'v had in 15 years, this ortho was the only one to do the cortisone shot. He is the team Dr. for the Diamondbacks Baseball Team here in Arizona.
Hope this helps.You seem to have some reservations. Have you gotten a 2nd opinion ? Take care and let us know how your daughter is. Thanks, Your friend with soft hugs for you both, loretta
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Old 02-12-2010, 01:00 AM #4
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I was given prednisone,,It was orally prescribed,,,It was in a pack that you took 6 4mg tabs the 1st day then 5 the next and you staggered down for a week,,The loading phase made me mentally agitated,which the instructions said would happened,,after day 3 on the tappering off, mentally i was better but it took ALL the joint pain away,,,the downside to this is,,I just had a Total hip replacement done a few months earlier,and predisone causes degeneration in bone exspecially in the hip joint[see in structions].so my ortho Dr didnt want me on them ,he want the healing processes not to be hindered...it was my pain mangement DR that prescribed them..either way,,they worked on pain relief for me,Although I know your daughter is probually doing the shot,,but in a way,,same concept,,,,as posted above,,it is a powerfull anti-inflammatory,,and works well,,but sometimes[as everything else] with a price,,,,If i could do the injections,,i would,,but I dont have any insurance
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Old 02-12-2010, 05:23 AM #5
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Quote:
Originally Posted by momw/rsdchild View Post
My 15 year old daughter is in a terrible flare up right now. The doc started her on a 10 steroid therapy to try to stop the flare. I have never heard of this but he uses it quite a bit. Has anyone ever tried this or had results from it?

Just wondered...you know, if it is that easy then why hasn't anyone ever done it before.
Hi mum

My son got prednisone 50mg orally for 10-15 days when he got the diagnose. The doctor said that it sometimes helped the adults and that we should try it. It dident help him but it didnt hurt him either, there are some side effect but the worse of them is with longer use, he felt very hot and that was the worst for him.

Gitte - Olivers mum
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Old 02-15-2010, 12:58 AM #6
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Hi mum

My son got prednisone 50mg orally for 10-15 days when he got the diagnose. The doctor said that it sometimes helped the adults and that we should try it. It dident help him but it didnt hurt him either, there are some side effect but the worse of them is with longer use, he felt very hot and that was the worst for him.

Gitte - Olivers mum
I did 4 rounds of steroids (oral multipacks) starting about a week after onset. Each time helped and the stellate ganglion blocks I get include steroids. There's a real improvement each time, it just doesn't seem to last very long. Good luck!
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Old 03-23-2010, 08:14 PM #7
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Default Steroids

My daughter's RSD results in burning blisters on her skin as well as internal involvement. The IV steroid (usually solumedrol) stops the flare's impact on her skin (usually). This time they are going to use a more dramatic approach with a 5 day high dose regimine as the normal dosage and then oral prednisone did nothing but leave her with a round face. Hope it works
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Old 03-23-2010, 10:21 PM #8
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Default Moms-please read!

Moms - I just have to ask you what treatments you have gone thru with your children. I run an RSD support group and a women took her son to the mayo clinics childrens hospital in boston and had AMAZING results. I can put you in touch with her!!!!!!!!!!!

Debbie

You can email me at spudsailor@aol.com
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Old 03-26-2010, 04:13 PM #9
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Hi Debbi,

I have a daughter with RSD and she went through the The Cleveland Clinic Pain Rehab hospital two times. She has had Ketamine Infusions 3 day four hour infusions twice, she has had sympathetic Nerve Blocks, PT OT, and other various things. Yes the programs are a great way to teach the kids how to manage their lives...BUT it doesn't take their pain away. It doesn't stop the RSD from spreading. The programs teach them coping skills. I highly recommend them for coping and managing pain. But, like I said, it doesn't take their pain away.


Sandy
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Originally Posted by debbiehub View Post
Moms - I just have to ask you what treatments you have gone thru with your children. I run an RSD support group and a women took her son to the mayo clinics childrens hospital in boston and had AMAZING results. I can put you in touch with her!!!!!!!!!!!

Debbie

You can email me at spudsailor@aol.com
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Old 03-27-2010, 03:12 AM #10
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Blank a wonderful program of Children's Hospital Boston, an affilliate of Harvard Med. Sch.

Quote:
Originally Posted by debbiehub View Post
Moms - I just have to ask you what treatments you have gone thru with your children. I run an RSD support group and a women took her son to the mayo clinics childrens hospital in boston and had AMAZING results. I can put you in touch with her!!!!!!!!!!!

Debbie
Debbie -

This looks like a great program. To begin, check out, A new approach to pediatric pain management, Pediatric Views, June, 2008:
This summer, Children's Hospital Boston will open the Mayo Family Pediatric Pain Rehabilitation Center (PPRC) at Children's Hospital Boston in Waltham. The PPRC will primarily treat children with complex regional pain syndrome (CRPS), also known as reflex sympathetic dystrophy (RSD), a nerve-based pain disorder associated with hypersensitivity to touch along with circulatory changes, including coldness, skin discoloration and swelling of the affected limb(s) . . . .
http://www.childrenshospital.org/vie...management.htm

And here's the homepage: http://www.childrenshospital.org/cli...geS2585P0.html. And while you're there, check out "About the Program" http://www.childrenshospital.org/cli...geS2585P4.html

That said, although several members of the staff of Children's Hospital Boston trained in pediatrics at the Mayo Clinic, and vice versa, The Mayo Family Pediatric Pain Rehabilitation Center (PPRC) is part of Children's Hospital Boston (CHB), the primary pediatric teaching hospital of Harvard Medical School, at which most of its physicians hold faculty appointments, and has no formal relationship with the Mayo Clinic. http://www.childrenshospital.org/abo...geS1394P0.html

The PPRC bills itself as "the the most comprehensive stand-alone, day hospital program of its kind in the United States, offering intensive multidisciplinary rehabilitation to children and adolescents who have not responded to traditional outpatient treatment" http://www.childrenshospital.org/cli...geS2585P0.html and came out of CHB’s Pain Treatment Service, which was established in 1986 as a multidisciplinary program for acute and chronic pain management for children. http://www.childrenshospital.org/cli...sublevel5.html

"In 2006, through the generosity of Sara Page Mayo and Richard Mayo, Dr. Charles Berde was awarded an endowed chair in Pediatric Pain Medicine. The Mayo Family followed this with a second donation of start-up funding to establish the PPRC as an innovative approach for rehabilitative treatment of RSD/CRPS using a partial-hospital model." Id. Apparently, the Mayo Family made its donations in thanks for the treatment of a member of their family. http://wbztv.com/local/childrens.pai....2.745998.html

Mike

PS For what it's worth, Richard Mayo is a founding partner of one of the larger investment management funds, GMO (Grantham, Mayo Van Otterloo & Co.), which, as of December 31, 2009, managed $107 billion in client assets. http://www.gmo.com/America/About/
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