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 01-17-2010, 12:50 PM #1
sailmaker510 sailmaker510 is offline
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Default RSD/CRPS and steroids

I remember seeing someplace that people with RSD/CRPS should not be placed on steroids for things like itching.

Does anyone have any information on this?? I would greatly appericate any links or help on this as his dermotoligist wants to try steroids for the swelling/itching/blisters.

The severe swelling/redness/itching in upper body and the massive blisters on the foot that developed in November showed a major improvement after a lumbar block. However, it seems that attempting to walk on his feet increases the swelling/redness/itching on upper body and legs. He has RSD/CRPS in R - knee, both feet and it looks like it is spreading to his upper body (RSD/CRPS since 3/2006).

Thanks to all the members for your help and support. This is one awful disorder and I pray each day for relief for all who have this.
Respectfully,
carrol
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Old 01-17-2010, 03:13 PM #2
SandyS SandyS is offline
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Hi Carrol,

My daughter has RSD and she also suffers from Asthma. Her asthma sometimes needs steroids. Steroids are a miracle drug, but unfortunately like all medications they have side effects. Who has the RSD? I take it that it isn't you and you need some information. My daughters pain increases when she is on steroids, but that is her. Does he have an RSD doc? If so you should also ask them. I will see what I can find, and post the links if I find anything. Good luck, I know how difficult it is watching a loved one go through this, and how you feel, it can be very overwhelming when you can't get answers and the help you need for them. Keep moving forward, because you are the advocate. My prayers are with you.

Sandy

Quote:
Originally Posted by sailmaker510 View Post
I remember seeing someplace that people with RSD/CRPS should not be placed on steroids for things like itching.

Does anyone have any information on this?? I would greatly appericate any links or help on this as his dermotoligist wants to try steroids for the swelling/itching/blisters.

The severe swelling/redness/itching in upper body and the massive blisters on the foot that developed in November showed a major improvement after a lumbar block. However, it seems that attempting to walk on his feet increases the swelling/redness/itching on upper body and legs. He has RSD/CRPS in R - knee, both feet and it looks like it is spreading to his upper body (RSD/CRPS since 3/2006).

Thanks to all the members for your help and support. This is one awful disorder and I pray each day for relief for all who have this.
Respectfully,
carrol
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loretta (01-17-2010)
Old 01-17-2010, 06:28 PM #3
loretta loretta is offline
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Quote:
Originally Posted by sailmaker510 View Post
I remember seeing someplace that people with RSD/CRPS should not be placed on steroids for things like itching.

Does anyone have any information on this?? I would greatly appericate any links or help on this as his dermotoligist wants to try steroids for the swelling/itching/blisters.

The severe swelling/redness/itching in upper body and the massive blisters on the foot that developed in November showed a major improvement after a lumbar block. However, it seems that attempting to walk on his feet increases the swelling/redness/itching on upper body and legs. He has RSD/CRPS in R - knee, both feet and it looks like it is spreading to his upper body (RSD/CRPS since 3/2006).

Thanks to all the members for your help and support. This is one awful disorder and I pray each day for relief for all who have this.
Respectfully,
carrol
Hi Carroll, I'm sorry for you and your loved one having RSD. I've had it for 15 years-full body now and internal. I read just a few days ago, someone on the forum talking about a cream made by a compounding pharmacist. Of course the Dr. gives the ingredients. If I can find it, I'll private message you. But I do remember ketamine and a cream. I'll look for it. I've had the blisters and they are awful. Be sure and keep them clean. My Dr. had me sitting in warm- not hot- water several times a day. Then softly clean them. The water with epson salts, draws out the infection. It's extremely important to keep the infection under control. Take care of your self, your loved one treasures your love and help. My husband has been wonderful-more in the later years after he did research. My daughter and son in law are also wonderful. Soft hugs for you and you loved one. loretta
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Old 01-17-2010, 11:03 PM #4
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My daughter is the one with RSD and she has just started with bright redness on her cheeks that is raw like a sunburn and dry and itchy. We are planning to ask at the doc tomorrow what can be done for her.
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Old 01-18-2010, 02:00 PM #5
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Mom,

Have they ever tested her ANA, for Lupus, My daughter she is 16 and has RSD and she has had the flushing as well, she has had in the past positive ANA's and then negitive. they are usually positive when she is in a hard flare...Ask your doctor during the next visit. Insist on blood work, how was her RSD disagnosed? Does she have other underlying medical conditions???? i would love to talk with you if you have some time. You can pm me your phone number or we can talk by email...

Thanks Sandy

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My daughter is the one with RSD and she has just started with bright redness on her cheeks that is raw like a sunburn and dry and itchy. We are planning to ask at the doc tomorrow what can be done for her.
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Old 01-18-2010, 03:59 PM #6
sailmaker510 sailmaker510 is offline
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Thank all of you for your informatilon and help.

This is a 62 yro friend (I just happened to be the one he call for a ride from the airport when he was injured on the North Slope of Alaska during the worst oil spill on the slope "06". Had a quad tendon rupture (laid on ice unknow how long at 40 below) before he was discovered. This was a 4/5 foot fall from a hi cub van. Ortho said it may be CRPS after 9 months - pain managment confirmed with block and temp/color changes. He then developed upper body symptoms (dr dx was independent spread). Had a trial SCS and went well - during attempt at perm one - In OR when it was turned on it went to both feet (they could not keep him under the pain was so bad).
It is a w/comp case (GOODY-GOODY) so he has been tested for any and everything.

This last flare was really bad. His dr has said he has a severe and rare form of CRPS (one says he has weird ****, the other one reads his report and say DR. J says you are screwed - well at least they are honest).

With this reddness/itch - it appears it may be dermatitis. But the dermotolist says that with him all bets are off because of the CRPS. He has given him a ointment called CLOBETASOL PROPINATE and it does seem to help with the inflammation (redness) and the itching. Has him in setopress wraps (on the lower legs) for 6-8hrs a day for the swelling.

We do the eposn salt soaks and it does help. The drs were amazed that after he had the block how quickly the upper body cleared and the blistered foot started to heal.
He became a diabetic in 07 - a year after the accident - but it is well controlled - his last two A1C were 5.8. He is on two metformin a day and does try to do pool PT three times a week. Other than diabeties and CRPS he is healthy. The bad part is living in alaska - he is 6'4" about 280 lbs - can not stand much to touch him from the thighs down so travel would be a real challange - as he is not weight bearing.

Again - thank to all of you and my you are all in my thought as you stuggle with this horrible disorder.
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