[bobber]

Hi
my dr has me on methylpredisone,,then after 1 week he;s trying me om prednsone,,i notice alot of you are not taking it,,or dont mention it in you regimeins,,please give me some feedback,,on the pros and cons,,did it not work? make you ill? or just a med that they put you on in the beginning,,,i dont like the feeling it gives me,,,but i;ll use it if it helps....i also notice that now at times my right pupil is larger than the left,,,im guessing its a neuro problem,,or maybe the meds are shocking the syatem,i started cymbalts 2day and came off zanflex,,,dr said not to do both at the same time..and whats your take on acetyl l-carnitine amino acid? supposed to be good for nuro problems,,,, thanks people.....bobber

[daniella]

Hi. I know someone with peripheral neuropathy who is on prednisone and finds it super helpful in pain. RSD is different but I do feel what works for one may not for another. I am think prednisone helps with inflammation though I am not sure and often is given for auto immune. I think the concern is getting off it but again I may not be correct. What dose of Cymbalta are you on as now I am on 120mg but before I was on too low of a dose so I did not see benefits. I think it takes time. Is the amino acid a supplement? There is a section for that and you may want to do a search cause I am not familiar. Many thoughts and better wishes

[fmichael]

Originally Posted by bobber

Hi
my dr has me on methylpredisone,,then after 1 week he;s trying me om prednsone,,i notice alot of you are not taking it,,or dont mention it in you regimeins,,please give me some feedback,,on the pros and cons,,did it not work? make you ill? or just a med that they put you on in the beginning,,,i dont like the feeling it gives me,,,but i;ll use it if it helps....i also notice that now at times my right pupil is larger than the left,,,im guessing its a neuro problem,,or maybe the meds are shocking the syatem,i started cymbalts 2day and came off zanflex,,,dr said not to do both at the same time..and whats your take on acetyl l-carnitine amino acid? supposed to be good for nuro problems,,,, thanks people.....bobber

Dear Bobber -

From what I've read, it's generally agreed that cortisteroids help CRPS/RSD. See, e.g., Pharmacologic Management of Complex Regional Pain Syndrome, Rowbotham MC, Clin J Pain, 2006; 22: 425-429, at 426, free fulll text at http://www.rsds.org/2/library/articl...mgnts_crps.pdf:

SYSTEMIC STEROIDS.
Steroids have been and continue to be administered by multiple routes for CRPS therapy. After early reports of success with systemic steroids,[26] Christensen et al[27] studied 23 patients and reported that 30 mg/d of oral prednisone was significantly better than placebo.

[26: Kozin F, McCarty DJ, Sims J, et al. The reflex sympathetic dystrophy syndrome. I. Clinical and histologic studies: evidence for bilaterality, response to corticosteroids and articular involvement. Am J Med. 1976;60:321–331.]
[27: Christensen K, Jensen EM, Noer I. The reflex dystrophy syndrome response to treatment with systemic corticosteroids. Acta Chir Scand. 1982; 148:653–655.]

But it's also my understanding that more doctors don't use them because of a general view - that may not be borne out at only 30 mg/day - that their long-term use poses the risk of too many side effects. Pharmacologic Therapies for Complex Regional Pain Syndrome, Mackey S, Feinberg S, Curr Pain Headache Rep. 2007; 11:38-43, at 40, free full text at http://www.rsds.org/2/library/articl...arma_crps.pdf:

In a review of the literature, Kingery[33] concluded that a short trial of corticosteroids had good support from the studies. However, longer courses of corticosteroids have a questionable risk–benefit ratio, and there are numerous contraindications.

[33: Kingery WS: A critical review of controlled clinical trials for peripheral neuropathic pain and complex regional pain syndromes. Pain 1997, 73:123–139.]

See also, US FDA Approved Prescribing Information, METHYLPREDNISOLONE - methylprednisolone tablet - Watson Labs at http://dailymed.nlm.nih.gov/dailymed...-f1f00909f6d1:

WARNINGS
In patients on corticosteroid therapy subjected to unusual stress, increased dosage of rapidly acting corticosteroids before, during, and after the stressful situation is indicated.

Corticosteroids may mask some signs of infection, and new infections may appear during their use. Infections with any pathogen including viral, bacterial, fungal, protozoan or helminthic infections, in any location of the body, may be associated with the use of corticosteroids alone or in combination with other immunosuppressive agents that affect cellular immunity, humoral immunity, or neutrophil function.[1]

These infections may be mild, but can be severe and at times fatal. With increasing doses of corticosteroids, the rate of occurrence of infectious complications increases.[2] There may be decreased resistance and inability to localize infection when corticosteroids are used.

Prolonged use of corticosteroids may produce posterior subcapsular cataracts, glaucoma with possible damage to the optic nerves, and may enhance the establishment of secondary ocular infections due to fungi or viruses.

[1: Fekety R. Infections associated with corticosteroids and immunosuppressive therapy. In: Gorbach SL, Bartlett JG, Blacklow NR, eds. Infectious Diseases. Philadelphia: WB Saunders Company 1992:1050-1.]
[2: Stuck AE, Minder CE, Frey FJ. Risk of infectious complications in patients taking glucocorticoids. Rev Infect Dis 1989:11(6):954-63.]

That said, the really interesting but controversial rheumatological/anti-inflammatory treatment involves the off-label use of an expensive line of drugs referred to as "Tumor Necrosis Factor-[Alpha] antibodies." Take a look at Successful Intravenous Regional Block with Low-Dose Tumor Necrosis Factor-[Alpha] Antibody Infliximab for Treatment of Complex Regional Pain Syndrome 1, Bernateck M, Rolke R, Birklein F, Treede RD, Fink M, Karst M, Int Anesth Res Soc. 2007;105(4):1148-1151, free full text at http://www.rsds.org/2/library/articl...teck_Rolke.pdf. But this time, there are far more serious side effects. (For anyone interested, note the "black box" warning at http://dailymed.nlm.nih.gov/dailymed...fo.cfm?id=8421.)

I hope this is helpful.

Mike

[bobber]

[QUOTE=daniella;523714]Hi. I know someone with peripheral neuropathy who is on prednisone and finds it super helpful in pain. RSD is different but I do feel what works for one may not for another. I am think prednisone helps with inflammation though I am not sure and often is given for auto immune. I think the concern is getting off it but again I may not be correct. What dose of Cymbalta are you on as now I am on 120mg but before I was on too low of a dose so I did not see benefits. I think it takes time. Is the amino acid a supplement? There is a section for that and you may want to do a search cause I am not familiar. Many thoughts and better wishes[/QU
im supposed to take 30mg 3times a day of cymbalta.... the steroids make me feel weird,,i dont like them,,i think your right,,,,one of my dr,s thinks that it may be neuro damage and not rsd,,,but he isnt factoring in that its spread to my other leg,,,,my prayers go up for you and everyone here,bobber

[bobber]

Originally Posted by fmichael

Dear Bobber -

From what I've read, it's generally agreed that cortisteroids help CRPS/RSD. See, e.g., Pharmacologic Management of Complex Regional Pain Syndrome, Rowbotham MC, Clin J Pain, 2006; 22: 425-429, at 426, free fulll text at http://www.rsds.org/2/library/articl...mgnts_crps.pdf:

SYSTEMIC STEROIDS.
Steroids have been and continue to be administered by multiple routes for CRPS therapy. After early reports of success with systemic steroids,[26] Christensen et al[27] studied 23 patients and reported that 30 mg/d of oral prednisone was significantly better than placebo.

[26: Kozin F, McCarty DJ, Sims J, et al. The reflex sympathetic dystrophy syndrome. I. Clinical and histologic studies: evidence for bilaterality, response to corticosteroids and articular involvement. Am J Med. 1976;60:321–331.]
[27: Christensen K, Jensen EM, Noer I. The reflex dystrophy syndrome response to treatment with systemic corticosteroids. Acta Chir Scand. 1982; 148:653–655.]

But it's also my understanding that more doctors don't use them because of a general view - that may not be borne out at only 30 mg/day - that their long-term use poses the risk of too many side effects. Pharmacologic Therapies for Complex Regional Pain Syndrome, Mackey S, Feinberg S, Curr Pain Headache Rep. 2007; 11:38-43, at 40, free full text at http://www.rsds.org/2/library/articl...arma_crps.pdf:

In a review of the literature, Kingery[33] concluded that a short trial of corticosteroids had good support from the studies. However, longer courses of corticosteroids have a questionable risk–benefit ratio, and there are numerous contraindications.

[33: Kingery WS: A critical review of controlled clinical trials for peripheral neuropathic pain and complex regional pain syndromes. Pain 1997, 73:123–139.]

See also, US FDA Approved Prescribing Information, METHYLPREDNISOLONE - methylprednisolone tablet - Watson Labs at http://dailymed.nlm.nih.gov/dailymed...-f1f00909f6d1:

WARNINGS
In patients on corticosteroid therapy subjected to unusual stress, increased dosage of rapidly acting corticosteroids before, during, and after the stressful situation is indicated.

Corticosteroids may mask some signs of infection, and new infections may appear during their use. Infections with any pathogen including viral, bacterial, fungal, protozoan or helminthic infections, in any location of the body, may be associated with the use of corticosteroids alone or in combination with other immunosuppressive agents that affect cellular immunity, humoral immunity, or neutrophil function.[1]

These infections may be mild, but can be severe and at times fatal. With increasing doses of corticosteroids, the rate of occurrence of infectious complications increases.[2] There may be decreased resistance and inability to localize infection when corticosteroids are used.

Prolonged use of corticosteroids may produce posterior subcapsular cataracts, glaucoma with possible damage to the optic nerves, and may enhance the establishment of secondary ocular infections due to fungi or viruses.

[1: Fekety R. Infections associated with corticosteroids and immunosuppressive therapy. In: Gorbach SL, Bartlett JG, Blacklow NR, eds. Infectious Diseases. Philadelphia: WB Saunders Company 1992:1050-1.]
[2: Stuck AE, Minder CE, Frey FJ. Risk of infectious complications in patients taking glucocorticoids. Rev Infect Dis 1989:11(6):954-63.]

That said, the really interesting but controversial rheumatological/anti-inflammatory treatment involves the off-label use of an expensive line of drugs referred to as "Tumor Necrosis Factor-[Alpha] antibodies." Take a look at Successful Intravenous Regional Block with Low-Dose Tumor Necrosis Factor-[Alpha] Antibody Infliximab for Treatment of Complex Regional Pain Syndrome 1, Bernateck M, Rolke R, Birklein F, Treede RD, Fink M, Karst M, Int Anesth Res Soc. 2007;105(4):1148-1151, free full text at http://www.rsds.org/2/library/articl...teck_Rolke.pdf. But this time, there are far more serious side effects. (For anyone interested, note the "black box" warning at http://dailymed.nlm.nih.gov/dailymed...fo.cfm?id=8421.)

I hope this is helpful.

Mike

thanks for the info,,,have you used them?if so how long,,of why not,, they make me feel weird,,,ive got my drs arent sure themselves if its a neuropathy or rsd,,, but as i told others,,,its n migrtaed to the other leg,,ive got another hip revision due in 6weeks,,,,is my failed surgery 9 weeks ago due to rsd migraated into the hip or is the cup loose,,,thats what in asking myself,,,talk about bad timeing,,,surgery is like pouring gas on an amber when you have rsd,,avoid it,,,,,,,,,,,,,,thanks mik,,bobber

[fmichael]

Originally Posted by bobber

thanks for the info,,,have you used them?if so how long,,of why not,, they make me feel weird,,,ive got my drs arent sure themselves if its a neuropathy or rsd,,, but as i told others,,,its n migrtaed to the other leg,,ive got another hip revision due in 6weeks,,,,is my failed surgery 9 weeks ago due to rsd migraated into the hip or is the cup loose,,,thats what in asking myself,,,talk about bad timeing,,,surgery is like pouring gas on an amber when you have rsd,,avoid it,,,,,,,,,,,,,,thanks mik,,bobber

Bobber -

No, can't say I have used either steriods or Infliximab for my RSD/CRPS. The rheumatologist who was the first to suggest an RSD diagnosis never even suggested steroids - because of the known issues with their long-term use - but was keen on doing Infliximab (marketed under the trade name Remicade) which he said had to be co-administered with methotrexate, a really nasty cancer drug, the 13 paragraph FDA mandated "black box" warning on the label can be checked out at http://www.nlm.nih.gov/medlineplus/d...s/a682019.html.

But that aside, I was in no position to take Infliximab in the first place, where there is a significant association - at least in children and young adults, for which I haven't qualified in a while - between TNF blockers and various cancers, and I already have a blood disorder that's an absolute prerequisite for developing multiple myeloma - bone cancer - with an average rate of "progression" of 1% per year, so that, roughly speaking, if someone lives forty years after being diagnosed with what I've got, the cumulative probabilty of developing MM is 40%, and that's without a TNF blocker! This was a point on which my internist was emphatic: an MM/CRPS combo was one daily double I didn't want to pull.

I hope that a low dose of prednisone really works for you. Having said this, I'm most concerned that with a very fresh case of RSD, your treating doc is apparently not recommending nerve blocks. This is exactly the time they have the greatest chance of success.

By way of example only, PLEASE look at "Efficacy of Stellate Ganglion Blockade for the Management of Type 1 Complex Regional Pain Syndrome," Ackerman WE, Zhang JM, South Med J. 2006; 99: 1084-1088, at 1087-88, free full text at http://www.rsds.org/2/library/articl...lion_block.pdf (patients who started SGB treatment within 16 weeks of onset of their symptoms had significantly better pain relief following SGB therapy):

We conclude from our study results that both increased and decreased vasomotor activity can occur with CRPS I depending on the duration of the symptoms. We furthermore conclude that SGB therapy is more efficacious with decreased vasomotor activity but becomes less effective with increased vasoconstriction. The mixed SGB efficacy results of our study are related to both the duration of the symptoms and blood perfusion in the affected hands. In summary, we feel that the early diagnosis and treatment of CRPS I should significantly improve patient outcome in the clinical setting.

Then too, I would join you in being hesitant to do anymore surgery at this time, unless you are working with an anesthesiologist who has experience with a technique sometimes referred to as "continuous regional anesthesia" in which local anesthetic is pumped into the site of incision during the surgery and in some cases for 2 - 3 days thereafter. Click on the RSDSA Medical Articles Archieve webpage at http://www.rsds.org/2/library/articl...ive/index.html then scroll down to open any of the 4 articles under the heading "CRPS and Surgery."

Finally, I am concerned about your report of pupils dilating at times in an uneven fashion. I would have that checked out by a good neurolgist on the sooner rather than later side of things, unless your doctor can tell you with certainty that's an established side-effect of the medications you're on.

Let us know as there's more information we can provide. (PMs are fine too.)

good luck,
Mike

[daniella]

I am not sure but before the rsd dx when I was dx with PN it was in one leg and then spread to the other and my neuro said that PN can spread as well. Have you had nc or emg? How did they come up with nerve damage? The treatment in rsd and pn can be similar. The thing with PN is if you can find the why behind it like if you have auto immune or diabetes you can treat that and it can really help. I would call your doctor and tell about your fears/concerns/reactions. Sometimes meds take adjusting time and sometimes it is not for you. Many thoughts