Guest guest Posted December 10, 2010 Report Share Posted December 10, 2010 There I was just about to travel to Canada with my son, his wife and 3 children when " Guess What " I can out in a prickly rash on my arm, which on closer inspection turns out to be SHINGLES. How unlucky am I. So the trip is on hold and I'm in alot of pain. Any remedy for this unrelenting pain. I'm taking the anti viral drug, and trying not to be too disappointd, but its not so easy. Judy T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2010 Report Share Posted December 10, 2010 Hi Judy, how terrible for you. My daughter Kelley had shingles on her face a couple of years ago, it was so bad, I did not believe shingles could be like that. she missed 2 months of work. I don't know how to help you out here, she was on mega doses of prednisone as I recall and that drug for shingles. Patience, because it takes a while. I never remember, are CML patients allowed to get the shot or not, and does it depend on the medicine we are taking ? I wish you a speedy recovery, so sorry you missed your vacation. You will enjoy it twice as much when you are well and can travel. Bobby a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club From: Judy Telford <judy_telford@...> Subject: [ ] shingles Date: Friday, December 10, 2010, 8:15 AM  There I was just about to travel to Canada with my son, his wife and 3 children when " Guess What " I can out in a prickly rash on my arm, which on closer inspection turns out to be SHINGLES. How unlucky am I. So the trip is on hold and I'm in alot of pain. Any remedy for this unrelenting pain. I'm taking the anti viral drug, and trying not to be too disappointd, but its not so easy. Judy T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2010 Report Share Posted December 10, 2010 sorry, she was not on prednisone, it was Valrex. my error. a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club From: Judy Telford <judy_telford@...> Subject: [ ] shingles Date: Friday, December 10, 2010, 8:15 AM  There I was just about to travel to Canada with my son, his wife and 3 children when " Guess What " I can out in a prickly rash on my arm, which on closer inspection turns out to be SHINGLES. How unlucky am I. So the trip is on hold and I'm in alot of pain. Any remedy for this unrelenting pain. I'm taking the anti viral drug, and trying not to be too disappointd, but its not so easy. Judy T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2010 Report Share Posted December 10, 2010 Judy so sorry to hear you have the shingles. I had them in Jan they are so painful and take alot out of you. I went to a neurologist who gave me gabapentin for the nerve pain. Those pain killers narcotics did not help much and percucet made me nausated then I had to take another pill 30 min before the percucet. The gabapentin is what helped me. I still have days with headache pain and sensitivity to light.  The neurologist know the pain you are having. Take Care Christa Boyd  ________________________________ From: ROBERTA DOYLE <rcd1929@...> Sent: Fri, December 10, 2010 10:56:17 AM Subject: Re: [ ] shingles  sorry, she was not on prednisone, it was Valrex. my error. a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club From: Judy Telford <judy_telford@...> Subject: [ ] shingles Date: Friday, December 10, 2010, 8:15 AM  There I was just about to travel to Canada with my son, his wife and 3 children when " Guess What " I can out in a prickly rash on my arm, which on closer inspection turns out to be SHINGLES. How unlucky am I. So the trip is on hold and I'm in alot of pain. Any remedy for this unrelenting pain. I'm taking the anti viral drug, and trying not to be too disappointd, but its not so easy. Judy T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2010 Report Share Posted December 11, 2010 Just want to make sure you've been seeing the CML video interviews I did at ASH. There's even one in Spanish with Dr. Cortes. It's all at www.patientpower.info/ash Let me know if these are helpful. Best Wishes, Schorr, Seattle andrew@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2010 Report Share Posted December 12, 2010 Hi Judy, So sorry to hear you have the shingles they certainly are horrible. Caladryl lotion does help a bit as it as lidnocaine (small amount local anaesthetic in it), which is the old treatment we always used. With Gavapentin - it is extremely expensive in Oz - @ $90+ as not on PBS. My husband has trigeminal nerve damage from his stroke and finally after many consults, the specialist said to try Gavapentin, but is only available for epilepsy here and realistically we couldn't afford it. The other alternatives were Amitryptiline (didn't do anything) and Tegretol another epilepsy drug which has helped a lot. Best of luck and so sorry to hear you have had to put off your Canada trip as I know how much you were looking forward to it. Regards From: Judy Telford <judy_telford@...> Cc: Sent: Monday, 13 December, 2010 12:31:13 AM Subject: [ ] shingles  Thanks Sue, I'll follow that up with my specialist. The pain tonight is almost unbearable, even with all the pain meds he has me on. I'll call him tomorrow and see what he says. Judy T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2010 Report Share Posted December 13, 2010 This is Ida , Zavie 's wife. I do not know if Zavie wrote you but in October I just had SHINGLES. The pain was excruciating and I missed the effective time for the anti virus - the first 72 hours. The doctor put me on LYRICA and I went for 5 ACUPUNCTURE TREATMENTS! The treatments worked and the pain subsided quite a bit and the duration of the SHINGLES lessened. I read about this on the internet. Maybe it is worth a try for you. Good luck and I hope you overcome it all really soon. From one sufferer to another and from one who understandscompletely, Cheers, Ida _____ From: [mailto: ] On Behalf Of Malseed Sent: December-12-10 5:55 PM Subject: Re: [ ] shingles Hi Judy, So sorry to hear you have the shingles they certainly are horrible. Caladryl lotion does help a bit as it as lidnocaine (small amount local anaesthetic in it), which is the old treatment we always used. With Gavapentin - it is extremely expensive in Oz - @ $90+ as not on PBS. My husband has trigeminal nerve damage from his stroke and finally after many consults, the specialist said to try Gavapentin, but is only available for epilepsy here and realistically we couldn't afford it. The other alternatives were Amitryptiline (didn't do anything) and Tegretol another epilepsy drug which has helped a lot. Best of luck and so sorry to hear you have had to put off your Canada trip as I know how much you were looking forward to it. Regards From: Judy Telford <judy_telford@... <mailto:judy_telford%40.au> > <mailto:%40> Cc: Sent: Monday, 13 December, 2010 12:31:13 AM Subject: [ ] shingles Thanks Sue, I'll follow that up with my specialist. The pain tonight is almost unbearable, even with all the pain meds he has me on. I'll call him tomorrow and see what he says. Judy T Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.