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03-29-2017, 01:17 PM   #1
Lisa
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Shingles

And not the kind that you put on a roof!!!

So, this shingles pain is FOR THE BIRDS!!!!! I got the rash on my torso, right side and wrapped around from midline of my back to my front, with the rash going right underneath my breast.....which makes things 'interesting' as far as getting a bra on when it is time to go back to work (2 week forced vacation from work!).....at least the blister are almost all popped and on their way to healing/crusting over, which will put me past the contagious stage....just in time to go out of town overnight for work!

On top of that, I had dropped my work car off at the shop a couple days before going out, and I found out 2 days ago that it will NOT be fixed -and will be toed back to our storage area...now, I have to hope it is there by Monday so I can get out there and get not only my work items out of it, such as my travel credit card (which I need to make my hotel reservation!) but also any personal belongings.....all I need is this stress too!

The shingles pain is nothing to sneeze at - feels like a BAD, and I mean BAD second degree sunburn, constant burning feeling...I do have Lyrica, which helps, but somehow I went through more than I should have (probably because I took it in the middle of the night a couple times), so I have to cut back until I have a new prescription. Thanks to health care regulations I can only get a 7 day supply at a time, which is costing me $25- a pop.....not bad, but not as good as my normal co-pay for medications. Hopefully I don't also have to go back and be seen by the doctor...they can just send in a new prescription.....I hope!

Ok, enough venting for now......time to go have a lie down before my daughter gets home from school!
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
03-29-2017, 01:36 PM   #2
ronroush7
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I am so sorry.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
03-29-2017, 03:49 PM   #3
Jabee
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You can only get a seven day supply of Lyrica now? I took it for a year and a half for chronic migraines and it never helped so I titrated off (it made me sleepy so it took a few months to get to the 150mg dosage) but I think I could get a month's supply at once. How annoying (and costly). Hope the pain gets better soon.
03-30-2017, 09:30 AM   #4
scottsma
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Lisa,sending support to you.I had shingles last year and your right,it's not funny.Feel better soon.
03-30-2017, 10:05 AM   #5
Lisa
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You can only get a seven day supply of Lyrica now? I took it for a year and a half for chronic migraines and it never helped so I titrated off (it made me sleepy so it took a few months to get to the 150mg dosage) but I think I could get a month's supply at once. How annoying (and costly). Hope the pain gets better soon.
Yes, because it is a controlled substance, it falls under the Affordable Care Act list that only allows a seven day supply at a time.......
04-09-2017, 08:12 PM   #6
Lisa
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Well, a little update......I did get a new prescription for Lyrica which was due a the week supply I think..... Much better!!!

However, this damned pain, holy crap!!!! Feels like a hot poker is being stabbed into my right breast in the underside......

I actually finally broke down last night, it was so bad. I don't think I have ever cried from Crohn's pain in my thirty plus years, yet I was in tears last night.
04-09-2017, 10:45 PM   #7
ronroush7
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I am sorry.

04-10-2017, 03:45 AM   #8
Catherine
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Have you tried Zostrix cream?
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
04-10-2017, 05:47 AM   #9
Lisa
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Have you tried Zostrix cream?
Had to look it up...that is capsaicin cream...no, i haven't yet - I have used lidocane patches which seem to help.

Just took a shower and that was an experience this morning...the hot water felt good and hurt at the same time lol.
04-10-2017, 11:54 AM   #10
scottsma
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It seems to be going on for a long time Lisa.I know the earlier you get on meds the better,I mean within two days of first suspecting you have it.I was given five days meds.,can't remember what,and was told I couldn't have more.When the rash started to dry up,I wasn't actually in pain as such,but it felt like nothing I've ever felt before so I can't describe it.I also had to sleep on my left side,which is not natural for me,and I found it difficult.I hope you start to feel better soon.
04-10-2017, 01:46 PM   #11
Lisa
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Scottsma- I was on anti-viral meds for 7 days once diagnosed...the blisters etc have all dried up, but what I am having is the nerve pain....my right side feels numb where I had the rash, and I get these nasty stabbing pains (my husband had similar last year when he had his shingles on his face/head).....

I actually broke down and called the doctor today to get a prescription for lidocane patches which help a little...and I made an appointment for Wednesday morning to be seen and hopefully get something stronger for the worst of the pain.....

Right now I'm hurting more because I haven't taken anything since this morning - I have a doctors appointment to have my left knee looked at and I didn't want to potentially mask anything!
04-10-2017, 02:57 PM   #12
Jabee
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That all sounds awful. I am really fortunate in that my GP gave me the shingles vaccine when I was first diagnosed. Hopefully I won't get them. A former neighbor took tegretol for the nerve pain. I hope you feel better soon.
04-13-2017, 09:06 PM   #13
Lisa
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Have you tried Zostrix cream?
I tried some capcasin the other night to see if it would help... Husband had it from when he had his bout with shingles last year.....

All I can say was it was a total failure!!! Thankfully I only tried it on two small spots, when I first put it on it seemed to help..... Then the BURNING started! I tried to wipe off what was on me, but it didn't help. So I got to lie in bed silently suffering....... This was a similar reaction that I had to protopic cream.....

Thankfully now I have a prescription for hydrocodone, which is helping along with the Lyrica. I have 5/325 strength, and for the most part I can get away with just one to keep the worst of the pain away. I also have lidocaine patches, which seem to help but I'm not sure if I'm having a reaction to them, very itchy, or if that is just the healing/nerve issues.
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