[barbra]

#1060456

This is kind of an update.

The endo did an ultra sound in his office and sent me a letter saying the nodules are about the same size as a year ago when this whole circus started and to continue with the meds. Next appointment is in August when I will have some questions for him.

Last time I wrote I felt real good and my levels were all in the normal range, yay, finally. In fact as far as I can tell they still are because I still feel good. Well, aside from that small pesky rash under the right corner of my mouth. I thought maybe I had started to drool while sleeping and irritated the skin that way. I pointed it out to my PCP 2 weeks ago at our regular appointment and he said he couldn’t really see anything, as he was rushing out the door, but to get some Hydrocortisone ointment and put that on twice a day.

Fast forward to today. Since the rash has gotten progressively bigger regardless of the ointment I got an appointment with the PCP’s Nurse Practitioner today and found out that the rash is Shingles. AND, had I come in 2 weeks ago they may have been able to do something about the outbreak!
Really?
As it is I’m already past the contagious stage and on the mend. It never hurt, aside from a faint tingling/burning sensation now and again.
They called in some medicine at the pharmacy but now we have to wait for approval from the insurance company. Seems they are expecting me to have some pain after all. If it needs pre-approval it sounds expensive.

Just goes to show you, when you get too confident something will come along to try beat you down.

Still sending hugs to all of you fighters out there.

Barbra.

[Kimberly]

#1182735

Wow, so sorry that you are experiencing this – and that your PCP didn’t catch this in the early stages. That’s good, though, that you are not experiencing any pain. Hoping that you can kick this latest setback super quickly!

[barbra]

#1182736

Hi Kimberly,

Yes, I have been lucky that there is no pain so far, but the Nurse Practitioner put me on Amitriptyline 25 MG anyway. I asked her if I should wait to see if there is going to be any pain and she insisted that I start taking the pills right away. One at bedtime about the same time each evening for 90 days. My insurance has decided that they won’t pay for it, but it’s not expensive so I’m paying myself. And just as I have gotten off the Ambien!

And why are those meds called Antidepressants if they make you drowsy, dizzy and depressed?

Hugs.
Barbra.

[Kimberly]

#1182737

Hello – The low-dose antidepressants seem to be fairly commonly used for shingles, but if you have any questions about whether you really need to be on them, don’t be afraid to insist on seeing the doctor instead of your NP. Here’s some info from UpToDate:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.uptodate.com/contents/shingles-beyond-the-basics

Hoping that you can *stay* pain-free!

[Raspberry]

#1182738

I’m glad it wasn’t worse Barbra! GD sure leads to some freaky things at times and the doc needs to stop rushing out the door so fast!

[barbra]

#1182739

Hi Kimberly and Raspberry,

Thanks for the information and the kind words, it was very helpful.

I took the first Amitriptyline pill on the 4th at 11:00 PM since I had places to go and people to chauffeur around before that and did not want to ruin the holiday.
Woke up on the morning of the 5th at 9:30 AM, having slept right through the alarm to take my Synthroid. And everything went downhill from there. I had one of the most miserable days I can remember, could hardly hold my eyes open, had a headache and took 2 very long naps. The effect of the antidepressant did not wear off until 7:00 PM. I don’t even want to hear something like: When you get used to it it’ll get better or you’ll change your mind when you get pain from the Shingles. Maybe, but probably not. I can’t see me living in this kind of stupor for 90 days.
So, tomorrow I’ll call the PCP, who may even be back from vacation, and tell him or his Nurse Practitioner, all about where they can stick those pills.

And I feel very sorry for all the people who have to take antidepressants for whatever reasons.

Hugs,
Barbra.

[snelsen]

#1182740

Hi, PLEASE ask on of your caregivers their thoughts on taking acyclovir for shingles. Maybe you have had it long enough that it mayday not be helpful for you now. That is THE medication for shingles. It’s in varicella zoster family. a member of the herpes family. like chicken pox and cold sores.

And I suggest you consider getting the shingles vaccine. Depends on your age, though. Or at least have a discussion about it. Shingles can be terrible.

I totally agree with you about where to “stick” the Amitriptyline!

I like the following website. the one Kimberly mentioned is also very good.
http://www.cdc.gov/shingles/about/prevention-treatment.html

Shingles is not contagious, with one exception, but if a person has never had chicken pox, they are vulnerable to the virus. You can read about this on Kimberly’s website. AND your caregivers should know this stuff! (:
Shirley

[flora]

#1182741

Hi Barbra,
Just a quick note of encouragement from a fellow Shingles Survivor. I, too, went through the “what could this burning rash on my forehead, and on my scalp be?” stuff. Although fortunately, my case was mild (just those two sites), it was still no fun, and those hideous black crusty scabs that formed, never failed to stop anyone I was talking to, in mid-sentence, if the wind blew my bangs off my face
Finally, after what seemed forever, they went away, leaving me with just a faint “pox mark” on my forehead – which I conceal with my bangs! Hope yours clear up soon, too.
Flora

[barbra]

#1182742

Hey Shirley and Flora,

By the time the Shingles were finally diagnosed I was well past the 72 hours for any medicine to cut them short or stop them all together. My PCP had a chance but didn’t look close enough and missed it.
When I went back 2 weeks later because the rash had increased somewhat it was all set and done. The rash is not very big, has crusted over and has not caused me any pain so far.
The funny thing is that about a year ago my PCP gave me a prescription for a Shingles shot. The only pharmacy in all of Hagerstown, MD that gave the shot wanted $91.00 and another $25.00 to administer it. And that was after insurance! Needless to say, I told them if I had that kind of money to waste I would take it to the casino in Charlestown, WV and throw it into the slots. And who the heck would get Shingles anyway?
Well, I guess the joke is on me.
Luckily, it’s a very mild case and I’m hoping that it’s a one-time happening.

Thanks for all your help and support, everyone.

Hugs,
Barbra.

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