Some of you may get 2 separate posts from me. I was typing and somehow lost my update. Ugh how I hate computers at times. Anyway my pain (year 3) is my right trunk, shoulder and numbness and tingling in the right side of my face.
Don’t want to retype right now what I just lost. Any type of repetitive motion can set the pain off. I also have pronounced allodynia. Can’t wear a bra. Wardrobe options are very limited.
What are people being advised re Shingrix? I was vaccinated about 7 years ago with the old vaccine. My NP didn’t know how to advise me several months ago when I asked about getting the new vaccine.
Part of my treatment is 400 mg of Lyrica daily, for almost 2 yrs.
For those of you taking it, what has your experience been? Brain fog and fatigue for me but I think it does ease the pain. Last few months hair loss. But that could be to the different antidepressants I tried. Can’t take them, terrible nausea. That on top of the PHN pain was close to unbearable.
Anyway, as always my heart goes out to all of us who suffer. Especially you younger folks still in the workforce and/or trying to raise a family.
Hi,
I work with a shingles and PHN research group and by no means am I close to being an expert. I feel for you folks with complications caused by shingles like PHN. The vaccines were designed to prevent shingles. They weren't designed to treat PHN once you have it.
This is from: MMWR, January 26, 2018, Vol 67, #3
Update on Recommendations for Use of Herpes Zoster Vaccine
Obtained from the CDC site at: https://www.cdc.gov/vaccines/hcp/acip-recs/vacc-specific/shingles.html
"In October 2017, the Advisory Committee on Immunization Practices (ACIP) made the following three recommendations: 1. Recombinant zoster vaccine (RZV) is recommended for the prevention of herpes zoster and related complications for immunocompetent adults aged ≥50 years. 2. RZV is recommended for the prevention of herpes z o s t e r a n d r e l a t e d c o m p l i c a t i o n s f o r immunocompetent adults who previously received zoster vaccine live (ZVL). 3. RZV is preferred over ZVL for the prevention of herpes zoster and related complications. These recommendations serve as a supplement to the existing recommendations for the use of ZVL in immunocompetent adults aged ≥60 years." "Based on expert opinion, RZV should not be given <2 months after receipt of ZVL."
Bottom line is that in the U.S., one can receive the RZV vaccine (Shingrix) to prevent shingles if they qualify, ie., age, immunocompetent, at least 2 months since receiving ZVL vaccine (Zostavax), etc. I don't know if health insurance covers. Check with your doctor. Hope this helps.
Donna
I have been advised by my doc to get the new vaccine, even though I had received the older vaccine a few years ago. The new vaccine is far more effective.
I also have the allodynia in much the same place as you. Going on 2 years. That has really pretty much done in any social life. I can not tolerate clothing from the waist up. Fortunately I live alone in a retirement community. The little I can go out with a bra on is only with a 5% pain patch on the worst spot. Anyway to answer your question, I did get the new shingles shot after much questioning many health care professionals. They all said go for it. I don’t want to get this again. Alittle sore arm for a day and that was pretty much it. That was 3 weeks ago. I will go for the second shot in about 4-5 months. I am in the US. Good luck to you whatever you do do. Do you still feel it may go away eventually??. I could only hope!
Thanks so much for your providing this information. I did skim through the report and it sounds like those of us who have had shingles and then PHN should get the new Shingrix vaccination.
That is correct Jeaneen. Shingrix is recommended whether you have had Zostavax or not, and whether you have had shingles with or without PHN or not. Best of health to you. Donna
Hi there. I know u have been dealing with PHN for many years and have done lots of research. Are you planning on getting the Shingrix vaccine? Thanks in advance for any feedback.
I already got the first shot. It is a series of 2 shots. The second to be given 2-6 months later. I certainly don’t want shingles again. I had the first vaccine about 8 years ago and still got shingles. Now nasty PHN. After the second shot , this new one is said to be 90% effective. No side effects. Get the shot!
Yes I plan to get the Shingrix vaccine. Last I checked it was sold out here, so I’ll go back and check again soon. I have not found a doc who does not recommend it. Side effects are generally soreness in the arm. Not a big deal compared to another bout of shingles and maybe additional PHN.
Called my local Walmart pharmacy yesterday. They have the Shingrix in stock and my insurance will cover it with only a $15 co-pay. Can’t really articulate why, but I am anxious about getting it. And I intellectually know that getting the vaccine years ago, had nothing with my getting shingles in the first place and then PHN.So I will get the first shot soon. Thanks for your feedback.