LUPUS UK
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Beware of Shingles (Shingrix) vaccine!

I had an appointment with my Rheumatologist a couple of weeks ago and she advised me to have a Shingles vaccine. She said the new one is ok for people with Lupus. My brother in law had recently had Shingles and it was terrible for him so I thought, ok, I'll do it. Now, 2 weeks later, I am pretty sure I have Shingles on my forehead, scalp and eye. (I am hoping to see the Dr. today for diagnosis.) So far, it's not as bad as I've heard it can be so I am hoping it's a mild case but wondering if I even would have contracted it if I hadn't had the vaccine?! All this to say...be wary of getting this particular vaccine. I had done minimal research before agreeing to it; now I wish I had waited. In the last few days, I found out that there's not a lot of data available on lupus patients who are on biologics getting this vaccine. I am on Benlysta, a biologic(!) and my doctor knows that! Ugh. As soon as this is over, I am going to get a new doctor.

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Are you on the antiviral? You should be ASAP. Call your GP.

Thanks for posting. I have been wondering about the vaccine. I haven't had it and the part about "enhancing" the immune system didn't seem good for a lupus person.

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I thought about my reply, and did a quick google. Skin rash can be a side effect of the vaccine. I hope that is what happening.

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Thanks, me too! Both my primary doc and my Rheumatologist are out for the week for vacation! Seeing someone new this afternoon, I am hopeful for a good report and an effective prescription.

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That's concerning. As far as I understand it, the Shingrix vaccine can't give you shingles if you've never had chicken pox, as it is made of just one of the envelope proteins of the virus plus a couple of enhancers. So none of the virus genetic material is put into your system, either dead or 'alive'.

But as you say, it is said to provoke a vigorous immune response so that could definitely be a worry. And according to a press release in February of this year, when Shringrix was released,

"The CDC's Advisory Committee on Immunization Practices hasn't confirmed whether the vaccine is safe for people who have a weakened immune system because of a disease or medicine they take. One worry is that taking drugs that weaken the immune system might make the shingles vaccine less effective. It's also possible that by stimulating the immune system, Shingrix could worsen certain diseases, like leukemia."

Please do post again after your consultation. I've just started on azathioprine and was told to get the shingles vaccine, so I've got extra incentive! x

EDIT: I've just checked the Public Health England green book guidance on vaccinations - there appears to be no guidance on Shingrix as yet

I wonder if Paul_Howard could comment?

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As far as I know, the new vaccine is not yet approved for use in Europe. It's very new.

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The situation is a bit confusing. According to GSK news bulletins, Shingrix gained a licence in the US last October, and in Europe in March this year. However, Public Health England has issued no guidance about it, and it has not yet appeared in the Green Book. At least one private clinic in the UK is advertising that Shingrix is not currently available in the UK, but will be 'later in the year'.

I gather there may be a complicating factor that supplies have been rapidly depleted thanks to a bigger than anticipated uptake in the US.

So I'd be very surprised if anyone can get it in the UK right now, but have no idea about anywhere else outside the US x

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As far as I know, getting a licence isn't the same as being approved for use by the healthcare systems. Private use is a different matter - then it relies on supplies...

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Hi whisperit,

I'm afraid that at the moment I cannot find any helpful information about this vaccine in the UK, especially relating to its use in people with lupus. As I am not medically qualified I cannot give any advice myself. I will keep an eye out for any news about this though.

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Thanks Paul x

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Great discussion. Thanks for posting, ecough. This subject is pretty much always on my mind cause one of my other primaries is a Primary Immunodeficiency Disease (PID) and one of my daily therapeutic lupus meds is Mycophenolate, and cause yesterday on my facebook feed i was reading this post, below, on this subject by the well know lupus expert rheumatologist Dr Don Thomas MD, author of the invaluable The Lupus Encyclopedia, published by John Hopkins Press...the last para in his post discusses Shingrix...i first discovered The Lupus Encyclopedia thanks to our Paul Howard at LUK head office

Hope you’ll let us know what your doctors say, and how you’re getting on...glad you’re taking good care of yourself

🍀🍀🍀🍀 Coco

If you have #lupus, make sure to get a shingles shot as per the below:

1st: This is a photo of one of my young patients who called me a couple of weeks ago, "I have an itchy rash I think is from one of my medicines, can you call me in something for the itching?" My answer... "we must have you come in and see it to know what it is and what to do." I saw her the next day. It was not only itchy, but it was also giving her an excruciating burning pain "like a hot iron on the skin."

Physical exam showed classic shingles (herpes zoster) due to the chicken pox virus.

As an interesting factoid. I know that in her case the chicken pox virus that became activated was living in the spinal nerve (dorsal root ganglion) situated between the 3rd and 4th thoracic spine level (the T3 nerve and dermatome). This is the nerve that affects the skin of the armpit and stretches in a band from the back the breastbone just above the nipple (T4 involves the nipple).

2nd: Bottom line point. Lupus patients are 3 times more likely to get shingles than "normal" old people, and this is in all age groups! Not only is it incredibly painful, but it can be deadly. I, unfortunately, had seen a patient who died from shingles a few weeks ago because it attacked her brain.

3rd: Please get vaccinated now if you are not already using the following criteria:

- If you are not on a strong immunosuppressant (e.g., a biologic CellCept, Cytoxan, Arava, prednisone over 20 mg a day, Xeljanz), please get the Zostrix live shingles vaccine. It is OK to be on methotrexate, Imuran, Plaquenil, quinacrine, low dose steroids, and chloroquine. Just walk into your local pharmacy and say, " I want the Zostavax." ... reference (one of many) = This is a formal recommendation of the Centers for Disease Control and the American College of Rheumatology ... : ncbi.nlm.nih.gov/pmc/articl... (Read the section that states "HZ vaccine recommendation")... Of course, please ask your rheumatologist first as everyone's case is different... but most lupus patients who are not on the stronger medications should get Zostavax.

As an aside, an infectious disease expert and rheumatologist are currently performing a multicenter study with Zostavax, giving it to patients who are on biologics... so far, they are not seeing any problems at all... they are optimistic that Zostavax may be actually safe in all of our patients... but we await their final study results

- Please do not get the newer, better Shingrix shingles shot yet. Why? It works so incredibly well (97% efficacy rate) that we are nervous that it may make lupus immune systems so active that lupus patients could possibly have a lupus flare. Hopefully, we will know if it is safe or not in a couple of years. I sure hope so, because it is such a good vaccine. I ran to the pharmacy to get mine as soon as it was available!

SHARE this incredibly valuable information with everyone who has lupus

by Don Thomas, MD

buff.ly/1USewmo

lupusencyclopedia.com

lupusencyclopedia@gmail.com

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I wonder what the situation is for OTHER a/i disorders??????

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Exactly!!!!!!!

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That's a very important post, thank you, coco x

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You’re totally welcome. Underlines the value of keeping up with our USA lupus community (& as many other countires’ immune dyfunction & connective tissue disorder communities as poss). My cognitive function is still under pressure due to these ongoing feeding issues multidiscipline investigations, so my thinking power is pretty wobbly (the latest adventure when gastroenterology’s recent endoscopy video capsule got stuck for 12 days rather set off my hyperreactivity, which always takes a big cognitive toll) but even so a bell rang when i saw Shingrix in ecough’s post title! XOXO

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Video capsules stuck in your insides...!....I was thinking last week, as I went from EMG to sleep study to the phlebotomist, that this is a life from a magic realist novel....how can we tell which bits are real and which magic? x

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OMG: Too True!

If i had the cognitive Umph, i’d have posted about this sci fi endoscopy adventure, inc a pic of the capsule (which now lives in our collection of curiosities) i will eventually...XOXO

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I was shown some of my recent MRI pix this morning. Like looking at myself incarnated as a ghost....or transformed into a mummified pharaoh...hope to read your Fantastic Voyage soon. Raquel Welch starring again, of course?

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DEFINITELY!!!!!!

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Great info, Coco & everyone else. I have an obscure question for you. When I was tested for CVID, I noticed my titers to Chicken pox were very high compared to any other titers for diseases. I had it when it when I was 3. I've wondered if I wouldn't be covered by the antibodies I have. If you haven't a clue, but I thought I'd ask just in case, which is another reason I've been dragging my feet on the shingles vaccine. My neighbor has had a terrible time with shingles recently.

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Good question...i have simply been “not thinking” about my risk....i haven’t pressed immunology on this subject....i had CP when i was little....if i find anything interesting out, i’ll get back to you...meanwhile am just hoping we don’t get shingles (meaning none of us)!

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I just got back from my doctor's appointment. It is indeed Shingles. She gave me a script for Valacyclovir (anti-viral.) I can't take my Plaquenil while I'm on it. She wants me to check with my Rheumatologist to make sure. I am confused by all of this. The only thing I can think of is that I must have had a mild flare going on that I was unaware of when I got the vaccine. Thanks, everyone, for your positive and encouraging replies!

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Do make sure that an adverse event report goes in. That is the way they find the REAL rate of adverse effects - and obviously they MUST consider that MAYBE the effect on the immune system in compromised patients is not ideal...

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Very sorry to hear that, but so glad you posted about it here. You may have saved quite a few others from a lot of problems. Get well soon! x

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Hi ecough. So sorry that you are unwell. I have not had any vaccination for shingles myself, but l think sadly that the timing of you developing shingles is possibly pure coincidence. You said that your brother in law has recently had shingles and that he had it really bad, if you had spent anytime with him mainly before his shingles erupted then you could well have been infected then, there is an incubation period of 10 - 14 days before spots erupt. Sadly l think that we are all at risk of developing shingles due to immune issues and some medications. I work in a Prep School and have had shingles twice in the past two years with a possible third bout earlier in the year, each time not as bad as the first, that was really painful ! Hopefully your doctor will prescribe Aciclovor think l have spelt that right lol which is an antiviral, it helps clear up shingles quite quickly. Get well soon x

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You do not catch shingles from someone else. Shingles is due to the reactivation of the dormant virus left in the body after an earlier (usually childhood) infection with chickenpox. No-one really knows what it is that triggers the reactivation, possibly something affecting the immune system. Which fits with the concept of the new shingles vaccine having some effect on the immune system - in this case of already immuno-compromised people.

The 14+ day incubation period you mention is for chickenpox - theoretically it is possible to catch chickenpox from someone who has shingles. In practice this is very very rare since you would have to be in contact with the fluid in the shingles rash.

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I never had chickenpox. I wonder if that was the reason I got the Shingles after vaccination? I think I saw something about that in my research. (Sorry, I've read so much in the past days, it's all a blur!)

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You possibly DID have CP as a child but never noticed, it is quite common. The new vaccine should not be able to CAUSE CP as it has no live virus in it. Only the live virus could cause a problem - even if attentuated (weakened). All the more reason though to report it as an adverse event.

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Hi PMRpro.

I was not actually saying that you could catch shingles from shingles, what l was trying to get across was that if you are immune compromised and come into contact with someone that has the CP virus then it is more likely that you can get shingles, obviously if you have not had CP then you are more likely to get either CP or shingles. As l said l work in a prep school as the school nurse so come into contact with children who do have such things as CP hence why l have had it at least 3 times now but each time not as bad as the first time. Viruses are spread not only by physical contact but can be airborne . The incubation period for either CP or shingles is 10 - 14 days after contact if you low immunity that ditty is from my Rheumy consultant !

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I'm sorry - but that was how I understood this: "if you had spent anytime with him mainly before his shingles erupted then you could well have been infected then, there is an incubation period of 10 - 14 days before spots erupt". If you haven't had CP you CANNOT develop shingles, you cannot "catch" it, and it is very unusual to have CP more than once - although if you are immunocompromised you may have it more than once having not developed antibodies.

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My Husband had shingles and I rang to ask my Rheumy if I should get the vaccine and she said, and I quote, "Not under any circumstances". Two opposite pieces of advice from your Rheumy & mine! I am on Rituximab (Biological), a tapering dose of Prednisolone (down to 3mg a day) Hydroxy & Lefludomide.

As it happens I actually got shingles, but I only got a mild dose and it seemed to be gone in 3 weeks - well at least the pain. The small rash on lower jawbone and neck took another 3 weeks to clear.

It is so confusing but you just have to go with your gut on things I find, because doctors have so many differing views.

I wish you luck!

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I would not get a new rheumatologist on that basis. All of medicine is based on risk versus reward. My doctor told me to get the vaccine too. When I asked if it could be a problem, he answered that there is always that potential with vaccines in patients with autoimmune disease but the benefit outweighs the risk. I am very sorry you had a bad reaction. I know your doctor will be too. They have to do what is medically advised at a given time.

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I have other reasons for getting a new rheumatologist. I've only seen her twice and the second time she saw me, she wanted to lower my Plaquenil dose, based on new research, in spite of the fact that my labs show consistently normal results. After this episode, I do not have any confidence in her. I feel very "un-cared for", if that makes sense. I know that doctors aren't perfect and things will happen but there are just too many red flags for me to continue with her.

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Absolutely NO vaccinations are safe if you have lupus. Vaccinations are made to activate an immune response! The very thing your doctor is supposed to stop from happening! So sorry this happened!

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If you have lupus say no to vaccinations and the CDC knows this it is on their website! Google "Who Should Not Be Vacinated". You are one of them states the CDC! Not just me!

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I was warned not to have this injection as it is classed as a live injection by a pharmacist at our local Lupus information day! As it is a live vaccine x

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This exact same thing happened to a friend of mine. She now has a permanent bald spot from the shingles which is now some sort of psoriasis. Thank you for the warning. You've just saved many of us a lot of grief that we don't need.

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Oh my! At my mid-April annual physical, my GP recommended that I get the shingles vaccine. I don’t know which one he meant (zostavax or shingrix) but after reading this discussion, I think I will wait for further data on the matter. Last thing I need is a bad immune response or worse, shingles itself!

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