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Shingles Vaccine and Polymyalgia Rheumatica/Prednisolone

Posted , 8 users are following.

davidmelville
davidmelville

Hello again everybody,

I have just been booked by the Doctors Surgery for a shingles vaccine BUT I thought I would look on the internet for suitability. Perhaps not to my surprise I find heavy advice against it against various strengths. 

Whilst the big no is to 20mg a day or long term users I am now concerned . . . .

I am on 12.5mg per day and have worked my way down over two fragile years with a number of relapses. I consider myself to vulnerable!

What are the thoughts?

 

2 likes, 19 replies

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  • EileenH
    EileenH davidmelville

    Posted

    Given the vagaries of PMR I think I would also be a bit reticent. Anything that messes with a seriously dodgy immune system has to be a bit suspect.

    I'm not saying no - I'm saying I'm not sure. And I'd certainly wait until I had done plenty of research. 

    We have talked about this before but I honestly can't remember what conclusion we came to. Maybe someone else will remember - in the meantime, I shall go and look. 

  • EileenH
    EileenH davidmelville

    Posted

    NO - I wouldn't risk the shingles vaccine. Here's my evidence plus a few points about how it doesn't work too well in older patients anyway:

    I can't give you the direct link but on a site called "virginiahopkinstestkits" There is a quote from Merck ( the makers of Zostavax):

    "According to Merck, the maker of Zostavax, “Serious vaccine-related adverse reactions that have occurred following vaccination with Zostavax include asthma exacerbation and polymyalgia rheumatica [An inflammatory disorder that causes widespread muscle aching and stiffness, primarily in your neck, shoulders, upper arms, thighs and hips, that can last months or even years.] Other serious adverse events reported following vaccination with Zostavax include cardiovascular events (congestive heart failure, pulmonary edema).”

    The Zostavax vaccine can also cause shingles.

    Notice the CDC says that the vaccine is effective for about half the population age 60 to 69, but only provides “some protection” for older groups. As we get older, it’s more difficult for our immune systems to mount an antibody response in response to a vaccine. That’s why the flu shot isn’t very effective for senior citizens."

    You can get a link there for Merck's prescribing info. Google a chunk of the quote and you should get a direct link so you can use it.

    If the manufacturers are admitting this it should be taken seriously.

  • MrsO-UK_Surrey
    MrsO-UK_Surrey davidmelville

    Posted

    David,  I  preferred not to take the risk of having the shingles vaccine.  If you're unlucky enough to succumb to shingles (I did!), it is important to get in quickly with the anti-viral medication which shortens the duration and lessens the risk of any ongoing nerve pain.  Meanwhile, just avoid any youngsters with chickenpox!
  • Whisper2003
    Whisper2003 davidmelville

    Posted

    Can you catch shingles from someone with shingles or chicken pox?
    • EileenH
      EileenH Whisper2003

      Posted

      No. You develop shingles ONLY if you had chicken pox as a child. The virus remains dormant in your body, in the endings of nerves. Something triggers it to revive itself and you develop shingles instead of chicken pox. Someone who has NOT had chicken pox who is in contact with someone with shingles can catch chicken pox though. You don't have to be in contact with someone with chicken pox or shingles for it to come to life though - just being run down is enough sometimes.
  • marykay62062
    marykay62062 davidmelville

    Posted

    My doctor said absolutely not to have the shingles shot. They did give me the flu shot but said it would not be completely effective. Guess we have to cross our fingers and hope for the best.
    • hope4cure
      hope4cure marykay62062

      Posted

      Did UR doc give u a reason for not giving u the Shingles immunization?

      As far as I know some people should not get the vaccine if:

      Anyone has a severe (life-threatening) allergy to any component of the vaccine. 

      Pregnant women or nursing mothers.

      Anyone who is unable to swallow the vaccine tablets whole without chewing them.

      Anyone younger than 17 .

      Or any other severe health treatment such as for cancer treatments or for autoimmune diseases where the immune system is compromised with certain drugs. 

    • EileenH
      EileenH hope4cure

      Posted

      I imagine her doctor had read the prescribing information from the manufacturers that I mentioned in my post further up. If PMR was mentioned as a serious adverse event by the manufacturer it is very likely that PMR can be regarded as a contraindication. 
  • hope4cure
    hope4cure davidmelville

    Posted

    In my humble opinion getting the vaccine is preventive maintenance. Better than waiting to get the Shingles virus.

    It has no cure and is deadly in some cases. The most common complication of shingles is a condition called post-herpetic neuralgia (PHN). People with PHN have severe pain in the areas where they had the shingles rash, even after the rash clears up.

    The pain from shingles herpes voster virus may be severe and debilitating, but it usually resolves in a few weeks or months in most patients. Some people can have nerve pain from for many years. Yet it effects every organ even eyesight.

    Check into the pro & cons with UR doc. U & I are fragile & I n my case I got the virus 

    and then the vaccine to leasson the severity of the flares. So far so good...that was 5 years ago...

    CHEERS

  • davidmelville
    davidmelville

    Posted

    It is interesting that my starting point was really from the Prednisolone perspective as I had read that people on long term useage and those on more than 20mg were at greatest risk.

    After leaving a messages for my Dr he called me and had to look into it and call me back. His said it was 40mg plus a day people who should not have it and went on to recommend I took it as shingles itself is to be avoided.

    I am going to have to go back to him because the bigger question raised by this, especially the Drug Companies own findings are in relation to Polymyalgia Rheumatica.

    • EileenH
      EileenH davidmelville

      Posted

      I would post the extract from Merck's own documentation but I can't get cut and paste to work! However, if you google "Merck prescribing information shingles vaccine" it should come up at the top as "Highlights..." as a pdf. The relevant bit is on page 5, about 2/3 of the way down. There was a PMR case in the vaccine group classified by the investigator as vaccine-related - there was also a PMR case in the placebo group so I have no doubt your GP will pounce on that!

      The reality is though that it only works in about half of patients anyway. The reason it works less well in older patients (over 69 it is usually not given) is that the immune system deteriorates with age and it will not mount the development of the antibodies to the live vaccines (whichI believe this is). Our immune systems are obviously not working properly as we have an autoimmune disorder anyway (the underlying cause of PMR) plus we are on pred. I don't know how old you are - I'm 62 and wouldn't have it.

      If you develop the signs of shingles the other option is immediate use of immunoglobulin which will minimise the course of the illness. 

    • hope4cure
      hope4cure EileenH

      Posted

      Hi 

      I have read the MERK clinical trials. Also many vaccinations r made from mice livers/ kidneys years ago.  There is a lot online about the polio vaccine in research and production of vaccines about the small consentration of molecules getting through the sterile barriers and contain contaminants. That's is the current theory for all the unexplained illness like FM ,rare cancers and more strains of cancers. 

      I have many immune diseases arthritis.. PSA, RA OA.. Psoriasis... The reason to take the vaccination in my case I broke out in shingles early before the vaccine date of recommendation. The docs gave it to me to reduce my flares & symptoms later down the road stating the live vaccine will help my body produce more antigens to fight the disease . Especially since I have autoimmune diseases. So far 5 years down the road I have not experienced another flare from shingles. Knock on wood. The first one attacked my eye and I see double.. I may eventually loose my sight in that eye. So if the vaccine prevent any more damage to my body I'm relieved. That's just my experience..

      flu shots r also available to me. I will always take a yrly shot. I 'd rather not experience any major flares from the flu.  I also have angina and pleurisy.. It could essentially be fatal, if I get a secondary infection from the flu, not to mention two THR HIP implants. Any flu or secondary infection could be fata as well. Every decision is made according to the patients medical history, age and any serious allergies.

      thats just my experience. I hate getting sick.. I feel like I have a light case of the flue all the time anyway. So why risk the consequences. Some just weigh the pros and cons. It's worked for me & for many in my family and friends.

      CHEERS confused

  • hilary70413
    hilary70413 davidmelville

    Posted

    I have had polymyagia for 18 months. Started on 15mg got down to 5 in a year , went to 4mg nad had a flare up- horrible. I then went up to 10 mg and started reducings. 2 months ago I got shingles- worst pain ever. The blisters have gone but I now have PHN. I am on Lyrica ( anti epilepy ) 100 mg twice a day and capsicum crem for my back. So many tables I rattle. My GP suggested reducing my steroid to 5 mg evry other day. So far this seems to work. I even swam 10 lenghts today.

    Anybody know if the shingles virus can knock out  polymalgia . Any thoughts?

    I really want to get rid of steroids so I can have the shingles vaccine as I really do not want to get it again.

     

    • MrsO-UK_Surrey
      MrsO-UK_Surrey hilary70413

      Posted

      Hilary, those of us who have succumbed to shingles whilst on steroids would be more than happy if shingles did in fact "knock out polymyalgia"! It's more likely that the more rest you have had whilst lying low with shingles has helped your PMR pain.  

      The 5mg dose can be a sticking point for many people and one at which we need to slow down the steroidreduction process, remembering that each reduction in dose is a higher percentage drop than the previous one, so our bodies need longer to adapt.  Plus the adrenal glands will be trying to get up to speed with producing their normal pre-steroid amount of cortisol (natural steroid) from 7.5mg and below - whilst that is happening we can have a shortfall of cortisol in our bodies until this natural production catches up.  So a smaller reduction and alonger taper from each new dose to the next is recommended to avoid further flares.

  • hilary70413
    hilary70413 davidmelville

    Posted

    Which way to go. My steroids are down to 2 mg a day - not problesm, just arthritis pain which goes. Shingles is a BIG problem I now have post herpetic neuralgia which is more 5 times  painful that polymyalgia.

    Anit epilepy tables 300mg a day plus capcicum cream- no end in sight.

    I do not want to get shingles again so I am asking GP for the shigles vaccination in a month or so. My steroid dose is well bellow the 40 mg guidlines of NHS precribing.

    Has anyone with Polymyalgia had the shingles jab?

    • EileenH
      EileenH hilary70413

      Posted

      We have been told in the past that it is not a good idea when still taking pred - it is a live vaccine and so contraindicated. Opinions on whether or not that still applies with low doses of pred is disputed. It is only 50% successful in preventing future shingles attacks but is more successful at preventing the PHN.

      The rest has been said above - but I don't think I have come across anyone on pred on the PMR forums who has had the jab. 

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