shingles

[kingharold11]

does the shingles jab cause any problems with PMR and steroids

[DorsetLady PMRGCAuk volunteer]

Hi,

You shouldn't have the shingles vaccine if you are on steroids, or have a weakened immune system. Double whammy for us then!

Why do you ask - have you been offered it? Or do you think it might protect you against catching it? Whatever, suggest you give it a miss. Maybe something for the future once you're clear of PMR and off Pred, but not really sure about that.

Hope you're keeping well at moment.

[kingharold11]

Thanks for that its not me actually its my sister who is 8 years older than me and has recently acquired !!!!! PMR the nurses at her doctors have been hassling her to have the jab when she asked the question they didn't answer because they didn't know.

[DorsetLady PMRGCAuk volunteer in reply to kingharold11]

That sounds about right! Don't suppose they said they'd find out for her? Sorry, stupid question.

[PMRpro Ambassador]

There are mixed opinions about the shingles jab - it is live, so officially it is not for people on steroids. However - the expert opinion is that if you are on a moderate dose or lower (under 15-20mg) it is OK. (You pays your money and takes your choice.)

BUT - you say your sister is 8 years older than you. i can't remember if I know how old you are but age also plays a role in how effective the development of the immune response is and if it doesn't work - it was a waste of time. Studies have shown that it works best in people in their 60s and the effect falls off after that:

"Is there an upper age limit for receipt of the zoster vaccine? Local providers are reluctant to give zoster vaccine to persons age 80-plus years.

There is no upper age limit for zoster vaccine. The incidence of herpes zoster increases with increasing age; about 50% of persons living until age 85 years will develop zoster. ACIP recommends the vaccine for everyone age 60 and older, even though the vaccine's efficacy decreases with an increase in the recipient's age. The clinical trials found an approximately 18% efficacy in people age 80 and older as compared with 64% efficacy in people age 60 through 69 years. In general, with increasing age at vaccination, the vaccine is more effective in reducing the severity of zoster and post-herpetic neuralgia than in reducing the occurrence of zoster."

This is from this site : immunize.org/askexperts/exp...

which is aimed at healthcare professionals. They say if a patient is on high dose pred they shouldn't be given the vaccine. They don't define high dose - 20mg certainly is so it will depend what dose your sister is on. They don't class methotrexate as immunosuppressant - but repeatedly say an immunocompromised patient shouldn't be given the jab. And yet we are told by some doctors that we are on immunosuppressant drugs. They can't have it all ways!

Overall: it is only 64% effective in your 60s - and by 80+ it is less than 20% effective (I think these figures are not for preventing shingles developing but for the improvement in post-herpetic neuralgia but I might be wrong). If you are 80 you have a 50/50 chance of developing shingles. Being on any dose of pred is likely to reduce the effectiveness even further.

So is the risk of a live vaccine when on pred worth it I ask myself?

[kingharold11 in reply to PMRpro]

I am 70 and my sister is 78 at the moment she is on 9 mg of pred her doctor is reasonably on the ball with her PMR but the nurses at the surgery don't appear to have a clue when she asked they said they would find out and ring her back and then didn't (typical or what) she remembered me saying stuff re chicken pox and shingles when I first was diagnosed with PMR hence the query.

[PMRpro Ambassador in reply to kingharold11]

Well if it were me I'd tell the nurses I want to hear from the doctor first! I think really it is her decision - she's at that top end where the jab isn't that effective anyway but the pred dose is probably OK. But then - you never know do you? Don't think i would bother somehow.

[kingharold11 in reply to PMRpro]

thats basically the conclusion we came to between us I shan't bother with it either thanks everybody for your help

[FSP25 in reply to PMRpro]

Dear PMRpro

I hope you won' think me impertinent. I realise you are a fellow sufferer but are you also a member of the medical profession? I read with interest your comments on the shingles vaccine and am about to cancel my appointment to have it tomorrow as I am having a bad flare and on 30mg Pred as mentioned in my first post. Thank you for your good advice about this. I don't want to take any chaces.

[PMRpro Ambassador in reply to FSP25]

Not a doctor no - decided that wasn't for me after all and boy, am I glad it did! I worked in the NHS for some years in various fields including the labs and alongside my husband as a research technician, he's a medical physicist. I have a physiology degree and have worked in the medical/pharmaceutical/science field as a translator for over 30 years. You learn a lot of background stuff doing that and I can read a publication as well as the next person.

No - at 30mg I don't think I'd be having the jab and I certainly wouldn't during a flare!

[FSP25 in reply to FSP25]

Thank you for all that. I realised that you are very knowledgable about this condition which is why I thought you might be a doctor. I really appreciate all the information that you post. It makes me feel less 'odd' and more like many other people who have PMR. I am not having the vaccine!

[Marymon in reply to PMRpro]

I was offered a Shingles vacc. from the surgery, they referred to my history of allergy, penicillin, pollen, and said the only reaction I might get would be redness around injection, !!! during the following week I developed the redness, followed by a rash on my arm and on my other side I had rash down my side and wealds behind my knee. I was very tired and over the following week pain started in my neck, shoulder, and hips.

After six weeks the rash receeded, but the pain and stiffness had increased so much that I rang for appintment, and when offered one in three weeks time, I described my symptoms and started after Shingles vacc. I was given an immediate appointment.

Result PMR diagnosed and put on 15mg, and then had a blood test, result in a week. So, I am waiting until then, to ask WHY is NHS giving this vaccination without been open about the risks. I am 78 and was feeling fine, after having had a knee replacement last September. I thought I was doing the right thing to by having the jab It seems at my age not much use anyway.

I am furious, after having read the awful pain and side effects many suffer, to contract PMR as a result of this injection when Merck themselves list it as a side effect, and not be told.

I am now on my third day of Prednisolone, and the pain and stiffness have improved. Now to wait to see result of blood test, I was told a Dexa scan would done.

Tomorrow I will be buying calcium and Vit. D tablets.

Thank you all for most informative posts, I wish you all well.

[PMRpro Ambassador in reply to Marymon]

Your GP should be handing out the calcium/vit D on script. They are required because of the pred - they aren't just supplements for no reason.

I know - the lack of knowledge on the part of the people pushing this stuff is appalling. But they have been bamboozled by a load of guff from the marketing people - and appear not to know how to distinguish good from bad.

[Marymon in reply to PMRpro]

Thanks for tip on Calcium and Vit D on prescription.

Surely they should be highlighting the possible reactions. Not just possible redness around the injection, I wouldn't have gone ahead with it if I was aware, saved me a lot of pain, and health service unnecessary money The NHS seems to be targeting people like me who are not going to get much good from it anyway. There are many problems that can come with age, without being them.

Your link to Merck makes interesting reading, have health professionals read it I wonder? time they did.

Well, I will see what Friday brings, I hope GP has more to say on treatment, I know I Have plenty to say to him.

[PMRpro Ambassador in reply to Marymon]

Probably not! They don't read much these days - mostly because they don't have the time.

What really did annoy me was the concept of "catching up" by vaccinating an age group where the beneficial effect is minimal. What a waste of money!

[Marymon in reply to PMRpro]

I know GPs are overstretched, and do not intend to rant at him, but who makes the choices to provide them, it is it NICE, if so, they are the ones at fault, especially when you read of drugs they refuse to provide for reasons of cost.

But, will make my point to GP, although I realise Practise is only following NHS.

[PMRpro Ambassador]

I had totally forgotten that I found this bit of info well over a year ago when the same question was asked and wrote a post about it:

"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."

[HeronNS]

There's a new shingles vaccine now, called Shingrix, which is made from killed virus. My husband had a shot last week and developed fairly severe flulike symptoms (body aches) which lasted about a day, as well as a very red patch on the arm, which now looks like an ordinary, although fairly large, bruise. Not having had chicken pox I wouldn't let him get the Zostavax vaccine as I thought it could put me at risk. Now I think it might not be a bad idea to phase out the use of Zostavax, at least in the elderly, as Shingrix is supposed to be very much more effective in creating immunity, and shouldn't have the same risks as a live vaccine has in exposing the unwary, or causing the disease being vaccinated against. You have to have two doses of Shingrix, the second within two to four months of the original shot.

[PMRpro Ambassador in reply to HeronNS]

Yeah - but they said much the same with the Zostavax. It shouldn't cause CP no - but it is still to trigger the immune system to do something and the effect there can't be that different. I shall wait and see...

[HeronNS in reply to PMRpro]

I don't think a killed virus could give me chicken pox, which was my concern. I don't know about shingles in people who've already had CP. As you said, time will tell!