PMRGCAuk
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Shingles

Hi Everyone,

I’ve been notified by my surgery that I’m eligible for a shingles vaccination. This has been the subject of previous posts so I queried with the nurse practitioner as to whether being on Prednisolone would present a problem. She did show me the guidelines, which referred to the current and recent dosage of Pred - on this basis (currently on 4.5mg daily - the guidelines equate to weekly amounts, by the way) I’m apparently ok. I’m still mulling over whether it’s worth it - does anyone have any views as to whether this is worth having?

42 Replies
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It isn't the pred I see as a problem. The manufacturers list PMR as an adverse event due to the shingles jab. That is enough for me to say "not on your life!"

As to whether it is worth it (ignoring that fact) it depends to some extent how old you are. It works best in your 50s and early 60s and by the time you are 80 doesn't appear to do much at all.

healthunlocked.com/pmrgcauk...

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I wonder to this day if the shingles vaccine I got along with 3 others in one crack brought on pmr. There is now a new one out which I should be getting but I will pass.

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I had a flu jab just before developing GCA, last Nov. Did wonder, but having been convinced that there was no connection, went ahead and had this year's, with no apparent problems. Two days later I had a pneumonia jab (not live vaccine) but after that one had a v red, swollen upper arm and felt ill for a week. Worth it to avoid pneumonia? Have decided against the shingles jab.

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Hi,

I had this discussion with nurse a couple of weeks ago when I had my flu jab. I declined Shingles jab then although I’ve been off Pred for 18months and said I wanted to do some more research.

Same conversation with GP last week, again said I wasn’t sure. His response was “as you’ve had GCA, it may not be as effective as in others, and as you’re going to NZ in 4 weeks wouldn’t have it before, but when you come back if we’ve still got some in stock, might be worth having it then”

My view is, if it’s not likely to be so effective, then why have it, and as I’ve had and recovered from GCA, then why would I risk even the slightest chance of triggering PMR. So I shall decline.

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Hi DL.

I hadn’t realised you had recovered and are off the pred. How long, all in all, did that take? And you tapered the way that you’ve talked about before? Are you completely pain and fatigue free now?

NZ sounds a fab trip. Are you visiting family? Have a great time.

Sue.

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Hi Sue,

Yes took last Pred Sept 2016! GCA lasted about 5.5yrs - I’m sure it went in the April or May of that year, but as I was still at 1.5mg took it really slowly to get to zero. (0.5mg at a time).

Reductions at higher dose were relatively easy, did the “overnight” drop on a monthly basis and although I did feel a bit yukky for a day or two after tapering, no real problems.

Once I got to about 6mg it became a bit harder, so from then on I did 0.5mg and devised my own taper, but I did use the DSNS one for the last leg from 0.5mg to zero!

As you may know I was undiagnosed for 18 months, so I actually took Pred for only 4.5yrs.

Only pain I have it arthritis, do get a bit tired if I’ve done too much, but I guess that’s mainly down to age, but maybe a bit is residual from the GCA.

Have been to NZ before, but it was only a year after my hubby had died and I still had GCA, so I’m really looking forward to returning, it’s my daughter’s 50th birthday 3 days after Christmas. She and her family emigrated 11years ago. Also going to meet up with a couple of NZ PMRers so that will be good as well.

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Thank you for replying so quickly. I have a favour to ask!!!😀😀😀 would you mind, and I know it’s probably been on the site before, but would you talk me through exactly how you dropped from 12.5mg or thereabouts down to your 5 ish and then how did you do it from then?

I would really appreciate your input as I value your experience and advice.

Kindest regards, Sue

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How much was an “overnight”drop?

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See attached, have done from start - had a bit of a glitch when hubby originally very ill, had liver cancer diagnosed and consequently died, not a flare, just raised ESR marked ***

Start dose

80mg - 2 weeks

60mg - 8 weeks

55mg - 2 weeks

50mg - 3 weeks

40mg - 2 weeks

30mg - 3 weeks

25mg - 4 weeks

20mg - 5 weeks

17.5mg - 4 weeks

15mg - 6 weeks (Xmas period)

14mg - 3 weeks

13mg - 4 weeks (1st 4 days @ 13.5mg)

12mg - 10 weeks (1st 4 days @ 12.5mg) *

20mg - 2 weeks

17.5mg - 2 weeks

15mg - 2 weeks ***

17.5mg - 4 weeks***

25mg - 3 weeks ***

20mg - 4 weeks (slow taper)

15mg - 6 weeks (slow taper) - changed surgeries

14mg - 2 weeks

13mg - 9 weeks (Xmas)

*** this bit of more interest

12mg - 10 weeks (slow taper from now on)

10mg - 3 weeks

9mg - 6 weeks

8mg - 6 weeks

7mg - 6 weeks

6.5mg - 6 weeks

6mg - 12 weeks (visit to NZ)

5.5mg - 6 weeks

5mg - 8 weeks

4.5mg - 6 weeks

4mg - 10 weeks (unexplained neck/back pain)

3.5mg - 5 weeks

3mg - 9 weeks

2.5mg - 6 weeks

2mg - 5 weeks

1.5mg - 6 weeks

1mg - 4 weeks

0.5mg - 16 weeks (couple of false starts, plus holiday)

Zero

As you can see I took it very slowly from 10mg down, in time and by dose. It really is the only way from a GCA/PMR prospective as well as adrenal glands.

The earlier “overnight” drops varied from 20mg to 2.5mg, with three of 10mg & 5mgs

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That is great. Thank you so much, I will be following this. I’m interested to know why you were started with 80mg? Sue

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Hi,

because I had been undiagnosed for 18months the inflammation caused by the underlying GCA had got so far around the blood vessels in my head causing the optic nerve to be starved of blood and I lost sight in right eye. The 80mg was deemed to be the correct amount to stop me losing the sight in my left one as well - fortunately it was, but they weren’t 100% sure until until 2 weeks had passed.

As for my reductions, my GP and I discussed them every time, based on my symptoms, or lack of them, and blood tests. And although I had no symptoms at the glitch at 12mg first time around, she obviously was worried (understandably as she missed the original diagnosis) so I increased. I know now it was stress related not GCA, but there is no point in taking risks.

After my husband died I changed surgeries, and after a couple of months my new GP left me to my own devises, with the knowledge that I could call him at any time if I needed his input.

As I’ve many said many times, it is only a plan, and you learn to adjust it to suit your circumstances. Like holidays etc. Fortunately I was retired as well, which I know made things easier.

I decided early on, not to rush things, and fortunately I didn't have anyone trying to hassle me (Rheumy for example). Consequently, whether by luck or design I got through without have a flare, and apart from the obvious side effects - raised eye pressure, cataract, slightly raised BP & blood sugars (now normal) I think I had a fairly easy ride.

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Thank you, DL, for all your replies, and your advice. You have had a rough ride and I’m glad that you are at the end of it.

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I had shingles shortly before GCA. Seems some unproven link with this virus! Who knows really? It's your personal choice with great advice from the experts here.

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I got a flu shot a couple of days ago. Just occurred to me that my extreme aches today, really quite bad and out of the blue, could be a reaction? (I never get the flu shot, btw, but some little inner voice told me this year I should.) Is this a normal reaction to the flu shot? Not eligible for shingles vaccine as never had chicken pox.

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Could well be - it isn't the flu, just a reaction and usually goes away in a day or two.

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Could well be, I felt a bit yuk the day after which is unusual. Was talking to my son about it, as he always gets one, and he said the nurse that did his had said more people seemed to be getting a reaction from this year’s jab than is normal.

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I tried to lie on my right side (side which had the injection) last night and after a few minutes the pressure was really painful. I rolled over, of course, and even the weight of the (one) blanket was too much. But I fell asleep anyway, to awaken to such over all discomfort I thought I was entering the tunnel of PMR in earnest once again. But I now expect tomorrow to be much better. If this flu shot really does trigger a real flare I'm never going to have another one.

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Hello Heron - well, I don’t want to speak too soon but I had the flu shot earlier this week and haven’t had any adverse reaction to that (yet!). My wife, on the other hand, had quite a sore arm. Anyway - I think I’ll quit while I’m ahead and leave the shingles jab this time.... Best Wishes

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Hi,

They have to develop a new vaccine every year, so one’s reaction to it may vary. This year’s one may be particularly potent, I read in today’s paper that the experts are worried because this year’s flu (supposedly from Australia & New Zealand) is particularly virulent. So the vaccine may be more powerful that usual ..just a thought.

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Errr DL - aren’t you about to go to NZ....?!

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They'll be over the flu by then, heading into summer:)

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Yes, but as Heron says they’ve finished with it!

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Hello

I agree about the vaccine..

I said just that to my husband.. as I'd had no reaction in previous years to the flu jab until this year.. by that evening I had full blown fly symptoms (really painful/achy limbs and could not move easily) so took to my bed with paracetamol - by the morning all had gone BUT ever since I have a constant feeling of getting a cold that comes to nothing - like sore throat, nuisance catarrh and rosy cheeks like getting a temperature, I take a dose of liquid echinacea when I can't stand it and it always helps. I had my flu jab on 15/9 and these mild symptoms still persist, so I think you're right about the vaccine...

PS the arm was sore and hurt to lie on but not that bad..gone by 2 weeks

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typo re the 'fly' no brain still!

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Was anyone elses different? Usually it is subcutaneous (under the skin) with a small needle. Ours was intramuscular with a bigger needle this year.

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Think it might have been, seemed a little more painful on entry than usual.

Mind I had two cortisone injections a few days later in my shoulder and hip, so it’s all relative!

But both are nice and comfy at the moment so worth it 😊

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Please don’t mention bigger needles PMRPro - there are men on this forum you know........😂

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No worries, SJ says on another thread that they have retired to another room...

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i think mine was normal as i didnt feel athing no adverse reations either lucky for a change||

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Flu jab has varied responses for me over the years. Only year I didn't get it done was swine flu year which knocked me off my feet for nearly 2 weeks and took several months to feel right. Been first in line since then. Usually a bit red and inflamed because of Jab.

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I had shingles about a year after PMR/GCA started not a major problem as started anti virals within hours, the nerve pains later were hell on wheels until I was able to get amitriptyline. Maybe a case of you pays your money and takes your chance? But I wouldn't risk it.

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Wouldn't risk what? Having or not having the vaccine?

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Sorry, pred head. Having the jab.

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I have had PMR since June 2016, came down with shingles Feb. 2017. Dr. told me it was due to taking prednisone, and that I was to wait a year before getting the shingles vaccine.

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Thank you all for your helpful advice - I think I’ll give the shingles jab a miss this time. There doesn’t seem an awful lot to gain and quite a bit to lose in going for it now. Maybe if/when I finally get to the end of the Pred journey...?

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I asked exactly the same this week when I went for my my flu jab - I was told to talk to my dr - so will let you know what he advises. I've had chickenpox and so have all my family but I know shingles is very painful if you get it.

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That’s partly the problem - I’m not sure whether I’ve had chicken-pox or not! (With four brothers and sisters, my dear old mum couldn’t remember who’d had what.....)

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I remember having cpox and have a few small white spot marks still scarred in stomach area. Maybe check for such a scar or two that has just blended into your mental body map as nothing. Same number of children for my mum who never could remember who had what and when.

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I too wonder if a combination of three shots (Shingles, pneumonia, tetanus)given at the same time didn't bring on my PMR. Within a week I was in the ER with a violent case of flu. Six IV's later they put me in isolation because they couldn't figure out why my Sed rate was so high(72) I had never heard of a Sed rate before, and certainly not PMR. While recuperating at home, I had a knitting project I was working on and I remember whenever sitting for a long time, I had a horribly painful time getting up. Thinking it was just a bad residual from the flu, I thought it was normal. This pain everywhere went on for 6months before I went to my Internal Medicine Dr. and told him I thought I must be dying❗️Blood tests- Sed rate 54. He diagnosed me with PMR. Put on 40mg-and magic. This diagnosis was June 2015. I am normally a very athletic healthy woman. Have played tennis since 9years of age. I am now 69 and pushed too hard to go down to 2mg of Prednisone. Was miserable for 8 months. After listening to you all, went up to 5mg about 6 weeks ago and have been in heaven. My rheumatologist told me to stay there for 3 months- Feel like I've been on vacation. Have even been able to play the net again in tennis because am not afraid of being hit in the face because I wouldn't be able to get my arms up fast enough to defend myself. I don't say, "ouch" "ouch" "ouch" when walking up the stairs, and can actually roll over in bed without groaning. I must have been crazy. When I drop again it will be be 1/2mg and using the slow slow method. Boy, have I rambled. Anyway, back to the beginning. I had a case of shingles when in my early 30's(in a very stressful situation),so I wondered about getting that shot to begin with. I think it has been reported many times that having a combo (3 in my case) is NOT recomended for people in their sixties. For me, looking back, I am HIGHLY suspicious that this episode gave me the PMR because of the violent reaction I had sending me to the ER😡 My best to you all and thank you for your kind and thoughtful posts. Remember, don't be afraid of Prednisone. It is our helper in this maze

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It may not have been the only factor - but I'd put good money on it that it was the final straw for an already wobbly but just coping immune system.

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Rokerman - has been known to 'cause' shingles. Highly unlikely that you will develop shingles - so, give it amiss ! For more info,check out shingles vaccine side effects.

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I had never had shingles and got the shingles shot. After the shot I had shingles three times (all on the temple region near the eyes). My immunologist told me there was no reason why a perfectly healthy person should get a flu shot. Now that I know the symptoms quite well, I tell my friends to avoid the shot and instead keep a close eye on anything that could be a symptom and get treated IMMEDIATELY. I always blamed the shingles shot on my PMR because it was after that that I did get that. Also, I blamed in part my dental surgery that took a long time to heal and I read that I should have been treated with longer antibiotics instead of switching me to Prednisone. So there you have it---the culprits.

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