And to go with the above question

[bunnymom]

I have just finished up with a mild case of shingles.

[DorsetLady PMRGCAuk volunteer]

Well that wouldn’t have helped either. Were you treated for that or not?

[bunnymom in reply to DorsetLady]

Yes with an anti viral drug and had already had the vaccine. Dr said the pred kept them from being painful. One good pred effect then. Mostly they were annoying and are drying up. I think that's what got this flare all started. Otherwise everything is pretty calm. I go on a big family vacation to Mexico in 3 weeks so I want to be feeling better.

[DorsetLady PMRGCAuk volunteer in reply to bunnymom]

Yes of course you want to enjoy your holiday - so to that end suggest you try 7mg again for maybe 3-4 days - and then hopefully drop back down as doctor suggested.

Make sure you’ve got special assistance booked if you need it for holiday - and that others realise you may not want to do everything they do!

[PMRpro Ambassador]

Maybe that answers why you feel crummy?

[bunnymom in reply to PMRpro]

I hope so. Not enjoying coping with a flare. It's been awhile since I've felt so bad fortunately.

[pmrgcavictim]

Hello bunnymom. Having had a shingles about 12 years ago I remember well, the itch the soreness and the crusty part at the end. For the 3 months before and 2 month into PMR, I had what I can only describe as a "single shingle" every couple of weeks or so. One would go, followed a few days later by the next one. I have been on Prednisolone 15mg for 4.5 months now, PMR under control, and not a shingle to be found. I hope that's the end of your shingles, and hope PMR is soon under control.

[PMRpro Ambassador in reply to pmrgcavictim]

I just had a google because it occurs to me that if the Zostavax shingles vaccine can trigger shingles and PMR - maybe having shingles can cause symptoms resembling PMR. Unfortunately can't find anything. Or no-one has thought about it!

But after 4+ months at 15mg you should be thinking about reducing the dose slowly. Has your doctor said nothing?

[bunnymom in reply to PMRpro]

When Dr suggested"new" vaccine for shingles I said I thought current vaccine might be responsible for my PMR. He said let's wait awhile and see what side effects are reported. I guess I am now more likely to get a return having had them once.

[pmrgcavictim in reply to PMRpro]

Hello PMRpro, thanks for your comment. The GP started me on 15mg, the change in pain level 6hours after first dose was unbelievable, and I was able to kind of walk, not just slowly hobble along, also able to dress myself the next day. After a week the GP reduced my dose to 10mg. a total disaster early on the third day. Straight back on 15mg then okish the next day. Next GP appointment I was given a prescription for more 5mg tablets plus some 1mg tablets so that I could adjust the dose myself. I tried 14mg and that lasted for a week, then back up to 15mg for a break from the increasing pain. I had a holiday coming up so I stayed on 15mg. Going to try reducing again after next week. I will keep you informed of my progress, hopefully good.

[PMRpro Ambassador in reply to pmrgcavictim]

You need a good month at the 15mg, possibly even 6 weeks:

rcpe.ac.uk/sites/default/fi...

is a good baseline - from a top UK rheumy and his team. Personally I think 1mg at a time is better...

[pmrgcavictim in reply to PMRpro]

Thanks for your reply.

[pmrgcavictim in reply to PMRpro]

Hello PMRpro. Visited my GP 7 days after going from 15mg to 14mg Prednisolone, and mentioned the wrist artery pain, and now Temporal artery pain. Now on 40mg Prednisolone, to be reduced by 5mg every third week till I get down to 20mg. Now waiting for the Opthalmologist appointment, and a Temporal artery biopsy. Something to do when the weather gets cold.

[PMRpro Ambassador in reply to pmrgcavictim]

If you are on 40mg for more than a short time the TAB is very unlikely to show much - so will there be any point in doing it? I would question them about it if there is any delay.

[pmrgcavictim in reply to PMRpro]

Thanks for the reply. Unfortunately I am probably stuck in the system that isn't as wise as our PMR community.

[PMRpro Ambassador in reply to pmrgcavictim]

You still have the option to question - and if you don't in the future you may be put through a lot of things unnecessarily.

Having a negative TAB does NOT mean you don't have GCA, it means they didn't find what they were looking for. The question to ask is whether they are confident it is GCA without the TAB and what will they do if it is negative. If they say they will continue to treat as GCA - why have the TAB? Especially if it will be after more than a couple of weeks of 40mg pred - by which time there will be little or nothing to be seen.

[pmrgcavictim in reply to PMRpro]

Hello again PMRpro, just an update on my PMR/GCA journey. The Rheumy started me on a tapering plan. 40mg for 4 weeks, 35mg for 2weeks, 30mg for 2weeks, 25mg for3weeks, 20mg for3weeks, 15mg for 3weeks, 10mg for6 weeks, then reduce by 1mg every 6weeks to zero. I am still getting Temporal artery tenderness, not painful like it was at first, and pain in both of my wrist arteries, where they check for a pulse. Just to add to the fun, I also have a spare in my right wrist that runs right to left, that hurts too. Wondering if the plan sounds ok to you, or at what point should I modify it, to keep with the true expert advice, to be found on this amazing site. Due for a follow up appointment soon, if one comes. I will be on the phone soon if it doesn't. Trevor.

[PMRpro Ambassador in reply to pmrgcavictim]

It is optimistically fast once you get to 20mg - he is prepared to adjust according to any return of symptoms I hope? Did you get a result with the TAB?

[pmrgcavictim in reply to PMRpro]

Thanks for the reply. That's just what I thought about reaching the 20mg dose. My Rhuemy does listen and seem to understand, so I hope we can work together. Not like some of the other poor souls who have a battle on their hands at every step of the way. When I saw the Opthalmologist he agreed that after so much Pred, it would be a waste of time doing a TAB. He was positive that I also had GCA. Thanks again, Trevor.

[pmrgcavictim in reply to PMRpro]

Rheumy said to go back to the previous dose if a reduction caused any return of symptoms.

[piglette in reply to pmrgcavictim]

Sounds like you have a sensible rheumy. You are lucky!

[PMRpro Ambassador in reply to pmrgcavictim]

Good!

[pmrgcavictim in reply to PMRpro]

Good morning PMRpro, well it is here, we have that bright thing in the sky. I hope it is ok to contact you this way. A week or so ago you replied to one of my comments, which I have spent many hours trying to find,with no luck at all.I had mentioned about having what seemed like an arthritic condition for 40 ish years, and many visits to Rheumies and others and always being told nothing wrong. They never said we will find out what it is. You also gave it a name which I can't remember. If you could find and resend Your reply I would be most thankful. May you have a pain free day. Trevor.

[PMRpro Ambassador in reply to pmrgcavictim]

Is it the reply in this thread?

healthunlocked.com/pmrgcauk...

You can find all your previous posts and your replies to posts if you go to your profile page. To do that click on your name on a post and you will go directly or on the ikon at the top right of the page you are looking at and a menu drops down, Profile is the first option. You will see Posts Replies Followers Following...

I suggested palindromic rheumatism

[pmrgcavictim in reply to PMRpro]

Yes that is it. Thanks for finding it for me, I had just about given up trying to find it. Now I will know how to find things I want to look back at. I'll bookmark it too. Thanks again. Trevor.

[Myosotis in reply to PMRpro]

I had a mild attack of shingles, treated with an antiviral, which lasted about a month and I got PMR straight afterwards. It wasn't diagnosed because the doctors I saw thought it was just a post-shingles muscle stiffness. About a month after that I got GCA. It certainly looked like the shingles had triggered the PMR/GCA.

[PMRpro Ambassador in reply to Myosotis]

It may have been the final insult to the immune system. But there is a group that claim the CP virus is implicated in developing GCA as they have found it in many TAB samples.

[bunnymom in reply to PMRpro]

That is very interesting.

[PMRpro Ambassador in reply to bunnymom]

I should have added it is a single view - and there are some weaknesses in the whole argument. But...