PMRGCAuk
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New member from New Zealand

New member from New Zealand

Kia ora (Hello), my name is Di and I live in Nelson, New Zealand.

I was diagnosed with PMG in 2015 and 3 months ago with atypical GCA. This manifests as blockages in my subclavian arteries so I get significant claudication pain in both arms. Worked up from 60 to 100mg pred and was on that for 8 weeks with no improvement but also no deterioration. Now reducing.

How I wish I had had Kate's book when I was diagnosed with PMG as I had no idea about GCA. In April this year I developed jaw pain and realised it might be GCA and went to Emergency department. Then in July I couldn't feel any pulses in my wrists and returned once again saying I thought I had GCA but this was denied both times.

Since then I have learned to trust myself and taken control of my care and condition.

I finally got a diagnosis on biopsy in December so at least know what I am dealing with.

I am now on 60mg prednisone and also cyclophosphamide with a view to getting TZB as it is a requirement here in NZ to have tried these things first. I am a little reluctant given the side effects and toxicity but at $20,000 a year to pay myself feel I have no choice. I am also getting a second opinion so I have another perspective.

Kate's book has been life changing. I feel validated and hopeful with great new ideas.

The photo is with my grand-daughter Imogen Diana now 17 months old and living next door to me with my daughter Megan. Such a joy they are.

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Hi dirussell,

Lovely picture. I’m currently in NZ on holiday with my daughter and her family, she lives near Methven on the South Island but we’ve been around a bit including North Island. Really enjoying your beautiful country.

Sorry to hear about your GCA, I also had that for 5&1/2 yrs, now in remission, so I wish you well. I was never on TZB so can’t advise but there others on her who are on it, so hopefully they’ll be along when the rest of the world wakes up!

Take care, and keep well.

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Hi and thank you for your good wishes. I am encouraged by your remission and wonder how you define this? Another area of controversy.

I'm glad you are enjoying NZ and your family and that you are well enough to do this. I know my husband is worried that the GCA will curtail our travel plans but I remain hopeful!

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Hi again,

I came to NZ first 3 years ago when I still still on 7mg of Pred, and have done various trips within Uk and Europe (albeit not on very high doses).

Once you feel a bit better in yourself and the inflammation from the GCA is well controlled then travelling it not so much of a problem. You just need to do a bit more planning beforehand, build in rest periods, recognise that holidays may be less frenetic than they used to be (not a bad thing), and ask for assistance whether than be at airports (even for internal flight), ferries or what. It does seem a bit of an anathema at first, but it makes life so much easier and everybody is very helpful.

How to define remission? well when you get off the Pred and no symptoms return is the only 100% proof! Despite the fact that some doctors think it’s when your blood markers are in the normal range! Not so - some never have raised markers, and for those that do, if the Pred is doing it’s job they should be in the range anyway.

Personally I felt “different” ( not very scientific I’m afraid) when I was down to about 1mg or 1.5mg. I just woke one morning and felt as if a weight had been lifted off me, can’t explain it any better than that. I knew it had gone, but I didn’t really believe it after 5 and a half years, so I just continued reducing very slowly until I got to zero- just in case I was wrong.

When you got time, and need to get out of the sunshine, or just bored(!) have a read through some of my posts - if you tap on my name at start of this post it will take you to my profile, and then select “posts”. As I said I never took TZB, but you still see how life was with GCA.

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You have just made my day brighter with this last post. It gave me that bit of sunshine that I needed while being in the mist of so much negative at the beginning of all this. Thank you.

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Dropped to 3mg and suddenly didn't feel good at all. Waiting to see if it is the 'period of adjustment' or our extraordinarily warm summer. Damned hot in Auckland. And I read the south island is far worse. Thanks for your advice. I keep forgetting the need for 'rest periods'.

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The best thing to do is go back and wait a few weeks and then try again. Preferably with a 1/2mg drop if you had tried 1mg or spreading it over a few weeks if you didn't. This isn't a race - especially at this level.

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Thanks.

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Good advice from PMRpro - don’t need to add! Warm weather probably not helping either, going to be hotter mid week I believe! Still at least you have sea breeze in Auckland.

Take care.

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Must have been a bad day. Thanks PMRpro and you.

Other thing I realised is that I don't drink much water! Changed that. Now, each time I go into the kitchen (often), I have another glass of iced water. Think it made a difference.

Stunned by the temps you are having!! Who would have thought, eh.

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Gosh it is a struggle to get that balance isn't it? I am on 60mg at the moment about to go down to 40 next week so these small increments seem a long way off and I hope to get onto TZB to assist.

Damn hot here too, but I find the cold much harder to deal with. Not looking forward to my second winter with GCA but maybe I will be better by then!

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Gosh so much to learn. I am glad you have had some success after a long journey. So encouraging to me just starting.

Yes I agree that travel will be possible but different. I have told my husband that while things are very intense now with lots of appointments, blood tests etc I am convinced that things will get better.

Go well!

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Yes they will, once you’ve got your head around things (and your husband has as well), so long as you are on the correct dose of drugs (for you) live can return to almost normal, albeit in the slow lane for a while.

You just have to think about things a little more, and learn not to commit yourself to too many things.

My “advice for newcomers” post might help your husband and daughter appreciate what you have, I know it’s not always easy to explain to loved ones what a strange illness it is, and that’s because you don’t look any different to normal!

Good luck.

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You're still here DorsetLady! The heat is terrible. It's gonna be a hot week. I can't cope with it. How are you coping?

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Hi,

Okay thanks, but I’m not doing too much! Think by mid week it’s going to be a scorcher! I usually go to Spain for a couple of weeks in the summer with my son & family, so it’s on a par to that! Unfortunately no swimming pool here in Canterbury!

Plus I’m not on Pred anymore and that makes a difference for most.

Take care!

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You'd think that bilateral lack of pulses might ring a few alarm bells wouldn't you! Keyes is always talking about it - she's mainly over on the Vasculitis forum but drops in here too.

All the best.

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Thank you for your good wishes and yes you would have thought so! I will look out for Keyes.

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Hi Di, lovely photo. What’s the name of the book? I’m on Actemra and it was s lifesaver getting me down off 60 mgs prednisone from May. Now at 5 mgs prednisone.

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Hi Leeleep, the book is called Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition. It is written by Kate Gilbert from the PMRGCAuk site and I got it on my Kindle through Amazon. A real direction changer for me. Very empowering too. I hope you enjoy it.

You are the only person I am aware of so far who has used Actemra so I am very interested in anything you can tell me about this experience. It will be another 2 months before I know if I will qualify and start.

Thanks for your reply.

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I probably should have it. Please feel free to call me if it would help. I can get my no out on the private page. Are you saying you’ve going to pay $20,000 for Actemra!!!

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No, only if I wanted to fast track the process and pay for it myself. As it is if I take the prednisone and cyclophosomide for 3 months with no improvement it will be free.

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Actemra was a lifesaver because I could not lower my prednisone dose without it. I wish I had been on it from day 1. However, I have had thrush for months and it’s driving me crazy . I’m trying to get off of prednisone ASAP and then if I still can’t get rid of thrush I will probably have to stop Actemra. My GCA appears to be ok and my labs are good. I deal with a lot of PMR pain. This is a slippery slope and the docs are not clear on how to handle the problem. I just picked up a herbal mixture and will see if it will balance me out. Also doing diet but I will admit I cheat a bit.

Good luck with your treatment. Actemra is really effective.

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Hello dirussell

Nice to see a new member on this forum from 'sunny' nelson. My Mum grew up in Onekaka and went to the still standing one -roomed primary school there in the 1930's-40s. I visited from OZ a few years ago and spent time in the lovely Golden Bay area staying in Riwaka - visitng Takaka where I saw the old movie theatre once owned by my grandpa and now a cafe (with delicious 'oaty' ginger crunch I adore). I took more than a few trips up and down that 'awesome' Takaka Hill trying to imagine my grandparents negotiating it in their car when trying to visit Nelson!! Anyway what a glorious area which brings alive many family memories for me. My Mum really loved her years at NGC where she got an excellent education at the time. It is however sad that she later developed GCA - lost eyesight and they had NO IDEA at the time what was wrong with her (1970's).

I also have PMR and GCA - the first diagnosed a year ago and the latter a few weeks later. Currently tapered to 15mg which seems the lowest level of Pred I can currently take without some return of symptoms. Anyway I hope your journey isn't too difficult and you enjoy your connections with the interesting crowd on this forum.

Best wishes

Rimmy

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Thank you Rimmy and what an interesting story and history you have in this area. We were in Takaka just last weekend in our campervan and stayed at Pohara and Pakawau. My Mum also had PMR but not GCA. Interesting and thank goodness so much more is known now.

Yes I am already finding this forum great and am sure it will help in the future.

Go well

Di

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Lovely places to visit and interesting both our Mums also had PMR ... !

Best wishes

Rmmy

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Welcome to the PMR/GCA site dirussell. I'm in the King Country/ Waikato region of the North Island. This is a wonderful, supportive, informative site. All the best for your PMR/GCA journey.

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I had a fall going to the bathroom early hours I have a step I have to go up and at present my right side is really bad groin as usual shoulders arm can't raise that! Wondered if I can get steroid injections for that, but the fall was that I battle to lift my right foot drags abit, I have to most times use a stick, I had that that two weeks ago it bruised both sides of my body right shoulder soon healed but my left elbow I think! I've either chipped a bone or it's bruised deep inside, I'm tapering down at present from 40 to 20mg I know the rheumy wanted me to go down further before I go back to him this Monday but because I'm feeling so unwell and in pain I haven't so might have to take his wrath!! I'm just so ignorant with these illnesses I ask advice from yourselves I have GCA/polym also autoimmune hepatitis being treated by a different specialist who cannot give me new medication as my inflammation has not gone down, but all my symptoms are def what has been diagnosed by both doctors who have discussed by phone about what's going on I'll get that info on Monday, so any help before I see him??? Please

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Hello jamie345

if you had posted this request for advice/support on a new thread/subject it would perhaps be seen more quickly by more people - but without having any real medical expertise I still feel safe saying any tapering down in your present condition seems a little crazy. Neither should you have to put up with anybody's 'wrath' when you clearly have so much going on in addition to PMR/GCA. I am sure some of our resident experts will come on board but in the meantime i wish you well - you must be feeling fairly miserable at present so hopefully you get some really 'good' medical support really soon !

Best wishes

Rimmy

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Thank you for replying I'm not up to date as yet how to use the site, I am going to get some help from my granddaughter as I've made mistakes a few times now.

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Not really mistakes Jamie - just a practicality! People who didn't "follow" this thread won't have seen your post so can't/won't comment.

As Rimmy says - if you have pain and injuries from anything it isn't a good idea to try to reduce your dose. I'm not quite clear when it happend - but if you haven't had the injuries assessed I think you should. Dragging one side doesn't sound like PMR!

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Hi Di - welcome to the club!! And hi from JAFA land! Love sunny Nelson, always said when we visited that it was the perfect place to retire to. Now that's gone off bucket list. With two kids and six grandchildren within 10 minutes from me in West Auckland, can't bear to leave them.

No PMR (fingers crossed), GCA diagnosed in Dec 2016. Tapering off prednisone, currently down to 3mg. Rheumatologist (and GP) told me GCA has gone, forget it, kaput. Just getting off the steroids left to do. Of course, it is in remission though I am hoping I am one of the lucky ones who never get it again! Who knows. Time will tell. And I get excellent advice in the forums that has helped hugely!

Lovely little grand-daughter. My youngest (grandson) is 9. Get clucky but, with three each, parents are not inclined to make grandma happier!!

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Wow sondya what a good story for me to read. I too have heard that it can burn itself out and not return. I do hope this is it for you!

Yes we love Nelson, came from Dunedin 10 years ago and it is home now. Both semi retired and husband into mountain biking.

I fully understand desire to be with grandchildren. I call Imogen my every day miracle!

Good luck with your continued tapering!

Best wishes Di

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Ha! My intro to NZ (from Sri Lanka via Oz) was Dunedin as well. Lived in North East Valley. Loved it there, gave hubby and I (and pup tent) a great base to explore the island. Every weekend we'd race off somewhere. Magnificent.

Back to Disease Talk!! One of the things that really helped me was I asked the (North Shore) rheumatologist and my GP (Massey) to explain everything to me, to keep me in the loop. I needed to know what was happening, what was the disease v what were the drug side-effects. Once the temporal inflammation went down, it was the drug/s and chaos they created that had to be managed. My mantra to explain the angst became 'blame it on Prednisone'. The docs were most obliging and kept me supplied with every case note that passed between them. They were thrilled I responded so well. Attitude helps, they said.

They thought it was great that I joined a forum as well.

Google GCA NZ. There's a good overview from NZ Health Navigator. Also, a good summary from bpac better medicine nz (Giant Cell Arteritis: Always Keep It In Your Head) have a look at NZ Vasculitis Society. GCA is not common here so to get health carers who actually know about it is very fortunate! And treatment and advice pertinent to NZ. The good news - as they say - is GCA is manageable and treatable.

With you all the way, Di.

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GCA isn't common ANYWHERE - but I'd have thought it wasn't unknown given the heritage of your population! All those Scottish sheepfarmers who fled the clearances...

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Great reply tks! Yes Dunedin always has a special place in my heart too. Will follow up on your suggestions too. My docs good with info too and I make sure I keep track of everything too. Good to hear of your experience and progress. Thanks.

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Hi, is this coming through in the private message page?

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No - on the forum.

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