I haven't posted for a long time. I was diagnosed with GCA in May 2014 with very high levels of CRP, ESR and a positive temporal artery biopsy. I was put on 4Omgs of Prednisone and responded miraculously within hours. I found our wonderful web site, read everything including the book, changed my lifestyle and ate only healthy low carbohydrate food. I also had daily Manuka Honey. Other than a few minor hiccups when I came straight to the web site to find the answers I got on with my life, went to Australia and had other wonderful holidays. I was down to 3 mgms in March of this year when I had a flare. It came quite out of the blue and I didn't recognise it at first put in down to travelling to the Maldives and spending time snorkelling but the headaches got worse so when I got home I saw the Rheumatologist and had to go back up to 20 mgms. It was such a shock as I thought that I had smugly beaten it but I have to admit I had slid back to my bad old ways, not looking after myself, not having enough rest, not eating healthy food and not treating alcohol with respect.
I am now down to 10mgms but my CRP is still high so I have to stay on it for a further 6 months before trying to reduce again. It's hugely frustrating and I still have the tension in my head, which others have described as a steel band but I am not too bad and compared to others I am incredibly lucky. It's supposed to burn itself out in two years but mine is obviously going to take longer. What I have learned is how important it is to take care of myself and listen to my body.
So all of you out their look after yourselves as well
Written by
EdithWales
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Thanks for the post. Was diagnosed with PMR 10 days ago. My CRP was at 91. Was on 50mg for 7 days, now on 20 for my third day. What does your headaches feel like? Are they like a migraine or just barely there all the time. Hope you recover soon.
PS You mentioned treating alcohol with respect. Does that mean to completely stay away from it?
My CRP was 189 which is dangerously high and I had full blown Temporal Arteritis. The headaches at that stage were like the worst ever migraine and included my neck. I was treated by a physio for my neck which just made it worse. Nothing helped and I was sleeping with ice packs and having to replace them as then got hot. What I have now is nothing compared to that, more like tension at the side of my head which can be caused by the steroids mimicking the disease.
I was being coy about the alcohol, a glass or even two of wine is fine but downing the Happy Hour Mojitos every night in gay abandon isn't.
My husband is a GP but the Forum collectively know more than most doctors.
The literature may say that - in 7 years on 3 different forums I have only "met" one person with PMR who was successfully off pred in 2 years and only one with GCA - and although she was off pred in 2 years for GCA she now has developed PMR a few years on and is back on pred. I think 5 years plus or minus a bit is more likely for the majority - and that is assuming that there isn't an attempt to reduce far too fast that induces a flare. Non-English medical literature and textbooks do seem to be far more realistic.
PS - is your husband still in practice? I bet any of his patients arriving with symptoms that could be GCA get right royal and very knowledgeable treatment!
That was what I was told by the Rheumatolgist who has been magnificent although she said last week it can take longer. I think the Mayo Clinic says about two years as well. I suppose it was just so frustrating having done well getting slowly down to 3 mgms but so be it. The most important thing is quality of life and I do my best to minimise the side effects.
That's what I mean - the Mayo is also English-speaking. I read a lot of German stuff too. My own doctors are in Italy - another big GCA/PMR group is somewhat further south than us.
Did you see my edit to the first post about your husband?
Burnt out in two years! I wish, and so do many others. Think mine may have now (getting on for 6 years pre and post diagnosis) but still reducing carefully, as one is always a bit cautious about saying too much too soon.
I didn't flare, but did find it very difficult between 6mg and 3mg - lazy adrenals I think, and now (hopefully) on the slow journey to zero some days find I slip off into an afternoon's catnap for no apparent reason. Although a meal at lunchtime is usually a killer!
Yes you do still have to listen to your body, even once down to zero some say it takes about a year for your body to get back to normal - whatever that is!
I don't drink regularly, but have to admit when I do on high days and holidays it doesn't seem to affect me. Although I did give it up completely when on v.h. doses. All things in moderation I suppose - boring I know!
Yes it is very frustrating, but no point in taking any risks. You will get there one day, but maybe not as soon as you'd like.
Thank you. I agree about the drink, as long as it is sensible, if not its my own fault. I am just grateful it could all be so much worse and you are right it's not worth taking risks.
Well two years down the line and only one flare - not so bad. Two years into my journey had two flares within that timespan.
5 years down the line remission and into 7th year.
Yes like PMRpror I only know 1 person within the two year span and then PMR - it is the same person.
I do know people within my time span of 5 years and some for much longer.
I am surpised the Mayo says 2 years as they are participating in the drafting of new guidelines for Diagnosis and Treatment of GCA via EULAR and ARC. Those guidelines will be out later this year or earlier next year.
In fairness that is what I was told over two years ago and as I had so few problems I had no reason to doubt it. I suppose the body of knowledge grows daily and experience of patients has to be recognised.
I know I am incredibly lucky compared to so many others and am now philosophical about how long I have to take the steroids.
Thank you for the website and I will keep an eye out for the new guidelines.
CRP has gone went up to 39 although I am fine but I have been put back up to 20 mgms of Prednisone which is where I was 2 years ago. The Rheumatologist has suggested I try Leflunomide which she did a few months ago and I refused as it means more blood tests and increases blood pressure which I have anyway. The side effects such as nausea, vomiting and diarrhoea sound like fun. Does anyone have any experience of it please?
I know one gentleman who was put on leflunomide because of severe problems with pred - initially it worked but then caused far nastier side effects than even pred had managed, potentially life-threatening.
There is no real proof in trials that it works and I think it is like all of the so-called steroid sparers - if it works for you and doesn't make you ill, fair enough. Which of course you can only find out by trying. But if it were me, being on 10mg after barely two and half years I'd take that and keep going without adding in another confounder. If leflunomide was so good they'd be using it far more - and doing publications. They aren't.
My initial reaction was not to mess with my drugs by adding another. I was a model patient for two years looking after myself and doing everything right then didn't keep it up and I am sure that life style makes a huge difference. My daughter said I was worse than Ozzie Osborne but I pointed out I didn't do hard drugs.
I am going to India in two weeks so would not countenance changing before and I will really need convincing. As you rightly say, if it was that good we would all be on it.
Ooooh - can I carry your bags? I would love to go to India - but it's one of the places of OH's non-bucket list. He's a bit autistic spectrum - think he thinks it will be all chaotic which he doesn't do well...
Of course you can. I went when I was 58 as part of self actualisating with a group going to Ladakh and it was a disaster so I pulled the plug on it but did do Delhi and the Golden Triangle. My husband has never been and he wants to go on the Tiger Safaris which we have booked so will be good.
Having GCA has made me even more determined to enjoy life as much as I can, I suspect that the steroids have made me more reckless or maybe that's just an excuse!
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