I would really love some feedback on this. I’m GCA only since March 2017. One flare in October 2017 but since then a gradual reduction of Pred to current dose of 5mg. I’ve just seen my rheumie who is very pleased with my bloods and progress but he now wants me to stop any further tapering until October. He firmly believes GCA to be a two year plus disease and to carry on tapering at my current rate ( I’m already using Dorset Lady’s taper method, so pretty slow) could result in another flare because we are still 9 months from the time I was diagnosed. I feel very well ( touching wood!!!) and I’m tempted to ignore him and carry on the taper but on the other hand I can see his logic and maybe he’s right? I wonder, has anyone else been told to stick at a dose for the same reason?
Reduce of not?: I would really love some feedback... - PMRGCAuk
Reduce of not?
Hello, I too am a March 2017 GCA person. Also on 5mg now dipping down to 4.5mg on odd days. That 4.5mg I really feel it in terms of general physical functioning. At these practically physiological doses I’m not going to relentlessly taper, even if my Synacthen test comes back ok. If the test is ok, it’ll just tell me that my adrenals can be jump started but it doesn’t tell me if they will be on duty at all times consistently. I too feel ok GCA wise but I just get the feeling I’m not out of the woods and stress on the body due to adrenal sluggishness might cause a flare, I don’t know. I don’t know why I feel that, I just do, but that’s me not you. Why the relentless taper? Is it to feel relief about being at zero and therefore it has gone. When I first started out zero was my goal, the golden chalice, but now I know there’s too much at stake. I know I’ve already bucked the trend compared to most but all the research suggests the 2 year plus duration and there was a piece on this forum about serious complications such as aneurysms occurring in those in symptom free remission. Funnily, I suspect there are many here who read your post and would give anything to have a Rheumy who knows where the brakes are instead of insisting on a white knuckle ride to zero. Anyway, as always, you know your body not me. Good luck!
Hi Snazzy. We seem to be travelling similar roads. At these lower doses, I guess it won’t make too much difference cumulatively if I hang at 5mg for a while. I think my rheumy also feels remaining at this dose might prevent PMR from brewing. I’m in the middle of renovating a house, quite a project, so maybe I shouldn’t push my luck and just be thankful I feel ok and things seem to be headed in the right direction. I’ll be interested to hear how you get on. Good luck too!
Good luck with that! We are going through final drawings stage for an extension. There’s another bit of research that is bandied about that says really 5mg and below have no more incidence of complications than the general population other than cataracts and they are fixable. Some people with PMR are held on 10mg for a year I believe. Also, correct me somebody if I’m wrong, that Prof Dusgupta said that worry about cumulative dose and the need for steroid sparing drugs doesn’t kick in until about 10g of total Pred.
Gosh that’s a new dilemma but one that shows your doctor’s deeper knowledge. It is probable that a creep back of symptoms would occur, leaving you in a worse state than now. I would do as I am told. 5 mgs is a relatively harmless dose as far as side effects go. If your diagnosis is correct it is unlikely that the dragon is anything other than sleeping. You are a lucky lady in an enviable position, don’t queer it.
Thank you Jane! I think you are right and I’ll just stick with it until the Autumn. On the other hand, just been diagnosed with Afib...typical!!!
PMRPro is good on that topic. Do a search.
I have recently learned that pred can affect the balance of electrolytes in our bodies. I think this is what minerals like sodium, potassium, magnesium are all about. Just a beginner in this, but I bet all we on pred should be getting advice on how to maintain healthy electrolyte balance. About six weeks ago when on holiday I had a serendipitous conversation with a fellow traveller who, upon hearing about my increasingly regular and severe morning headaches suggested I was sodium deficient and should consume some salt. Eventually I did this and I have not had a single morning headache since then, and only a couple of other headaches attributable to weather and air pressure. Earlier in pred journey I'd had what felt like a fluttery irregular heartbeat, which my doctor thought of no importance so it was not investigated or treated. Instinctively I decided to eat a bit more salt and that seemed to help, but apparently it wasn't enough to prevent the new symptom of headache. Another symptom which had worried me for some time, aching legs when at rest, so severe it would sometimes wake me up at night, has stopped. I can only assume it was a circulation problem which has been fixed by my additional salt. Because we eat very few packaged prepared foods and haven't had a salt shaker on the table for decades we eat a very low salt diet. Since increasing salt intake I've kept an eye on my blood pressure. This had always been low but in recent months had climbed and got really near the red part of the chart. Since adding salt to my diet it has gradually dropped back down to close to my old levels.
I would be very interested to learn if anyone else has encountered similar problems and what their solutions have been.
Hello Heron. That is really interesting. I too am very diet and also exercise conscious and I have kept an eye on my electrolyte balance since being on Pred....but rather ignored sodium. During this very hot weather we have been having in the UK, I’ve kept up my fast walking etc in the heat and only this last week thought to increase my salt intake. Maybe as a result, my Afib has not been so noticeable. I mentioned the whole sodium thing to my heart consultant ( jokingly suggested I eat more crisps... not amused!) but he discounted the theory out of hand. I know there are triggers that make Afib worse ( for me these include stress, alcohol and, interestingly, sugar)...sodium deficiency, I agree, must surely have an effect.
I had a slight arrhythmia before being diagnosed with GCA but nothing bothersome or worth treating. On the initial high doses of Pred, the arrhythmia either disappeared or I just didn’t notice it. As I have reduced the Pred, the bouts of Afib have become more regular...could be a connection or perhaps more likely just the Afib gradually getting worse. A new medical condition to learn about!!! But very interesting!
I had long ago noticed a feeling which I described to my doctor as like a bird fluttering in my chest. He sent me off for some sort of test which involved walking on a treadmill, so long ago I don't remember the details, but nothing untoward found. But for years I'd noticed, if I took my pulse as one does after exercise for example, every once in a while it would seem like I would lose a beat. This effect was definitely much worse after taking pred and so I mentioned it to my doctor, but she thought it unimportant.
After I got back from my holiday I had an amazing moment of synchronicity This has been very rare in my life, so I really pay attention when it happens. I must have heard a review of a book and placed a hold at the local library and this book, which I'd entirely forgotten about, was waiting for me. It was The Salt Fix (James DiNicolantonio) from which I learned that modern low salt diets often do us no good. I was very cautious about extra salt intake, because I'd been well and truly brainwashed by the common medical advice, but the evidence is there now to share with all - I am much better with more salt. Because our diet is by default still low salt I deliberately take a few grains now and then. If it tastes good, I have more, if I don't like the taste, I know I have plenty in my system. This technique, unfortunately, does not work with salty food, btw!
Thank you, Heron, I am definitely going to be more aware of sodium intake and see what difference it makes, and I will also do some further research on the subject. I’ve been put on anti coagulants...I hate taking any form of drug so if I can reduce my symptoms naturally and then take natural blood thinners such as curcumin etc that would be brilliant. I’ll see if I can find that book you mention too, sounds interesting.
As SJ says - I have afib. The cardiologist arrythmia expert is confident it is due to the autoimmune part of the PMR. And interestingly - it was well managed medically but when I got to 7mg pred it resurfaced despite the medication. At 8mg it was better (just short episodes) and at 9mg almost entirely gone.
And by the way - the need for reliable anticoagulation is real. It does reduce the risk of stroke/MI notably.
That’s interesting. My arrhythmia guy tells me there is no connection between my arrhythmia and GCA ( how does he really know?) and my Rheumy also thought it highly unlikely. I’m not so sure. Also interesting that your arrhythmia resurfaced at 7mg...mine has become markedly more noticeable since about 6mg. So...a connection with cortisol level in the body? Lower level could easily be affecting the heart along with everything else. I was diagnosed with mild arrhythmia a few months before GCA diagnosis...my bloods were a bit off too and I generally didn’t feel at my best. I had been going through one of those ridiculously stressful periods over several months...probably had low cortisol level as a result, arrhythmia popped up first followed by GCA. Anyway, who knows?! Fascinating stuff!
No - I think it is an increase in the inflammation level as the pred dose falls. Vasculitis can trigger a/f - I have found papers on that. I know 2 others with the same effect. a/f is also more common in other a/i disorders - RA for example.
How can they say there is no link? Autoimmune disease attacks various tissues in the body - so why not the electrical cells in the sinus node?
This article
msdmanuals.com/professional...
mentions inflammation as a cause.
I have also been on Pred since March 2017 and am nearly on 7.5mgs a day by very slow tapering and should be there in a few weeks if all goes well but have tried twice before and have had to increase dose. I imagined that I would continue tapering until very low. However my doctor said to stay there until next year! He said 7.5 is negligible or words to that effect and that it will burn itself out. He has also said that it usually takes two years. I don't know whether to follow his advice or try to continue tapering. In any event I will wait until I am confident at 7.5mg and no aches. Interesting to hear these different opinions!
Exactly what my Rheumy said...give it a proper chance to burn itself out. Here’s hoping!!!
Would suggest you follow Rheumy’s advice - he’s probably thinking of your adrenal glands as much a flare. Plus you have reduced very quickly so far, so don’t push it!
Makes a nice change to hear his thoughts rather than patients being hassled to reduce too quickly.
Thanks DL. I’m actually rather relieved to think I can just stop at 5mg for a while...takes the pressure off for a bit. Yes, I think I’ve been very lucky with my Rheumy...he’s been pretty good all along.
I’m PMR Dec 2016. At 5mg. My doctor is in no hurry to have me reduce at this point. She didn’t say not to reduce, but didn’t encourage it either.
It also helps your body catch up in terms of adrenal function. You are already at well under the dose of pred equivalent to the daily required amount of corticosteroid so they are being prodded awake and topping up the 5mg. If I was at 5mg after such a short time I would definitely stick - it would be such a shame to spoil the ship for a ha'p'worth of pred...
He sounds good Judy. Stick with him!
Thanks Kate, I will!
Any experience of having GCA and Actemra (TCZ) being discontinued while still trying to taper steroids
Mastectomy tomorrow!
