GCA - Year 3 - Prednisone taper halted at 6.5 mg. I've been off the forum for awhile and feel the need to reconnect for valuable input. I was diagnosed Jan.2018 and am now tapered down to 6.5 (10 days ago ) ..... honestly felt great at 7mg. but 6.5 is a bear. Fatigue, body stiffness and aches, and transient head stabs all the time. I would like to hear from some long-haulers and hear what your experience has been this far out from diagnosis.
I don't know whether to call the rheumy or hang in there longer.
Thank you a head of time for sharing.
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Blurry62
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My Pred sojourn lasted about 4 & half years....but undiagnosed for 18 months previously...so nearer 6 years in total. So would say you’re not far off the mark....in the great scheme of things.
From personal experience would say the fatigue could be adrenals stuttering into life.....but the other symptoms more GCA like...even 1/2mg can make a big difference at such low levels.
If if were me, I’d be inclined to go back to 7mg pretty sharpish and hope things settle, but you may find it’s not enough, so you might need to do the flare recovery! But try 7mg initially.
As I’ve said a few times on here recently it took me almost as long to get from 10mg to zero, as it did from 80mg to 10mg.....tapering is a lot easier on higher dose for GCA patients...and it’s comes as a bit of a shock when the lower ones aren’t!
I went back to 7mg. After reading this today. My specialist relocated, and I have a new one to adjust to. I believe he will be supportive of this move. I will shoot him an email and let him know how I'm feeling in a few days. How quickly does one feel improvement when doses are increased?
Hi Blurry,Nice to see you back. I’m there with you. January 2021 was 5 years for me. I probably spent a year at 4 mg but suddenly I was able to get to 3.5/3. If I taper and have a flare that continues to worsen I have no problem doubling the pred for a few days and going back to the previous dose. I just don’t want to spend anymore time feeling crappy. The first 2-3 years were tough. That’s just me and I have a doctor who doesn’t seem to mind and has even mentioned very low doses for life. Tapering below 6mg is a real dance. fm
Sounds to be a bit of PMR poking its head above the parapet! Can't speak from personal experience but most people I know who had GCA were dealing with it for about 5 years - whatever doctors say!
It can - depending on how quickly you were put on pred for the GCA symptoms, the PMR-type effects may not have been apparent and GCA doses are always plenty to sort PMR effects. And either can develop much later in the course of the disease - and you notice if the dose of pred you are taking is too low to manage the symptoms.
Hi Jinasc! Glad you're still here. Remission for 5 years. Awesome. I was so hoping for remission. So does what I'm experiencing necessarily mean I am NOT in remission? I guess I reasoned that if the taper goes well then I am in remission. Thoughts?
Your down too low re-read Dorset Lady - me I would head back to 10mg and stay there for at least 1 or two weeks, then use the DSNS and take it slowly even 0.5mg and not one.
This is not a race, it comes when it wants and goes when it wants and your sight is important because once its gone its gone, so do not think you can hurry it into remission.
It took me three years to get to where you are now. Two flares caused be two fast reductions by medics, then we met Ragnar and PMRpro tweaked and DSNS came into being and so did TAH.
PMRpro's DSNS has been subjected to a small research project and the outcome was good.
When I started out there was not even a golden rule of no more than 10% at a time till you reach 10mg.
Tortoise won the Race. 🐰 I can only find a Rabbit 🤔 no Hare.
I've been reducing by .5 a month. Not fast at all. I have two rheumatologists and both agree that I need to gi back to the 7 mg. If that's where I'm comfortable.
If I dont have relief in a few days I cann increase more so. Hate to do that since I was doing so well on the 7!
Had an MRA to check aorta and carotids. Slight thingkening of left internal carotid. Cholesterol levels are perfect. Seeing cardiologist in a few weeks for evaluation of this new information. Official report said the thickened carotid was either cholesterol or GCA.
Are we having fun yet?
I'm so tired of staring at hospital ceilings. Test after test after test.
I was diagnosed in October 2018. Started at 60. July 2020 lost part of sight in right eye at 9. Back up to 50. Today at 14. Slowly reducing. Also take Actemra once a week since October 2020. It’s a long road. Fatigue is rampant. Ever onward.
Awweee hang in there x. My mum has GCA for past 5 years . She was on 60mg for nearly 2 years . Started to come down slowly and it took her18months to get to 15mg but she wasn’t in a good way on 15mg . Spent a year yo-young between 15-25mg . It was easier for her to reduce half mg at a time rather than whole mg ! 18months on and she’s down to 1mg 🙏🏼 She reduced by half mg every 6 weeks . Took her body a good 3 weeks to adjust :each time Her Professor has said finally it’s under control but unfortunately she also has Ankylosing Spondylitis/ osteoporosis & fibromyalgia.. so she constantly feels pain regardless ... but as for the GCA - it’s been a long struggle but thankfully under control and hopefully this time next month no more steroids . So have faith and patience... your day will come . Wish you well 💗
Hi Blurry62Well I’ve had GCA diagnosed since September 19 but I reckon I had it a good 3 years before getting really bad, I had headaches all the time plus scalp sensitivity, thought it was just me being me, I then had vision problems in one eye, but again didn’t do anything about it, also lost a lot of weight for no reason, then in the September became very ill and vision problems and was finally diagnosed with GCA . I’ve been on and off high dose pred ever since, was doing really well until I got to 5mg pred and then bang, I got PMR pain, back up to 15mg.
I hope you get better soon, it’s a real pain this illness. Please phone your rheumatologist.
GCA for nearly 5 years, now at 6.5mg having taken a year to come down from 7mg! I know I am struggling at 6.5, three times over the year I have tried 6 using the very slow method but ended up by scurrying back to 6.5 as felt so dreadful. My Rheumi just encourages me to try & reduce v v slowly but just not to if symptoms won’t let me. So frustrating = I think I felt the best at 7.0 - but even at that all the usual fatigue, aching, head pains If did a little too much. Once life begins vaguely to return to normal she is going to try again to see if I can be put onto Actemra ( 2 years ago when I was on 12 mg I was referred but the NHS Rheumi refused on the grounds that at 12 mg it was considered not necessary.)The adrenals or lack of definitely have a major input at this stage.
Hi Blurry62: I had/have PMR/GCA for 4 years. After 3 years had got down to 7mg pred but very difficult to get lower so I was put on weekly Tocilizumab and tapering went smoothly after that in year 4. So now I'm stopped with pred one month ago and taking Toxilizumab fortnightly. However it's early days! Reading the wise input on this forum, I know my journey is far from over. I'll continue keeping a health diary and following this forum- which has been an absolute mainstay throughout- for at least the next following year. For you, I'd say if you have recurring symptoms, get back to your rheumy RIGHT AWAY. There's too much at stake, especially with eyesight.
I was diagnosed with GCA in July 2017 and put on 80mg of prednisone and methotrexate. The methotrexate was swapped for lefludomide and then mycophenolate was added two months later because 40 mg and I flared again. With the combination of those three drugs I slowly, ever so slowly tapered and eventually in March 2020 exited the use of prednisone. After a couple of months I suddenly began to ache in muscles etc and when I saw my rheumatologist he scanned joints and said I had developed PMR so put me back on 20 mg prednisone and swapped me from mycophenolate back to methotrexate and the tapering began again but this time he gave me a more speedy taper and within two months at 10mg GCA flared. He said that it was his mistake and the taper was too fast and also the swap from mycophenolate had not been a good move so swapped that back. Since then GCA and PMR together have flared again, from a restart at 12mg where I had seemed all right. This time the flare has happened when I shifted from 8mg to 7. I am back at 20mg and now on a really slow taper and have been told to stop at 8mg which was the last okay level. He said that usually GCA stays around for at least 5 years and so expect another couple of years. He also said that some people just continue to have flares as an ongoing thing and that the trick is to find the lowest level of prednisone (preferably under 5) which will keep them safe. He is a really supportive doctor, really accessible even maintained face to face (or should I say mask to mask) appointments during two lockdowns last year (and in-between answers emails with my questions and rings when he sees changes in the CRPs), and is highly respected here in New Zealand (he is the lead clinician for rheumatology at our two big local hospitals) and so I am willing to trust his suggestions but have learnt so much from other people worldwide in this forum so thank you all.
“He said that usually GCA stays around for at least 5 years and so expect another couple of years. He also said that some people just continue to have flares as an ongoing thing and that the trick is to find the lowest level of prednisone (preferably under 5) which will keep them safe.”
Well he correct on the first point....
...but people don’t keep having flares if they reduce in a timely manner! As a well renowned UK Rheumy said recently in a webinar ‘the tapering in the guidelines look easy, but they aren’t for everyone!”
Plus he must have been reading this forum, either PMRpro or I must say on an almost daily basis ‘you are not reducing relentlessly to zero you are tapering to find the LOWEST dose that controls your symptoms...or in his words ‘to keep you safe’.
The problem is many doctors, including imminent ones, have an irrational fear of Pred - yes it does cause issue for some, but not as much as some medical people think!
On your tapering, I would say your early taper to 40mg was too quick. Yes you can taper more easily on high GCA doses, BUT only if the initial starting dose got the built-up fully controlled, and the following tapers were slow enough to control the resultant daily dump of inflammation. It took me 15 weeks to get from 80 to 40mg - virtually double yours.
The trouble is, even one flare (which is more likely in the first 6 months of GCA) seems to make an impact for the rest of your journey.
It’s unfortunate that PMR has appeared for you, and I wish you well.
For info (which you may or may not want to hear) - I reduced from 80mg to zero in just over 4 & half years - no flares, no added in steroid sparers. GCA only - in remission over 4 years. Had been undiagnosed for 18 months previously, which brought its own issues, but that’s another story...so about 6 years in total.
I was diagnosed in August 2013 with GCA and have been struggling to get below 7mg for at least the last 4 or 5 years - I have got to 6.5mg several times but always end up going back up to 7mg if I go below that. My specialist presses for me to get down to 5mg but I just can't seem to manage it. I don't want to go on steroid sparers (have not been offered Actemera) so am stuck where I am. Have to say on 7mg I feel well and can lead a relatively normal life.
Hi, I was diagnosed in May 2017. Put on 60mg then gradually tapered to 3mg currently. Tapered v v slowly from 10mg decreasing 0.5mg over twelve weeks at a time. At periods of high stress - sister dying, moving house - I took extra Preds for two or three days just in case. Come spring I’ll try for 2.5mgs but again, v v slowly. I haven’t met my new rheumy yet but might ask for a syncathen test in June when I see her.
20 years in between dealing with PMR and GCA. Formally diagnosed with GCA in 2017. On prednisone off and on for 10 years. Going this morning for first Actemra I.V. . Currently bouncing between 7 and 8 mg. Just can't seem to get below that. Also being tested for sleep apnea next week. I am not overweight. In my case it seems to be caused by reflux. I see stomach doctor next week. Have a Nissen surgery for reflux. It has stopped working. I suspect a hernia and bleeding stomach. Bleeding diagnosed in November. I have to get off prednisone. Hope Actemra works.
I’m on 7 And every time I try to go lower get sick. Endocrinologist said I needed that for my adrenals. It really doesn’t matter anymore it’s been so long. I think you should ask them about Actemra instead of it just being offered perhaps you can be a little aggressive.
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