Sorry this is a bit rambling, but the punch-line is at the end! I have been tapering successfully using dead slow method. Started going from 2 to 1 1/2 in December then from 1 1/2 to 1 from beginning of March. After 7 days I started Covid, just “bad cold” symptoms and I felt ok so I continued tapering for 6 weeks. This included the Easter weekend and I felt so good that I spent the four days either light gardening, playing pétanque or walking (4 miles for the first time in two years). By this time I was almost down to 1mg. One week later I started a “muzzy head”, a stiff feeling at back of neck going up into my head so I took 1 1/2 every day till now (11 days so far). The strange thing is….these feelings get better by mid-afternoon and don’t come back until the next morning! If I’ve gone too low why does it improve in the evenings?? I’m going to USA for granddaughter’s wedding in two weeks so really need to sort this out!
After 2yrs,2months I have a new experience! - PMRGCAuk
After 2yrs,2months I have a new experience!
I think you may well be simply reducing too fast - at these latter stages towards zero you should be going slower, not faster, because you are needing adrenal function to return and that really does take time, and often longer the older you are. It sounds a bit as if your adrenal function IS getting there but isn't perfect - it can take a year after getting off pred altogether for that anyway. Normal cortisol production follows what is called a circadian rhythm and the bulk is produced in the early morning to get you going for the day. If there isn't enough available you may well notice it - but you catch up later in the day as the afternoon bit arrives.
Thanks PMRPro. I will go back to 2mg and stay there indefinitely as long as that works for me. I am so grateful for the advice on here…I read it every day and I know I’m lucky to have got this far.
Dont let the low numbers fool you into thinking its always a short hop to zero as its sooo close. I was taking up to 14 weeks on the last 0.5mg drops and a year to by from 1mg to zero. My symptoms of poor adrenal function were not the same all day long and certainly reflected what I was doing activity wise, even though my adrenal function tests were good. Poor adrenal function can pop up out of the blue. However, I do have a bit of a worry about the neck symptoms. My GCA symptoms in the early months were vague neck issues upon waking that got better by the time I got to work. Gradually it felt like a permanent but faint niggly neck muscle all the time. In the end I was woken at night. If it were me, I’d stop reducing now and even go up a bit to get through this stress challenge albeit a happy one. Better still talk it over with your doctor. Have you got your GCA on your travel insurance?
Thanks SnazzyD. I have just taken an extra half mg. this evening and will take 2mg. from tomorrow morning. I took my last 2mg two months ago and was feeling great until I overdid things at Easter. I will stay on 2mg now.Thanks so much for your help.
Prof Dasupta, the UK GCA guru, told us a couple of years ago that he often keeps people at 2-3mg long term as it reduces the risk of relapses If it is good enough for him ...
Hi Snazzy reading this post has highlighted the neck symptoms that I have had for a while. Just at the back of my neck very uncomfortable in evenings but ok once I’m up and going. I had blood test recently and my markers were slightly raised. So they are now doing a second lot of blood test to rule out a viral infection and see if PMR is the cause. I am 6 years in and on 1 mg . So been taking it slow. I have no other symptoms apart from nighttime sweats which seem to be abating. Today I have decided to take 5mg for a couple of days to see if it improves. I’ll get my 2nd blood results on Friday.Thank you so much for all the expert advice.
I check in most days. It’s invaluable xx
Carole
As others have said getting as low as you have in only just over 2 years is quick, particularly as you’ve already had a blip in your tapering regime. You may think it’s slow, but for most people on here it’s not.
And to be honest not sure you are going to “sort it out” in 2 weeks.
My suggestion would be to discuss with your doctor who will probably suggest an increase again - and then start reducing after you get back from USA.
Thanks DorsetLady. I’ve gone up to 2mg. After my last flare, in January last year, I went up to 5mg and have slowly reduced over 15 months so I think 2mg should be enough. I’ll contact the doctor next week if this doesn’t help. Thanks again.
I’m 5 years in doing the DSNS method too and just cannot get under 4mg - the minute I go down to 3.5mgs the pains start to come back! So pleased for you that you’ve got down so far! Have a great holiday!
Thanks LindaB I’ve decided now to go to 3mg as I must be stable by the time we travel. The last time I was on 3mg was in June last year so that should be ok!
Totally agree with everything said, but just a thought, which I'm sure you have well in hand, to make sure you have all the requirements for your medication in order for your trip and as Snazzy says everything on your medical insurance, just in case you need it.
I am feeling the same. I am at 2 mg but 1.5 is no good. So staying at 2 for a while. 😊
Enjoy the trip and have a fantastic time feeling well at the wedding.
I’m also in the same boat. I’m pretty good on 1.5mg, but when I try to decrease to 1mg, I flare. So I’m content to stay at 1.5 for as long as necessary….too bad the Dr is not.
Zareda, our journeys sound similar. I was diagnosed at age 65 and started on 20 mg. I am currently switching between 2 mg and 2.5 mg daily trying to get to 2 mg by June. My hip hurts from time to time but rest and ice helps that. I have also found that I have little energy in the morning but can work through that. I'm also in the US and my rheumatologist wants me off pred too. I'm hopeful!
We sound very similar! I feel like I can eventually get there if he would stop rushing me and stop trying to add other meds to get me off prednisone. I don’t see the purpose in adding one med to get me off another….esp when I’m only on 1.5mg with little to no side effects.
Absolutely bonkers to be thinking of adding in another drug when you are on such a low dose!
Thank you! It’s nice to hear that someone sees it as I do. He makes me feel so inferior like nothing I say makes any sense,
Crackers - it won't necessarily do it and exposes you to the potential adverse effects of the other drug.
Prof Dasgupta, UK GCA guru, told us a couple of years ago that he often keeps patients at 2-3mg longterm to reduce the risk of relapse. It doesn't take long to lose all the perceived benefits of that reduction when you relapse and have to start back at a higher dose. And by 2-3mg you are at a dose that has so few adverse effects it isn't worth worrying about.
I agree with you 100%. I’m super sensitive to most medications so I know adding something else will just create more problems. At 1.5mg, my dexa scan is fine, my adrenals are functioning properly and any pain that I have is tolerable. I don’t expect to be 100% pain free at 64 with autoimmune issues, but I do not understand why he wants to risk creating more issues. I’m not looking forward to my next visit. It makes me so tense because I know a berating is coming since I haven’t decreased in 3 months. I’m sure he will have some lovely words of wisdom for me 😂
Like you, my journey has been 2 years now. I am down to 3mg per day and have tried to drop to 2.5 but the niggles returned so, for the time being, I am staying at 3mg. Also, like you, I’m keen to keep dropping until I’ve stopped but we do have to listen to our bodies.
You have gotten the best of advice and suggestions....I hopping on to wish you well. I'm still at 9mg....I'd probably just pop right up to 3mg....I wouldn't want to dampen that wedding! The change in time zones would be enough to exhaust me...take the best care💕
Thank you so much for all your replies. I know how lucky I am to have your help.
Yes, KerryIreland this is a wonderful site with so many helpful people! Mine is a 2 1/2 year journey and I'm down to 2.5 mg. I had Covid in December/January so didn't decrease during that time. I've noticed some symptoms (hip issues) but always hard to determine what is PMR and what is age. Slow and steady.... Have a wonderful time at your granddaughter's wedding and bring your meds with you!
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