Hi, I’m a new member here but been on my PMR & GCA journey since November 2018. Started on 60mg & am finally down to 3mg Prednisone. I was told to reduce by 1mg per month & am due to go to 2mg this week. Trouble is I still get the aches across my collar bone & upper arms to a certain degree. My hips also ache sometimes but I don’t know if that’s just age (I’m 70) & a touch of arthritis....hard to know! Plus I get quite tired the following day after strenuous exercise or even housework. What I’m wondering is if anyone has the experience of actually getting off the medication completely!! I hate the side effects that the steroids bring like bruising, thin skin, dreadful hair & weight loss not to mention the sweating head and would love to be free!! Thanks for listening!
New member introduction: Hi, I’m a new member here... - PMRGCAuk
New member introduction
Hi, and welcome
I had GCA only - and have been in remission, so no Pred for 3 & half years.
I would say that less than 2 years in, you have reduced very quickly to get to 3mg in that time.
Your aches and pains indicate that you may well have gone below the level of Pred that your illness actually needs at the moment, and the fatigue probably means that your adrenal glands are struggling.
They stop working at higher doses of Pred, and once you get to around 7mg, they need to start working again - and sometimes they can be very slow in getting back on track.
Aches could be arthritis as well, are they helped by ordinary painkillers or topical gels?
However I would be inclined to think it’s your PMR objecting to the low dose. May a few days at a higher dose might give you the answer - and we suggest that once below 5mg you taper at 0,5mg a time, not 1mg. It’s very easy at such low levels to shoot past the level you actually need.
5mg and below will give you very little in the side effects line, so don't be in such a rush.
Can you please put a bit more info on your profile - especially country - as you say Prednisone I guess you’re in States or Canada - methods and names of medication do vary - and it makes it easier to answer.
Thanks for this. I was told at the hospital that it could be 18 months to 2 years so that’s why I was expecting to be nearly off. (I’m in UK by the way) Cocodamol helps with pain relief on the odd days I need it. I’m supposed to reduce to 2 this week..... it was the hospital that said reduce by 1mg, but my last appointment was cancelled & I don’t go again till Sept....but think I’ll try just .5 & see how I go.
My last blood test was down to 8 which was great as I started at 96!!!
Oh dear, the good old “2 years” story - some very lucky folks manage that - but nearer 4 -5 yrs. my Ophthamologist on diagnosis told me - on steroids 2 years minimum, probably a lot longer, maybe for life! More realistic - actually 4&half on steroids, but undiagnosed for 18 months previously.
Bloods are good, but they only show inflammation is controlled, not that illnesses are gone! ...and they do have a tendency to lag behind symptoms.
Bit late - but have a read of this, might still be of some use - healthunlocked.com/pmrgcauk...
Thanks for your help!
Very helpful information can I ask you I’m on 20 mg prednisone gca/pmrI have come from 60 mg over the last yeAr I still have tenderness in scalp and a few lumps will these go away. Also I have read about gca and aneurysm s this has worried me sick and haven’t seen GPRD’s or been to hospital since Coronavirus so I’m very much in the dark about gca how it’s treated when will I know I’m getting better/worse my stamina is zero sleeping all 5he time. Also on folic acid and alendronic acid which is awful as I can’t swallow so well and have been taken off mtx as I did not tolerate it it very well and haven5 had a bone density scan. Need to understand my illness but just don’t get any answers. Thank you.
Is the scalp tenderness similar to what you had before diagnosis of GCA - and what exactly do you mean by lumps? Where?
If you find the AA too difficult to take- perhaps you should discuss with GP - can you get a phone consultancy or dose your surgery have a system called e-connect? That means you can ask a question, and dr will reply online - if you’re not sure have a look at the surgery webpage.
Lots of people don’t take AA - have you been prescribed a calcium and Vit D supplement? Sometimes that’s enough to protect your bones.
As for aneurysms - yes they are a possibility- but to be honest very rare - GCA more likely to affect head than torso.
Stamina can be affected by both the illness and the medication - so you really have to be strict about pacing yourself. If you look at the link i sent and have a good read of the “spoons” article hopefully it will help you realise it’s normal with an auto immune condition.
Can you explain what your tapering has been since you started - that might need to be looked at now you’re not on MTX.
Hi, we have a few that get off pred. A lot if members just drift off for various reasons. I think the ones I have seen being more effective listen to their body. If it starts glaring , jumping on it quickly. The lower the dose the smaller the reduction. These are the tapers we recommend.
healthunlocked.com/pmrgcauk...
Tried and test by patients and approved by some rheumys.
Thank you!
And this..
healthunlocked.com/pmrgcauk...
That’s great thanks, very helpful!
I wish there was an all clear test too Lyndaki!
It is still relatively early days for you, I guess. There is a period of rehab of about a year to get completely better, with lingering symptoms such as fatigue. This is even after getting to zero with steroid treatment. Use the time to get as fit as you can and please don’t ignore flare warnings. Nearly there!
Hello, I was 54 when I started with GCA three and a bit years ago. I started fit and active but the effect of reduced activity and muscle wasting from high doses of Pred have had a great effect on my muscles. I would get muscle pain with any exertion in my upper body, my legs were fine. When I got to low doses my body was quite achey until my adrenal glands started to work more reliably. My muscles are only just getting back on line and not being easily upset. I still couldn’t even consider the gym work I did back then, and have to be content with walking and gardening on the long road back up. So this is without having PMR. By the way, I could only reduce by 0.5mg every 10-14 weeks at your level as I was too tired and achey to do more.
Just as a comparison I was diagnosed in Oct 18 and my rheumy and gp were insistent on a very slow taper thankfully and I have only just gone down to 7.5mg. I havent had any real problems totally down to being able to taper at my speed. You may have yo take things slower to get lower without a flare. Good luck. YBB
What is your taper recommendation what does H how fast how soon thank you
I was advised to decrease from 15mg to 13mg then 12, 11 and 10 every 4 to 6 weeks but to stay longer if things didnt settle at each reduction. As my daughter was getting married last april I stayed on my dose then for 2 months. After I reached 10mg I have gone down by 0.5mg steps every 6 to 8 weeks. Other than a week I under dosed myself by accident I havent flared. I have also managed to work part time.
I have had to make adjustments like not doing too much or exercising and very little house work (shame) but have stil managed to enjoy lots of time with my grandson doing baking and crafts. It's just a matter of priorities. Mine were as simple as spending quality time with grandson and being able to work. YBB
Thank you. I’m beginning to realise that my consultant’s advice was somewhat optimistic!!! Once I got to 10mg I was told to reduce by 1mg a month & all was fine until I got to 3. I have had over a month on 3 with a return of mild symptoms so after a) speaking to my GP & b) seeing people’s experiences here, I took 4mg again yesterday as I was feeling particularly achey & tired. Back on 3 today & feeling much better so I’ve obviously got to slow my tapering. Next stop 2.5 once I feel “safe” on 3.
Like you, I have to intersperse activity with relaxation & im listening to my body!
It takes time to adjust to not doing what you used to do and some people never do! Those that dont adalt usually do flare.YBB
Thank you all for your responses. All very helpful as I’ve not had a lot of info from my consultant or doctor, but what you’ve all told me is very informative. I knew nothing about adrenal gland problems so am now better equipped to go forward. Much appreciated.
Lord - what hospital are you under? 18-24 months? We wish - only about 1 in 3 patients will fulful their concept!
Perhaps as well they haven't told you much else!
There are lots of people who get off - just not many are that fast. They tend not to be here though - they are off living life again.
I’m under Leicester Royal Infirmary. And as it appears from reading the posts here, I think 18-24 months is much too optimistic! By their calculations.....going by the timetable for reducing dose that they set....I should be off them completely now! But I know there’s no way I can do it too quickly. I take each day as it comes & do as much as I can according to how I feel....not going to let it stop me living, but I take into consideration what I’m living with & act accordingly!
That is the perfect way to approach any chronic illness. 👍🌻
I'm 76 and I'm 3 and a bit years into PMR/GCA and now down to 2.5 /2 mg prednisone but with the help of weekly tocilizumab (RoActemra) injections because at one point I was stuck at 7mg pred and couldn't get below that without stiffness and pain. And also, like many others I tried doing too much too soon. I'm not very patient! It was hard to accept that I needed a daily midday rest/siesta break. Nowadays, I have much less fatigue and the pain I have is arthritis ( only twinges) all quite manageable and rarely do I need a siesta these days. So far so good but am curious to know if I can actually get off meds completely in the future. I have learned from this forum not to rush anything though and to accept my circumstances. This, for me, is the hard part.
Again I would like to thank the fantastic people on this forum. Thank you all contributors and moderators who have posted and helped us every step of the way of a long journey.
I am 61 and was diagnosed with PMR in June 2018, I decided to get off pred due to side effects. I stopped taking them in December 2019. I have lived with the pain but have worked with a Naturopath to change diet and take supplements. I have Naproxen (NSAID) to take on occasion but do not rely on them.
I now seem to have much reduced pain. Due to the PMR strain on my joints I had a cortisone shot in each shoulder joint which helped redcue the pain in the joints.
It has take a lot of effort and big changes in diet to avoid inflammatory foods especially Gluten, Dairy and Sugar.
I believe there must be a reason for getting PMR and it is probably due to some lifestyle options. I have always been fit and carry no excess weight but still got it - was it my diet?
No one knows scientifically why we get PMR but maybe examine what you are doing and whether there are changes you can make that may help. If you not do it now, drink lots of water to keep the body flushed through and try to avoid caffeine.
Thanks , I changed to decaf coffee after diagnosis & eat lots of fruit & veg. Trying hard to drink more water! I hardly eat any bread or other common carbs like potatoes & pastry etc so managing to lose the weight I gained initially! Have always eaten a healthy diet & exercised so like you, no idea what bought it on!
Together with a lots of genetic and environmental issues your diet was probably a minor or some level of factor. We know that PMR takes many (individual) forms as it just describes a set of symptoms rather than an.illness itself. Thus your PMR might have arisen out of different genetic and environmental factors than others. I am really glad you are managing to get through yours effectively using your own strategies. 🌻
Thanks....it’s a learning curve for sure! 🙄
I am late as usual coming to this post and I assume you have both PMR and GCA.
I had GCA only and it took 5 years to go into remission...... now into 8th year.
Since 2007 when I was diagnosed,
I only know two people one had both, on only GCA both who went into remission after 3 years. Both were what I call early birds (40's and 50's) and had difficulty in getting an diagnosis because of age.
Take care, GCA needs watching extremely carefully.
I have been on prednisone after diagnosis for 19 months and am down to 3mg for last 2 months. Yesterday I started on 2.5 planning to vary it with 3mg for a few weeks. Amazingly, to-day I feel better than I have since the beginning. I know it may be just a quirk, but I am enjoying it. What I have done since I got over pneumonia in March is to continue to exercise, usually walking. The last few days I have managed over 6500 steps and hoping this helps me. Don't know if this is of any help to you, but thought I would "throw" it out there. Enjoy your day. 
Thank you! I should’ve been reducing .....According to my consultant!....but 1mg tomorrow but on reading yours & other messages, I’m going to try going from 3 to 2.5 first & see how I get on.
Like you, I walk as much as I can ...just been to our local country park!
Glad you are feeling so much better today...long may it last!
Forgot to say that I take prednisone by 7a.m. and am starting to take 1500mg. of Tylenol about noon, when I start going down, want to lie down and sleep. My back usually starts to ache which can be from the osteoporosis.
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