Hi. I was diagnosed with GCA in June 2015. There were no symptoms of PMR. I have been on a 2 year planned steroid reduction programme from 60 to current 6. Expected to feel better as I lost my steroid weight (plus a bit). However over the last month or so I feel really achy most places but particularly shoulders and hips. Find it hard to walk any distance even with a stick.
Does this sound like PMR and can you get it whilst on steroids?
My esr has gone from 26 up to 39.
The short answer, unfortunately, is yes. patient.info/health/giant-c...
I've read a number of people on these forums saying this has happened to them. Fortunately, if GCA is under control, the treatment for PMR requires a much lower dose of pred. I'm sorry you are feeling so bad. Get well soon!
Thanks. Useful article. I was hoping to get off all my meds after my 2 year stint.. seems that may be a tad ambitious.
Sadly it is. I was told in two years I would be cured by the Rheumatologist and I literally counted the days until at 1 year 11 months I had a flare. 2 and a half years on I am back to where I was 2 years ago and on 20 mgms having been on 3 mgms. It has been very depressing and I hate the side effects however I am basically very fit and can get on with my life so am just grateful particularly when I read about other friends in the Forum
Be gentle with yourself
I am pretty gentle with myself thanks and would recommend anyone with these conditions to do the same. I am very lucky that my husband is very thoughtful. My daughter is a gentle physiotherapist who has given me some simple exercises to help get some muscle strength and a stick to help walking. My GP is also a listener and my consultant has looked after me extremely well even seeing me twice in one week. He actually said that he was there for me anytime I was struggling.
If you have to have GCA may you be blessed with support like this. NHS by the way.
I am equally fortunate, GP husband who in fairness took a while to realise what was happening to me and it was missed by his partner. They just don't see enough of it in general practice but he is now very much on the ball diagnosing a patient last week.
I also have a superb Rheumatologist who I can text and email. I have told her about our forum, she said that most of her patients were elderly and didn't use the internet, I reminded her I was nearly 76 and we are not all computer illiterate. I am beginning to think everyone is learning about this disease, the body of knowledge is increasing so it will get better. We are lucky to have the support of one another.
Take care.
She underestimates us I think! The lady who got the NE charity up and running is now well up in her 70s, Three ladies on that forum are in their mid 80s and over 90 - sometimes they put me to shame with their computer skills! The Scottish website and charity, though no forum, have been around for well over 10 years now - and by definition, the movers and shakers are going to have been in their late 60s at least when they got going after developing GCA.
And yes - the word is spreading - thanks to those mature ladies who know how to switch on a computer 
I may be 65 and female but l have been in the computer business since 1968 when I did a computing science degree. Further underestimation when you are a retired grey haired old lady.
Enough to make me smile at the surprise.
It's very interesting, bright , intelligent women successfully juggling busy lives together the posts of how many of us are still doing some work. Maybe our bodies are telling us to take it a bit easier but there is nothing wrong with our minds. My Rheumatologist has been told the error of her ways and to direct patients to the Forum, she knows what she has to do!
As I have just told PMR pro, she has been told. Underestimating us a a grave mistake, we have the intelligence and the time to be partners in managing our care.
Funny isn't it - she is a woman in what has always been a male dominated field and MUST have seen the number of women there are who are at and beyond retirement age in medicine. And other sciences. Or technology. But she still classed "older ladies" as "non-computer literate"
I despair sometimes!
I particularly like your remark about being partners in managing our care.
That's a pretty common attitude towards older people. I was buying something at an electronics store one day and in discussing something with the sales clerk he asked me how I'd found out about whatever it was. I said, "the internet" and he said "good for you" and proceeded to tell me how his mother was learning how to use a computer. I didn't bother to tell him I'd spent the better part of twenty years using a computer, especially the internet, for my work.
A doctor (the one who did not diagnose my PMR) whom I had the misfortune to be assigned to after my gp retired was patronizing enough to tell me, when I asked for more details about tests and x-rays I'd undergone, that she thought I "wouldn't understand" them. Rolls eyes.
I think with us in particular, the more we know the more we are able to manage ourselves and not have to keep going back. Even with a GP husband I have had more help from the Forum with finding out whether symptoms were all part of the process than I could ever have from him because he doesn't know. He will consider the physiology.
As others have said it's a complex disease and we are all different but it's good to know we are not alone.
On another forum there is a PMR patient who had a totally useless rheumy (diagnosed PMR and gave her a week of 10mg followed by a week of 5mg). Her husband is also a doctor but he is terrified of pred - or should I say, was. I provided the reading list appropriate for a not-in-rheumatology doctor and now he is getting the message and understands you need enough and it isn't a short-haul process.
Onwards and upwards...
I could do with a copy when you have a minute.
I still recall my initial consultation with her when I was pretty ill and she said I would need to be on steroids for 2 years, my husband knows her well and they were talking gravely about " justifying the steroid load" it was obviously something that was of concern.
There was also celebration when I didn't get diabetes, wasn't anaemic and wasn't moon faced. What I have been is pretty well and enjoying myself and that's what matters. Seems to me it's all a bit of a gamble.
Follow this link:
patient.info/forums/discuss...
which is the resources post on another PMRGCA forum - the original really. This is where 5 ladies met and got together to get the English charities going. There was already a Scottish one - their link is there too and you will get more links to other publications on their website. The NE website is also greatly to be recommended.
I imagine you will also like this paper:
eprints.whiterose.ac.uk/852...
I couldn't agree more about the being pretty well and enjoying yourself - I have had PMR for 12 years. I lost most of my 50s to it as it was not recognised (I diagnosed myself in the end) and for the last 7+ years have had a pretty decent life on pred. I also have atrial fibrillation - almost certainly due to the autoimmune part of the PMR. I was Cushingoid, no longer having switched to a different form of pred and worked hard on weight loss. No diabetes, no osteoporosis last time we looked.
I think my steroid load is justified,
It is quite possible for people with GCA to then get PMR and vice versa. I think it is more likely for those who have GCA to get PMR than the other way round and of course it does not happen to everyone. Have you had your CRP checked as well as ESR? You obviously have increased inflammation for such a rise in ESR. What does your doctor say? Are they happy for you to try a higher dose of pred and see if that improves things?
Not had my CRP checked as my consultant only works with ESR. I saw him a lot over my first year with GCA and when he handed me back to the GP we came to an 'agreement' that he would be asked before any change to my steroid programme. My GP is concentrating on trying to get my blood pressure down.
I have a holiday coming up so will aim to see my GP when we get back. Meanwhile will take a few painkillers with all the other meds.
Thanks for your message
Hi,
Does sound like PMR but you also have to remember that having been on high doses of Pred virtually all pain, whatever the cause, is masked.
However, once you get to much lower doses, the aches and pains of other things surface (as I discovered with arthritis!). Plus, in anyone not on Pred those pain would have come on slowly, and maybe less noticeably.
You are also at the level where your adrenals need to start working again, and that's not always easy especially when you've been on high doses.
Having said all that, would think that probably you will have to increase Pred to ensure things don't get worse - sorry!
And, two years is a bit optimistic - took me four and half!
Thanks. That makes such a lot of sense. I didn't know anyone with GCA until I joined this forum so was in blissful ignorance that it wouldn't necessarily be all over in 2 years..!
I have made an appointment with my GP for after my holiday and see where we go from there. I am off to Dorset for a few days. Here's hoping I get through without any drama.
Hi again,
With regard to your adrenal glands, there's not a lot you can do to kick start them, apart from patience.
Some Rhuemys recommend patients stay at 10mg for a long time, in the hope that may help - not sure if it does.
Most people seem to think that a very slow reduction helps once you get to about 7mg which is when they should start working again.
I found once I got to 6mg the fatigue would hit me sometimes - and at odd times when I wasn't expecting it - not after physical exercise when you would expect it! Weird!
That lasted until I got down to 3mg - doing slow plan and only 0.5mg a time. Once I got to that level, things seemed a lot better, have been off Pred for 4 weeks now, but know that it's still going to take some time until my body begins to function as you would expect. Much more is affected by Pred than you realise - it's a very powerful drug - good and bad! No wonder doctors seem to have a love/hate relationship with it.
Enjoy Dorset when you come, weather looks fair for next week!
The 10mg holiday from reduction is more to deal with the PMR - the holiday to encourage the adrenals is at 5mg. One very good PMR/GCA rheumy of Celtic's and my acquaintance likes to keep patients at 5mg for several months - just low enough for the adrenals to need to do something but not so low as to leave the poor patient desperately tired.
Ok, thanks.
Really, the only thing to add to the other comments is to reinforce that the idea of 2 years is gloriously optimistic for the majority of people.
Whilst PMR can be a symptom of GCA there is also no reason why in the poorly-ness of GCA it may not have yet appeared/been noticed and the high doses would have dealt with it immediately, there is no reason why it wouldn't re-surface when you get to too low a dose, just as for any of us. The fact your ESR is rising is also an indication that there is returning inflammation - and that does require a bit more pred to deal with it. If it is dealt with quickly then it may not get to be a real flare.
However - it MIGHT also be you need to slow down the reduction because your adrenal glands are not joining in the game effectively yet.
Thanks. It sounds so obvious when you put it like that. Do we know anything that kick starts the adrenal glands into play?
Hi Granny b. So as you know your adrenals will have started producing cortisol again when you got to about 7 mg. A few of the other chemicals the adrenals produce are also somewhat affected, although not to the same extent, and I understand that the whole hormone balance of adrenals, thyroid and pituitary can take up to a year to get back in balance after pred is completely discontinued. I am sure PMRpro or one of the other experts can give you a better picture of that. The only thing I've heard of which may stimulate the adrenals is licorice *which is contraindicated* for people on pred, and also for people who may have some cardiovascular risk factors. So really, it's just time, patience, looking after our health generally, and hoping for the best. They can be very slow. I can feel myself gradually getting more energy, I'm at about 3 mg, but as I've been at this level all summer you can see it is a very slow process. Certainly the fatigue I've felt at this level is nothing like what I felt at 7 mg, but every step lower since then has brought its own new helping of tiredness. Nothing we can do except ride it out.
I spent 8 weeks on 7mg and 2 of 4 weeks on 6mg. Aches began about 8 weeks ago but have got much worse since. Maybe my own immune system is still snoozing.
I think some of the experts would suggest you need a slightly higher dose. Did you reduce all in one step, or did you taper down gradually by slowly adding more and more days taking lower dose until you were completely on the lower dose (that takes a month to six weeks to accomplish)?
Hi. My consultant gave me a programme of reduction which reduces every 4 weeks. 7mg was an exception where it was 2x4 weeks. I don't feel I can alter the dose without his say so. He is very accessible unless he is on holiday. He saw me twice in one week when I was struggling.
I need to see my GP to get the blood tests done and take it from there.
Print out a copy of the dead slow nearly stop plan, and show it to your consultant. It still gets you down by 1 mg per month.
healthunlocked.com/pmrgcauk...
Also one of the other people who post here may be able to give you the link to the other plans. I'm not sure how to find them. They all run on the same principle to minimize pred withdrawal and help you find your lowest possible dose. I showed this to my doctor and she was very happy to let me use it, and is thrilled (I mean that) with my getting to 3 - she had said she was happy with me at 4! Started at 15 in June, 2015).
Thanks HeronNS. I see it is a very gradual transition from 1 dose to the next. Looks useful to discuss with doctor.
Exactly. I've been able to use this method to get to what I think is going to be my lowest dose for a while. I would like to have carried on downwards but such is not to be, not yet anyway. As far as I can estimate I've had PMR for about two and a third years, so even with the textbook response to pred, even with careful diet and exercise and getting various other therapies to help with inflammation, even with starting the whole process in otherwise very good health, I didn't get through the journey in two years. But I wouldn't be where I am today without the support and advice of the wonderful people on this forum. ❤
No - much more likely that 8mg is the lowest dose that manages the symptoms that you are looking for. You can't reduce relentlessly to zero to a timetable - however much your doctor may want you to. As long as the underlying cause of the symptoms we call PMR is active you will need enough pred to cover it. The activity of the autoimmune disorder seems to vary over time and at a period of low activity you may get the dose lower - only for it to pick up activity again and cause increased symptoms. Or the activity may remain much the same and you reduce too far to cover it. Either way it will cause a flare - and the second is by far the more common situation.
Only about a quarter of patients manage to reduce to zero in 2 years - and are more likely to have a relapse at some later date. Half need up to 4 to 6 years. That tells you something about the idea of reducing to zero to a timetable over 2 years doesn't it?
It doesn't mean you WON'T get to a lower dose. Just not yet.
No, nothing that will "kick start" the adrenals - whatever you may read on the internet about such things - just gentle persuasion and, above all, patience if they are still capable of production. In a very few people they will not be able to take up the task again and replacement therapy will be called for - but it isn't JUST the adrenal glands themselves, it's all the switches and connections in what is called the HPA axis: the hypothalamus, pituitary and adrenals, some people include the thyroid as well. It's a complex task, not just a question of flipping one switch.
Thanks for all the contributions. I am quite overwhelmed by how kind people on this forum are. I am much more confident not being alone any more.
Hi all. Back from hols and had bloods and GP appointment. I was due to drop to 5 of Prednisolone but went up to 8. Can't say it has helped the aches. ESR was 39 from 28 last May when on 11. Fortunately I am not having GCA symptoms again. Thanks for all your responses to my original question.
Keep an eye on that ESR - even the 8mg may not be enough so make sure you know sooner rather than later when a flare has developed properly. And be warned - sometimes the ESR doesn't rise or doesn't rise as much if you are taking even some pred.
Hi PMRpro. Thanks.
I am having repeat bloods in 6 weeks. At the first hint I am having a GCA flare I will seek immediate help. PM R is a little more tricky as I haven't been diagnosed as having that except in my own mind..
Looking forward to my first meeting at local informal group. There will be cake involved at least. 😊.
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