I had a private face to face consultation with Rod Hughes yesterday as I’ve been struggling recently with my PMR. I said I would report back to the forum on my experience. Here goes:
- my appointment lasted 45 minutes. He made me feel at ease, listened to what I had to say then made recommendations.
- although I’ve had a number of flares he said I shouldn’t feel pressurized into reducing my Pred dose and staying on 10mg for a while wouldn’t be detrimental.
- I’m to change my monthly ESR/CRP blood tests to an annual test unless I experience a bad flare as he felt my monthly tests were a waste of time.
- we talked about DMARDS as I’m under pressure from my NHS Rheumy to take one. He didn’t recommend that I try one at this point because of possible side effects and that they only work for a very small number of people. His choice for me should I need one would be Leflunomide.
- he looked at my private DEXA scan results from March 24 and said they were average for a person my age and wouldn’t recommend that I take a Bisphosonate. Instead of my yearly scan he recommended that I have one every three years.
- we discussed other issues such as skin fragility and crazy hair.
All in all he was very positive and emphasized the need for me to try and stay positive too. He said unfortunately PMR has its own agenda and stressing about it doesn’t help. He said using Mindfulness Apps might help with my stress.
As with any doctor consultation I’ve since thought of a least 2 questions I should have asked him but I find that’s generally how it goes. All in all a positive experience. Tiggy 🌸
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I meant to ask him how to deal with a flare that doesn’t settle so I’m not yo-yoing up and down on pred doses. Would have been interesting to know what he would recommend. I talked about trying alternate day doses and DSNS methods when starting a reduction but he didn’t give a preference. Since seeing him yesterday morning I’ve had some PMR aching in my arms (I know sod’s law). I’ve been on 10mg for 10 days. I should have asked him what next if this flare persists. I could email him but I’ll see how things go over the next few days. I’ve had a stressful week which hasn’t helped.
Go back to the last dose - if that is enough, give it a month or so before trying a tiny and slow taper again. Eventually it will work. A flare is almost always because the new dose you have got to is very very slightly too low. And if you persist it won't settle. Step back, patience and trying again is always the best answer. If you have a stressful week, all the more reason to wait until that is past before tapering any further. Even if you are in the middle of a taper. press the pause button and wait it out.
I’m not sure what that last dose should be. I’ve got into a right pickle!
Basically I was ticking along nicely on 8.5 mg for over 3 months (mid March until 25 June ) when tried a 0.5 reduction using DSNS method. Three weeks in I started to flare and tried a quick Pred burst for 5 days of 13,12,11,10 and 10 as suggested by someone on the forum. It didn’t work so I did 13.5, 13.5, 13, 13, 13, 12.5 and 12 for 7 days. Felt ok so dropped back to 8.5 for 3 days but aching started again. I went back up to 10 for a week then dropped to 9 for 2 days. Aching back again so upped to 10 and have been on 10 for 10 days. Ok until yesterday evening and now aching again (not too bad but definitely there).
Have you also changed lifestyle factors? That can be crucial too.
I don't know who suggested the quick pred burst - neither DL nor I would usually say do it like that. You add 5mg to the dose where you flared, so 13mg, but for up to 2 WEEKS. Only once the symptoms have settled do you drop back to the dose above where you flared, 9mg in your case. You got into the yoyo pattern because things weren't cleared out in a calm way,
You don't only flare because of overshooting the dose - which is where you use the flare protocol. You can also flare because the underlying disease activity has ramped up and it is beginning to sound as if that what is happening to you.
No it wasn’t you or DL who suggested the Pred Burst. Someone on the forum said it worked well for them so I gave it a try. I haven’t really had any major lifestyle changes. This time of year is always more hectic, looking after boisterous grandkids etc and we’ve recently completed a bathroom refurbishment. I’ll give it a couple of days and if the aching doesn’t improve I’ll go back to 13 for up to two weeks. Today marks my 4 year anniversary with PMR. Not sure why but these anniversary days seem so poignant ☹️
Well all that is loads to trigger a flare and I doubt any of us would be surprised at the result! You have to rest and pace yourself and when life ramps up the demands - you have to be strong in setting boundaries or you might get away with raising the pred dose slightly. Although that isn't really advised - it can get you into bad habits.
Hello. Just wondering how much of a problem you have with fragile skin? I am so embarrassed by the amount of bruises and marks on my arms and legs and having a skin like paper. Yes also the crazy (frizzy) hair! Any advice welcome as I'm so nervous of knocking myself etc.
I suggest you post this as a new post - only a very few of us will see this here on a 6 month old thread.
I've just given myself a new bruise on my shin by catching it with my heel as I crossed my foot onto my knee to put my sock on!!! And have a few small ones on my left forearm - I think because I hung a shopping bag over it. I just ignore them now!
Keeping the skin well moisturised helps and a lot of people have used arnica cream to get the bruises to fade faster. Some use shin and arm protectors to try and reduce the bruising when gardening or doing other "risky" activities.
Unfortunately fragile skin is very common… many use an emollient to keep skin as supple as possible… plenty to choose from -but DoubleBase is popular- and some with accommodating GP get it prescribed. Always worth asking .
Plus make sure arms and legs are covered - easy enough in winter -and there are long sleeved gloves and leg protectors if working in garden.
If you raise a new post you’ll get related posts and plenty of suggestions. This post is 6 months old so not many will be following it.. probably only PMRpro, myself and author.
As for hair, it will improve, the Pred alters the texture unfortunately-but it does get better - maybe look for “taming” shampoos and/or more gentle ones, wash less frequently and allow to try naturally.
Thank you DL that's reassuring. I just feel so embarrassed at the amount of marks I have on arms and legs in particular, though in winter not obvious of course. Doesn't help I have lost a lot of weight and have very saggy body to go with! Not a great look. Oh well!!
Hello. Yes there are several of us suffering from this and unfortunately skin tears can take weeks to heal and leave marks for six months or more. I’m still under nurse treatment for a wound that occurred 6 weeks ago. If you scroll back you’ll see Country Kitchen started a post about2 weeks ago that received a lot of response and tips. Bridge31 suggested Limbkeepers which I had never heard of but have now purchased hoping they’ll give me future protection. Especially working in the garden. Good luck with keeping clear of injury
Do you know WHY you fall a lot? You should ask your GP to refer you to the local falls clinic - there may be an underlying problem that can be sorted out. Falls as you age are common, often unnecesssary and may lead to a broken hip which can be devastating to your way of life.
Yes good question! I was referred to falls clinic but they didn't seem concerned. Yes I do worry about broken hips etc but don't know that I can do other than go out in a Michelin man outfit. I've just started Pilates (very gentle small group) which I hope will strengthen my muscles. I am on a lot of meds for various issues (High BP, cholesterol, blood thinners etc etc and of course the steroids since 2022 - aside for when I came off them and relapsed within 4 months). Hey ho!!
Do you check your BP - are you on the right dose? Mind you - before I went on pred, PMR made me so clumsy I could trip over anything! And I get very stiff if I'm not on enough pred - so that is also something to consider.
Do you mean you fall in the garden, or just generally? And is is because legs are weak or a balance issue. If it’s balance, then this is just one set of exercises - plenty more online covering both issues. And Pilates will help… I’ve been going for almost 10 years now - during and since GCA…
If you mean just out and about then use a walking stick - plenty of foldable, snazzy ones online. I used one a lot when my arthritic knee and hip were playing up…if you mean in garden then there are aids to help there as well..
yes sorry it was Country Kitten I should have reread my response Apologies. Should have added its a good idea to always keep saline wipes and some soft edged dressings with you to keep risk of infection to a minimum
sounds really positive!😊 although I am now a tad worried as supposed to be commencing MTX injections in March, as my NHS Rheum Cons wishes, aim to get Prednisolone reduction. Heyho..what suits some not always others …
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Prednisilone to Methotrexate/ private Rheumy/too young for PMR. 
Brilliant review with pharmacist
Consultation today
Saw NHS Rheumy Dr Khan at William Harvey Hosp, in Spenser Health wing on NHS last night 7pm now confused!!!
