Hi all, just giving an update on my journey ; I went to see a rheumy regarding being stuck on 12mg pred , and my dizziness, spots etc. She said i needed my eyes checked by an optician, then to get a PET scan to check for GCA, and an mri on my shoulder ( she's sure I've not got pmr, " as it clears up within a year". Of course I told her of the experiences of sufferers ( on this forum) of pmr and the likely timeframe of the disease....She slated everyone on the forum and said to drop 1mg per week so as to cause a Flare, and then get bloods done to see what's going on. I had my eyes checked... no issues found thankfully.
However, after all I've read on the forum, I'm really not happy to drop 1mg a week, as I'm in the middle of a slow taper from 12 to 11mg, feeling little pain, and I'm able to work full time, go mountain biking and do weights.
Advice on where to go from here would be much appreciated, as I know others have had the same sort of rubbish from 'know all' rheumys - who've never had pmr
Cheers
Richie
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Find another rheumy!!! Gone in a year my foot! And a PET-CT won't show anything while you are on pred at that level. As an aside - I wonder what Claire Owen would say to that, a leading PMR research rheumy in the Melbourne area.
Now, you say you have no pain? But are stuck at 12mg? Why are you stuck?
It could well be related to this: "I'm able to work full time, go mountain biking and do weights."
Getting to lower doses is not only a case of taking the pred - but it may require lifestyle adjustments as well. Most people who work seem to need more pred to be able to manage and mountain biking - normal bike or ebike? - and weights are not things most people are able to do.
Hi PMR pro, she was very dismissive and said she had dealt with lots of cases, and all cleared up in a year - that's why I do not have Pmr.... also, go back to the UK if I don't trust the health care in Australia.... and it cost me $350 for the 'advice'Ref my activity levels - I know all the advice says take it easy and accept the new normal , which I totally understand and respect - but it's great for my mental well being... it was a normal mountain bike .... 16 miles up in the hills in 30 degree heat!!!
I'll continue the slow taper to 11mg then see if I remain pain free, and hopefully start the drop to 10mg.
I'm on the Gold Coast. It would be interesting to contact that lady in Melbourne you mentioned, to see her view on dealing with pmr Australian style... surely 1mg a week drop to actually cause a flair can't be standard procedure ?
Well it'll do it fairly quickly! Hmmm - heard some strange stories from the Gold Coast before. Was it at the private hospital there? I don't know how the system works in Oz.
Went to Dr in Oz to chat about pmr, as I had absolutely no advice in UK ( waited 7 months to see somebody, without luck, then had to fly back to Oz in January). He referred me to this private rheumy....... who I had to pay for, what I feel was wrong advice.... why would I want to cause a Flare, to see what's going on. I have pmr, as all my symptoms mirrored those reported by others.
Bit stuck now, as I can't go back to Dr and complain about his referred "specialist"
All I can say is WOW! I'd get out of there fast....You don't need someone that arrogant and blocked to be looking after you. A good doctor is happy to listen to all sides before making rash judgements like that and not feel threatened ny patients.
If she’s as rude to all her patients as she was to you, I bet they’ve gone elsewhere after a year -so she doesn’t actually know how long their PMR lasts
Agree with PMRpro, maybe look at your level of activity and moderate what you can, appreciate can’t just stop work etc -but a bit of pacing yourself might help -
Hi Dorset lady, I strugglelļmllto pace, as I really enjoy the hard work and exercise, and I'm able to still do it at present. I expect I'll have to go easier as I taper, because I had a big Flare previously going from 11 to 10.Thanks for your reply
You do need to be careful, or at least aware, because of the effect pred may have on muscles. cycli is a road biker but can barely walk at present, possibly because of the effect of steroids.
Regards activity, you’ve had lots of warnings over the months both from the standpoint of risking flares and needing more Pred than you might otherwise and potential damage. Your replies point towards your enjoyment and keeping your mental health on track, no contest. You hear the risks but are willing to keep going because the evidence that you see is telling you you are ‘getting away with it’. From the outside, it doesn’t sound like you are at the moment to be honest and others have trodden a similar path.
I’m not meaning to be unkind and my concern is the damage you could be racking up, spurred on by the false upper of Pred. If being active is so important to you, I’d be playing a longer game. The day before GCA hit properly I was very fit and loved hiking mountains carrying a pack in tough conditions, sports etc. I was spread thinly both domestically and in my job and loved being on the go in everything. All this was how I defined myself and kept me buoyant. It was taken away over 48 hours and suddenly I had nothing, no career and no psychological crutches. Luckily because of GCA I was on 4 times your starting dose which rendered me incapable of anything. I say luckily because I wasn’t able to thrash myself which I expect I may have done to stay sane. An incriminating example from the past is, even though I was wrecked by chemo, I still made sure I cycled to my next dose 8 miles away over a small hill in the rain to prove I was still in the game. GCA was a hideous hideous cold turkey . Even so, I suffered from tendon and ligament damage and muscle wasting, the former two only making themselves known when I was well under 10mg when the masking effect of Pred wore off. If you keep needing extra Pred because you want to keep pushing yourself you are increasing the risk of issues in the longer term that may not be fixable. I assume you know you are pushing yourself because of the use of 3 !’s in your biking description. However, the risk/benefit ratio looks different for the short term than it does for the long and I’d advise making sure you are making the choice with your eyes wide open. Having lost the ability to get even part way to where I was I’d say, look towards trying to preserve what you have for as long as you can by easing off. If your inflammation hangs about and you end up with GCA that choice may well be made for you and that’s another risk. I would also, try exploring other types of mental health boosts just in case as you get below 10mg and your adrenal glands are slow to re-establish and cycling to the corner is all you can do for a while.
So, sorry if I’ve been a bit forward. It’s your body, your choice, we don’t have a crystal ball and we’re all different.
Hi SnazzyD, thanks for your reply and concerns. It seems that I'm pretty naive regarding the full extent of what pmr entails.
I had almost no input from the health care system in the UK, and my gp wasn't interested or knowledgeable. He said just keep taking the pred, as 15mg is a low dose and wont have any effect.
Literally all my knowledge, is based on this forum, and Dr Google.
I've not been "pushing' myself intentionally, just for mental well being, I just do as much as I can, depending on how I feel, as I thought it was doing me/ my body good, and stopping the muscle wastage I experienced at the beginning of my pmr journey ( I lost 4kg).
I'm tapering to 11mg, and all's good so far. I thought from reading others accounts, that this dosage is pretty low anyway and to keep on living as I am and reducing slowly.... expecting at least 2 years before I get to either a very low dose or remission?
The fact I could be doing damage to my body, and that 12mg could be masking future problems is news to me.
So how do I know, what level of activity I can do,? I mistakenly thought, I just do as much as I'm able on the present dose of pred. The exclamation marks regarding my recent mtb outing, were showing how great I feel on 12mg, not to highlight that I know I'm over doing it.
So.... I can't just taper down and keep really active ??
I think the fairest thing to say is that if you are feeling good it is probably OK but don't try to force what you are doing, no "pushing through" in the belief that is good for you. I'm not sure at what stage Skinnyjonny was back to training for running - certainly long before he was off pred but he started his PMR journey in a wheelchair!
Hi PMRpro, I never over do things, as I'm pretty good at listening to my body...... like eating crisps and chocolate when I feel ill. Not my usual diet, but what my body craves if I get sick. Like cycli, I too was almost bed ridden at the start of this pmr journey. Severe pain in my hips and shoulders, unable to work, and losing weight rapidly.
The hip pain has gone (at present), but there's always a twinge in my shoulders, but not restrictive.
I know you've been on the journey for a long time, and I base a lot of my decisions on your experiences and first hand knowledge.. so I keep taking the pred and hopefully taper down over time without too many adverse affects. .. does that sound the way to go ??
No worries about that..... the big Flare in December showed who's boss ..... as soon as I feel the twinges I kick back. Big day yesterday demolishing walls then filling the skip..... was supposed to do weights last night....... body said 4 hours in front of the TV just chilling.
Thanks for all the knowledge and concern, is cracking having you lot in my life.... and no fee for advice ... awesome
Think the day filling the skip made the gym superfluous!!!! As Snazzy touches on, the rest day after an exercise day is of equal importance. And NEVER exercise if you can still feel yesterday's effects
I'm hearing you.... I felt some twinges around my neck this morn .... so I chilled at the beach and now netflix with my 11 year old.Thanks PMRpro, it's so nice to have people to reach out to
I don’t know what is too much. What might be fine for the PMR might not be for the Pred effects. 10-15mg isn’t high but it’s not insignificant so if it were me, I’d be careful because Pred can make you feel better than you are. Perhaps allow healing time rather than going from one strenuous activity to the next in the same day. You do say that you are happy to go to a plan B in the day but maybe do it a bit more whilst things are unsettled and during dose reductions.
So true. Read my profile. Now hard to get up from bed, can't do sit up or squat. One step at a time going up or down stairs. No balance and legs collapse unpredictably. still on 20mg pred and using leflunomide 20mg to help reduce. that's since june 2021 being diagnosed. leflunomide only last 2 months.
She is absolutely right, dropping 1mg a week will cause a flair. Where do these people get trained? Obviously PMR was not part of the curriculum. Perhaps she could come onto this forum and tell us we are are all talking rubbish if she feels we are all so wrong.
Whilst I really value all the information, advice and experiences here, take it seriously and make sure it influences my chats with my GP....as many have said, we all are different, it's the nature of the disease....and the guidelines and scholarly articles state this.
There's no way I could lift weights, demolish a wall etc etc (and I do sometimes overdo things). This morning I walked ten yards down the garden to fill-up the bird feeders and had to sit to recover when I got back indoors. I'm on 3.5mg, the GP having called a temporary halt to my taper (he's right).
I sincerely hope you are one of the lucky ones on this journey who can zoom through it without too much trouble and retain your fitness. I hoped to be one of those. It's probably because I have both PMR and GCA and it took years to diagnose that I'm were I am now. Good advice here though .
Hi cycli, I struggled badly at the start, painful to even get out of bed, and have had a few flares already. After 9 months, I'm still on 12mg, ( initially on 15mg) trying to taper down and dealing with pred side effects, so although I'm able to work and exercise, it ain't no picnic.
Hopefully I can taper down and get rid of some of the side effects, as the dodgy rheumy said she definitely wants me on the meth .... as that's how she's treated all her patients, and they've all recovered from pmr within a year !!!
Good luck with your journey... I certainly believe my body feels better when I'm active... so keep going with your battle to regain fitness
Cheers Richie... I'd still be wary of too rapid reduction. There is no predictive time to end it. PMR will dictate when. Get rid of useless rheumy. As PMRCanada says you only know after you have overdone it. Take it from me and avoid flaring at all costs. It will extend your journey as yoyoing is the worst thing you can do.
Many others have made some wonderful suggestions. The most important one being find a new rheumatologist. I’m not familiar with Australian healthcare system, but surely you can ask your GP for another referral for a second opinion. You should also share your feedback and experience so others are not referred.
We really must advocate for our health and in this case, forcing a patient to flare to “prove” the the doctor’s diagnosis/prognosis is absolutely unprofessional (and I would dare say potentially dangerous). Unchecked inflammation can put you at risk for GCA not to mention the toll it would take on you physically and mentally. I would be reporting them!
It is a delicate balance incorporating physical activities while tapering pred and trying to avoid a flare. Throw in DOMS and it’s like solving a personal puzzle. Unfortunately we don’t realize we’ve overdone it until it’s too late…but we learn as we go. I could do much more without pain at 9mg than at 6.5mg. Adjustments are ongoing. Perhaps try to find other (less physical) activities that generate a positive effect on your mental health to enjoy on your rest days. Balance!
Hi PMRCanada, thanks for your input, I agree totally. I'm not sure what any rheumy can do to be honest, but I definitely won't be going back to her.
From the little I know of pmr, it's not going away on metho in 1 year , and just because I'm stuck at 12mg after 9 months, doesn't mean I do not have pmr.
I hear you on taking it easier, and I will listen to my body...... I have twinges in my neck, so no weights until they go.
Thanks again for your reply, I hope your journey is a smooth one
I was stuck at 9mg for 14 months or so, seeing a return of symptoms each time I attempted to drop to 8.5mg, no matter how slow the taper. That spurred my GP to refer me to a rheumatologist to try another medication used as a steroid sparer. He agreed to send me to a different rheumy as my first one was horrendous and I refused to go back after only 3 appointments.
My current rheumy is much better and involves me in all of my health decisions. I’ve had some success with Methotrexate this past year but I’ve lowered that dose and am currently tapering down to 7mg pred.
So glad to hear you plan to continue listening to your body. PMR requires patience for sure. Keep us updated.
Good to hear you're finally heading in the right direction... strange how some people just taper monthly with no issue, and others get stuck. The rubbish rheumy said I'd definitely go on metho, but I'd rather not.... however, I'm not sure what damage the pred is doing, as uk gp wouldn't let me have scans, diabetes check or anything.... gone are the days of a family doctor, who literally was like one of the family.
So how are you coping on metho... I've read the side effects are worse than the pred. Would you recommend me trying a spare?
"I've read the side effects are worse than the pred"
It depends on the person. For a small number it works brilliantly and causes no effects that can't be controlled. For others it doesn't cause problems but doesn't help either. For yet others the side effects are so awful they give up - I did but it was really just fatigue that finished me. It is reasonable to try it - it might work for you and not cause problems. But only with a get-out clause.
Hi PMRpro, it doesn't sound a good move taking more drugs, unless they're proven to help... but the dodgy rheumy thought I had vasculitus ( the spots/ bumps on my lower back.. only appeared a few weeks ago) so said I'd definitely need to take metho... as this will treat the skin issue and get me off pred within the 1 year mark.Next step ??
At the time I got stuck on 9mg I had already been on pred 3.5 years. I started MTX in Jan/22, 25mg (highest dose for steroid sparing) right from the beginning (others recommend starting at a lower dose and building up to 25). I was able to lower my pred dose down to 6.5 without any side effects and I know it was working because I had to stop it a few times while taking antibiotics and after 3 weeks my symptoms emerged once more. However the last 6 months have been very stressful with 2 deaths in our family. I also seemed to get all the sicknesses going around this winter, I suspect being immunocompromised due to being on two strong immunosuppressants. My markers were up and down each time I got a chest infection or diverticulitis flare and so was my pred dose.
I’ve recently re-evaluated my MTX with my rheumy who said I could stop it all together (you can do that with MTX unlike pred), or lower the dose and extend the time between injections (usually taken weekly). See my recent posts.
I’ve decided to continue with the MTX at 15mg every 10 days. I settled at 7.5mg of pred when starting this new regime and am currently tapering down to 7mg.
You never really know how your body will process the MTX until you try. I was one of the fortunate ones who had no side effects AND it helped, however it did also make me more prone to both catching and slow to heal from infections/viruses. You are still relatively early in your journey so I understand your hesitancy to onboard another medication.
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