Just came across this forum yesterday and wish I’d known about it in 2020! Considered myself reasonably fit and healthy but started getting aches and pains autumn 2020, assumed it was lack of exercise on my part (I’d moved and stopped regular gym). So I joined local gym and started doing classes, aches came and went for a month or so but then got persistently worse and saw GP November. Loads of tests led to PMR diagnosis, 25mg pred daily, referral to specialist. Started taper down after about 2 months, got to 4.5mg and blood markers high again (no symptoms) so back up to 7mg, got to 5mg and markers high again (again no symptoms) so back up plus methotrexate started October 2021. Other than feeling hyper and loopy with euphoria in the first 6 weeks, then a puffy face until taper got going, and a bit of tiredness and weight gain (now going), plus my normally straight hair has gone curly, I feel I’ve been very lucky compared to some folks I’ve read about on here. Of course I’m not out of the woods yet, just keep taking the tablets!
Would be interested to know if there’s any info on possible causes / triggers for PMR? I had the most stressful year of my life just before it kicked off….
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Ozziedays
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‘I had the most stressful year of my life just before it kicked off….”
Therein probably lies your answer, many of us were in similar situation ….. your immune system can only take so much, until it goes into meltdown……and starts running rogue.
Couple of posts might help - from FAQs -if you haven’t read them -
Thank you, very interesting and helpful. I’ve probably also been fortunate to be here in Australia (temporarily here from UK with partner’s work) where health services haven’t really been impacted by Covid so getting appointments, investigations and treatment has all been very prompt and pro-active.
Hi there. It seems that you've answered your own question regarding cause of your PMR , that being the most stressful year of your life. Other factors are said to include injury, accident, genetics....Your reduction from 25mg to 4.5mg was rapid to say the least and I would confidently say that your rheumatologist doesn't understand the implications of this and the yo-yoing of doses. If you can give a timeline of doses it will be helpful.
The experts here will be along to give sound advice (if they haven't already appeared while I've been typing) so keep checking in. You have come to the right place!
Sorry, perhaps not clear, my taper down started after about 2 months at 25mg, then reduced by 2.5mg every 3 weeks (blood tests every 4 weeks) until I got to around 4.5mg several months later. At that point the routine bloods showed an increase in ESR although I had no symptoms.
I’m currently reducing 0.5mg every 4 weeks and have got to 4.5mg again.
That is a better speed of taper - when you go fast you often overshoot the dose you are looking for and find out when you flare further down the line as it all catches up. If you are at 5mg without MTX I would be VERY reluctant to add it in.
My specialist is moving me on to MTX as pred taper down has failed twice at around 4.5mg. She doesn’t want me on pred indefinitely. It’s going fine so far, 4 weekly bloods / review good, now extended to 8 weekly although I can phone her anytime.
There is no evidence nor guarantee that MTX replaces pred. If it did - they would use it from the start. So don't put up with too much due to the MTX if anything does appear. My problems appeared in days.
Well your taper has probably failed twice at 4.5mg because that’s the level your illness actually needs -and many would be ecstatic to be that low after only 2 years.
Think your specialist needs to be more aware that PMR can and does last a lot longer than 2 years!
Why add in another drug with more side effects when you are at such a low level of Pred with almost no adverse side effects any longer -absolute bonkers!
You could try a slower tapering plan -they takes longer to get from one dose to another -that may help - see link -
Welcome! Glad you found us….better late than never. Lots of collective wisdom with these forum folks, and compassion, as we “get it” better than most who do not have PMR/GCA.
I too have PMR (since May/18) which emerged after a number of “good” stressful events (marriage, move and retirement), and a nasty upper respiratory infection. My first rheumatologist insisted I taper according to her schedule and I immediately flared and had to go back up to starting dose (20mg pred) for 6 weeks. She accused me of lying and putting up my pred dose “without her permission.” She also wanted to put me on Methotrexate at my first appointment, before I even started to taper! Needless to say I stopped seeing her and was overseen by my GP for the next 2+ years.
I share this story as an example of how some rheumatologists can be unreasonable and rigid, following textbook tapers rather than treating each patient according to our individual needs.
Others have already shared their observations of your quick taper that resulted in raised inflammation markers. Glad you didn’t experience the return of painful symptoms of flaring.
Moving forward, if it was me, I’d only continue tapering the 0.5 every 4 weeks if markers did not raise or no symptoms emerged. Very few pred side effects at 5mgs or lower, so no need to rush to “0”. I would not be on-boarding Methotrexate if I was already at 4.5mg pred.
In fact, as an example, I got stuck at 9mg of pred for 2 years. Each time I tried to lower even .5mg down to 8.5mg, I flared. GP and I discussed it and I was sent to a new rheumatologist who suggested Methotrexate as a steroid sparing agent to help me lower my pred dose without flaring. I was hesitant as I heard MTX did not work for some with PMR, even causing some unpleasant side effects. But everyone responds differently. Thus far I’m on the second week of a 6-week taper down to 7mg with a few, manageable side effects.
All this to say you’ve done incredibly well to get to 4.5mg. Slow and steady is the way to go. It seems all doctors want us off of pred asap, but at times we must advocate for our health. As you move forward I’m wishing you a smooth taper. Keep us updated please.
Thank you for taking the time and trouble to reply, it’s so helpful to hear of others’ experiences.
I think I expressed myself badly in my first message as some people read it as if I had tapered down from 25mg to 4.5mg in two months when in fact it was around 10 months.
Although far away from home and my normal support networks, I think I have been very lucky to be here in Australia when my symptoms started. I should preface what I am about to write by saying that I worked in the NHS for 42 years and have always had confidence in its services. However, waiting times were a big issue pre Covid and are even worse now.
Here, I can usually see my GP within 48 hours for non urgent appointments, and I had a choice of rheumatologists working in this area. I’ve been very happy with the investigations, explanations, and ongoing monitoring throughout. Any tests ordered (e.g., bloods, bone density) are done same day or next day with results reported within 24/48 hours and electronically shared between my rheumatologist and GP regardless of who has initiated them. This keeps everyone in the loop - from some of the stories I have read people seemed to going round in circles with different doctors not passing on their findings which must be hugely frustrating as well as time wasting.
One of the links mentioned Kate Gilbert’s book which I got on Kindle and am about half way through. I’m finding this an extremely well balanced and informative read.
What I’m taking from all of this - and it’s only been two days since I discovered the forum! - is that my current stage of taper needs to be taken very very carefully. So far, I’m feeling fine, I’ve had no side effects from the MTX, and bloods have all been good to date. I feel very fortunate indeed.
I do hope that your own taper down plan is successful, and thanks again for sharing.
Thank you for the detailed timeline of your reduction of pred and your physical responses to the reductions. I was diagnosed in January. The 20mg of pred were like a miracle removing the pain and stiffness. I've been able to see future perscription dosages and each is reduced by 5mg and then 2.5 mg, not waiting fir blood test results. Your information and many others' dedcriptions of their reaction to dosage reductions help me prepare for future conversations with my doctor.
As others have said think you’ve answered your own question - stress is known to play a significant role for many prior to PMR diagnosis. Enjoy your time in Oz ( son lives north Brisbane) and good you’re getting the health care you need. Is the Methotrexate helping? I’m about to start it!
It’s too early to say re MTX but it’s not giving me any side effects that I’ve noticed so that’s something! I’ve been taking it for about 5 months, started at 10mg weekly then increased to 20mg alongside my tapering down pred. I’ve never noticed any PMR symptoms on previous tapers, it’s always been the doctor phoning me to say come in, your latest bloods need discussing. I guess if I get no symptoms and no phone calls in the next few months then something is working but whether it’s the MTX or my body just adapting to the taper, or my PMR calming down, who knows? My next scheduled review with rheumatologist isn’t till May (unless something crops up) but I’ll see my GP before then.
We’re in Gold Coast, Brisbane is less than an hour up the road, in fact my other half is there now at his choir practice, it’s a small world!
Re stress, from mid 2018 I had the most challenging two years of my life and looking back it must have taken its toll on my health. Perhaps something in that was the final straw for my immune system, About a year ago I discovered mindfulness and meditation and find these really helpful, I’d recommend them.
Pleased you’re managing to take the Mtx without side effects. That’s my concern as I can react so badly to prescribed meds. I’m trying to be optimistic but hard after 9 years. Have to wait and see. I’m on 8mg pred, second time around, and tapering isn’t as straight forward as first. I have GCA as well.Sounds positive so far for you and that’s great.
Son and family are on the Sunshine Coast. They’re currently downsizing now the girls are making their own way in life. One finished Uni and moved with paramedic partner to NSW where his work took him. She’s started her own business in architectural design and doing well so far. The other granddaughter is halfway through her studies in Brisbane. We used to get out regularly but hubby’s poor health put a stop to that. They’ll be coming over now borders have opened. Anyway I digress!!
Good luck with your tapering and hope you’re managing with the heat out there. I used to do Tai Chi before lockdown - anything like you’re doing too is good for us. I do an online Yoga designed for the disabled and the teacher is excellent on the mindfulness aspect. She makes it great fun too.
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