Hi Everyone, I do hope you are all doing OK. Things Downunder remain relatively good with regard to COVID, however our vaccination roll-out has been a total balls up with only very few people having had the vaccine so far. Good thing we have no community spread at the moment. I have had four weeks on 3mgs pred after alternating 3 and 3.5mgs for a while. I’m now about to start my second week alternating between 3 and 2.5mgs. I’m planning to keep that up for a couple more weeks, all going well. My only complaint at the moment is quite severe neck pain/stiffness, which causes quite a bad headache up from my neck. I’m thinking that it’s not related to the PMR as I get relief from 200ms ibuprofen (I know, I know, not supposed to take that with pred but Rheumy has approved it). My upper arms can be mildly sore but they have been for months and thankfully that horrible shoulder I had a while back has settled down with the needle under ultrasound and physio follow up, which I’m continuing with. So, do you think my neck issue may have been masked by pred and now rears itself, or could it be PMR related? Thanks for always listening.
Just checking in again ...: Hi Everyone, I do hope... - PMRGCAuk
Just checking in again ...
My neck pain comes from Cervical spondylosis, from years of questionable posture at a computer in the workplace. It was visible on an X-Ray. The outlook wasn’t great. A fairly risky operation or painkillers and physio- therapy. You could get a diagnosis and take it from there. It only bothers me intermittently ( wrong pillows etc.). My husband massages my neck for me and this can relieve the horrible back of the head pain. Heat is comforting. I think our arthritis does come out to play as we decrease the Pred dose. Nobody warns you about any of this!My son in law is a GP in Bellingen NSW and is just getting round to being vaccinated. He’s in and out of hospitals all the time.
Thank you Jane, I can cope with the neck. I have had numerous scans in the early days of PMR which showed lower back damage/wear and tear, but nothing related to my neck. Oh well, probably arthritis. Yes, the vaccination rollout has been terrible. My son works in a hospital here in Perth and he had his several weeks ago, but there are so many elderly in nursing homes who are still waiting. Take care Jane.
Your overall management of the Pandemic has been really good though. Shutting your borders was genius. I think Sawtell has only had a couple of cases. Our powers that be just want their cake and eat it. You take care too. I wonder what the history books will say?
Yes Jane, our Premiers have managed things far better than our Prime Minister. People are starting to get cranky about borders coming down now though, and States are now trying to rely on contact tracing and short, sharp lockdowns to control any small outbreaks, which are like spotfires. If we could just get our most vulnerable, as well as our front line workers, vaccinated, we would all feel better. xx
I hope your family managed to dodge the recent floods in that area Jane. I know Bellingen was flooded at one stage.
When we get to such low doses, it’s sometimes difficult to know what pain is related to what.
If you’re getting relief from ibruprofen then probably there is inflammation involved...which could be PMR or just the body’s normal reaction to an injury. Plus you say you have arthritis in neck.
So maybe a combination of all!
But noticed you did have to increase Pred not long ago, so maybe you should stop the tapering for a month or so, and gauge the overall situation.
Can you take another painkiller rather than ibruprofen to see if it’s arthritis?
Hi DorsetLady, thanks for responding. I have tried paracetamol but that doesn’t work. I haven’t been diagnosed with arthritis in my neck but rheumy thinks that’s what it is. When I did that recent increase she was cross and that’s when she told me to take an anti-inflammatory and bingo, it worked. Yes, I will take it very slowly. Would love to reach 2.5 and just sit there.
Well it’s no good her getting cross - if you’ve gone below level you need (or thought you needed). Bide awhile and see what happens. 🌸- you’re on such a low dose anyway.
Agreed. I’m in no rush, can’t actually believe I am this low. Only having the tocilizumab three weekly now, so I am currently in a pretty good spot.
good, long may it continue.
Thank you xx
I get a stiff sore neck from tight muscles - shoulders worst but then it puts stress on the neck and it joins in. It does improve with higher pred - but ibuprofen (nothing else) and heat deal with it to. Not directly PMR - but myofascial pain syndrome is found more than usual along with PMR and is though to be the same pathology as PMR, it is the same inflammatory substances,
Thank you for replying PMRpro. I find that when I relax I can reduce the neck pain. If I do some shoulder exercises it seems to help. Yes, ibuprofen (nothing else) helps me too. Rheumatologist asked me to try to go a few days without ibuprofen and then take two, rather than the one I take more regularly. I just don’t want to take 2 when 1 is sufficient but there might be something to what she says, well she should know, right? She said she does that herself, and it seems to last longer in its affect. I hope you are managing in your beautiful part of the world.
I take 800mg - that is the flooding dose that is supposed to be used for best effect - then you top that up with a lower dose. I had my low back pain on Sunday - took 800mg and sat against the hot water bottle as usual - all gone pain and it hasn't been back so I haven't taken any more ibuprofen at all. I suspect it also irritates the stomach less taken all in one.
Tad parky here, barely over freezing today - after 22C last week!!! Did you get the rain and floods on the east coast the other week?
Ahh, I think that is what she is driving at ... take more in one go. The weather is crazy isn’t it? Your freezing after a gorgeous 22C, and here, we had record heat over Easter and today it is overcast and cool. No, the flooding on the east coast didn’t affect us here in the West. They usually get our weather, rather than the other way around, but those floods came out of nowhere. It has been very volatile what with bushfires and floods. This country can be challenging. I love Italy, and the food!!!! Hope you are getting plenty of that!
The week before Easter was amazing here - down in the low valleys it was summer temps, above 25C! In March! It was the same end of Feb, far warmer than usual, low to mid teens in the afternoon, and then a week of snow and cold in early March. On average normal - ignoring the massive swings. Not good for the body!
Sounds good to me!
Nice to get your update. Speaking from experience I'm pleased you are going so slow at the moment and watching your symptoms closely. In a similar situation a couple of months ago (minus the TCZ of course) and ended up in big flare, so caution is advised! I've had neck problems most of my life and physiotherapy has definitely helped.
If you try the suggested alteration in ibuprofen dosing, do let us know if it makes a difference.
Thank you HeronNS, yes, I am being very cautious but even so, I am aware that a flare could bite me on the backside at any time. I will keep you posted and you take care, I hope things are back on track for you now.
Seem to be, at what is to me a high dose (6 at moment, fingers crossed). Our vaccine rollout has also been very slow, but hubby goes for his this morning! Me next week. Second doses deferred for 16 weeks which concerns me somewhat because pred = lowered immune response to first dose, but needs must. 
Well you are way ahead of us on that score. Hopefully things will speed up and you can start to feel more relaxed. Just cannot believe how far we have come since this time last year when we were only just beginning to grasp the enormity of it all. Onwards and upwards!
Hello again HeronNS, just letting you know that I listened to PMRpro with her advice about how she uses ibuprofen. Instead of taking 200mgs each day with the pred (not allowed by those who know), I took a double dose, and voila, today I am neck-pain free. Let’s see how it goes tomorrow, but thanks PMRpro ...
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