Diagnosed with PMR last week after approx 2 months of symptoms, ie really stiff in the morning , neck , shoulders , tops of arms and thighs . Understand this is typical , but can’t find info on other random issues like small pockets of pain in various parts of the body , tingling , weird feeling in middle toe like and electric shock , ache around groin on right hand side , itchy scalp , bit of toothache , bit of headache . Wondering if anyone out there has similar issues ? When I mentioned it to Dr’s they didn’t offer anything . I’ve been put on 15mg of Prednisolone , helped after a couple of days but back to aching in the morning, not as bad but present , normal ??? My main panic is GCA of course , can’t seem to focus on anything else at the moment . Would be grateful for any thoughts . Thank you .
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Pastamama
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Hello Pastamama!🙂Would like to give you a warm welcome to this forum☺️. I have found it a great place to be and hope you do too.
I'm not a gp but it sounds as if 15 mg isn't enough pred and possibly send a message to your gp requesting a higher dose. Did you have these symptoms before and explain them to the GP? If not then perhaps you should mention it soon: not because I think you have gca (I don't know)but you need clarification and support from your gp.
Try not to overly worry. 💐
There's plenty of friends here and I hope you will find much help and support from the dear folk here.
hello Wouldlovetorun , thank you for your welcome and support . I’ve never been involved in a forum before , don’t even do Facebook ! Gratitude to all of you out there that take time to read and respond , you’re all stars 🌟
Some get a miraculous response from Pred-but for many it takes a few weeks and/or a slightly higher dose. So have patience - give it a bit more time, but if after 7-10 days you still feel it’s not working as well as it should then you need to speak to doctor.
Have you have the “unusual” symptoms all along -or just since taking the Pred?
Obviously the head issues could be GCA related, so do monitor them -and definitely contact doctor..
Many thanks , the random pain things have basically been all there all the time , the itchy scalp I would say since taking pred. Will discuss with GP this afternoon. Advice much appreciated.
I had quite severe groin pain along with shoulders, hips, back, neck before I was diagnosed with PMR. I have experienced one flare while reducing form 20 mg downwards and the groin pain was the first symptom to reoccur. Followed the flare protocol and held for a bit before reducing further and will slow down my taper now that I am below 10 mg. The groin pain was the most annoying of all.
Just reread your post and you have mentioned these other issues and she wasn't helpful. I'm sorry about this. I would ask for a phone appt and discuss it with her further. x
As I said in your PM - it does all sound quite typical to me! I had a big improvement in 6 hours with the first dose but there were little bits all over that took a few weeks to settle - and the aching/stabbing hip pain was more like 4 months until the trochanteric bursitis that was causing it was all mopped up. The funny shooting pain were something I experienced too - and still do occasionally.
Now - when you felt so much better after starting the pred, did you then rush around like a mad thing catching up on what you hadn't been doing for a couple of months? Even a LITTLE bit???? Because being on pred and the inflammation being mopped up isn't a sign you can just go back to normal - the pred only deals with the symptoms, it does nothing significant for the actual underlying disease process and that chugs along in the background, attacking body tissues and making you feel as if you have flu. You are still a poorly person - and you do much better when you bear that in mind and give your poor PMR-ravaged body some rest and TLC.
Hello ,big thank you for getting in touch again . Have totally taken on board what you’ve said .Makes sense just needed putting in black and white for my worry wart brain to take in !I guess expecting far too much even though in my heart of hearts know there isn’t a miracle cure . Can’t tell you how much I appreciate you taking the time to contact me , best wishes .
PMR is life changing and the mantra is rest, rest, rest. I think we all worry about GCA and every little headache can panic us. The chances of getting GCA are not that high. We have started up a gardening group for people with PMR and GCA you may like to visit. facebook.com/groups/6288051...
Hello Piglette. I always read your helpful and supportive responses to other members. I just wanted to ask you about a point yoy made about chances of getting GCA being not that high......like Pastamama, I worry about GCA. I started with the usual aches and pains as well as a dreadful headache. My GP put me on 20mg pred and within a day I was much improved. Took 4 days for the geadache to go.......I am now on 15mg but get the occasional stab in my head and teeth. Optician says eyes are clear of damage but I still worry. Inflammatory markers are now way down . Thanks for your input.
DorsetLady has done an excellent post on the chances of getting GCA. I was told by my optician that the headache for GCA is the worst headache I could imagine, so the average headache stopped worrying me after that.
Hello PigletteMy pre PMR headache was excrutiating.....I just wondered if any residual problem remained but was reassured by the 15% to 20% also opticians examination. It is too easy to think of every symptom as being a forerunner. I see the doc on Friday for bloods etc and discussion . It's the GP I have most faith in as she was the most clued up with PMR....
In many ways here in the Outer Hebrides we are lucky....small population makes appointments easier. Sadly though any major hospital appointments are Inverness or Glasgow but we can't complain.
Only trip to Lewis in those days was to Stornaway - Christmas shopping - and a doubt we’d get home again, weather as usual… but good old LoganAir got us there!
You’re a long way north, so you know all about the weather… 💨💨
Hi PastamamaWelcome to the club no one wants to join. Here you will find good advice, friendly people and a whole lot of laughter at times too.
I started off at 30mg prednisolone in 2016 and then at 15mg for a couple of months. At those higher doses sleep for me was sporadic. I soon adapted to resting when I could and being gentle on myself. I think that acceptance and not beating yourself up for your inability "to do" is paramount with this fluctuating condition.
I am one of the people who the "2 years'' of treatment advocated by some in the medical profession was an impossible dream. So it's now 2024 and I am on 5mg a day long term. I haven't had a flare for a while now and I think this is because of the long term stable dose 5mg. I have accepted that I may be on prednisolone for a very long time but I no longer see that as a problem. It's allowed me to live my life reasonably well even through some major life events which could have triggered a big flare.
Life certainly changes when you have PMR but we all have it in our power to choose how we think about our condition(s). For me that mental strength has got me through lots of changes. I highly recommend some kind of activity for the mind as well as the body. In my case it's been meditation, only 15 mins a day but enough to reset the "worry box"😂
There is a great deal more to PMR than the ESR and CRP. And actually, many patients are told they have "atypical" PMR and most of US would say they have very typical PMR!
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