I'm in my 5th year of PMR. Lots of ups and down like most. Classic symptom-pain in shoulder girdle, biceps, hips, knees, front and back of legs etc. Stated pred at 15 mg then at 3 mg December 2023 when covid got me. Back up to 9 mg and currently at 5 mg.In last year developed pain in neck both sides up tendons behind my ears. Quite painful. Can't stand wearing my glasses when its bad. Also, my gums ache and i can get very sharp pains in my front teeth! Like i have dental issues. I don't though. Dentist says teeth and gums are fine. And, i devekoped a hyperpigmented and rough rash down the inside of both arms. These symptoms disappeared when i increased prednisone. I know prednisone can manage many ailments. Are these PMT symptoms.?? Has anyone else had these? Thank you amazing group for your wisdom and support, absent which i can't imagine how i would cope.
Change in symptoms: I'm in my 5th year of PMR. Lots... - PMRGCAuk
Change in symptoms
I Certainly remember the deep tooth and gum pain, also relived by an adequate dose of Prednisone. It wore off along with other unpleasant symptoms, over the years. Lots of skin things and stabbing pains in my eye. Have you been checked for Giant Cell Artiritis? Mine developed in the 5 th year of PMR and was diagnosed by ultrasound. I am 9 years in. I wonder if your optician could suggest something about the glasses? We need to keep on top of this thing. Good luck!
Is the ultrasound on the neck? Can my GP diagnose this I wonder? I don't have a specialist. Thanks for information Sheffield Jane.
I think it is time to bring in a Rheumatologist. The ultrasound I had was concentrating on my head but the abnormal cells appeared in my left arm, if I remember correctly. It is very common to develop both, closely related diseases. Let us know how it goes for you.
This is helpful, albeit a little discouraging. I felt in my gut something has changed. I will keep you posted . Thx again.
I am assuming that you live in Prince Edward County. I live in Kingston. I had to "demand " a referral to a rheumatologist. I am 4 years in with PMR and my rheumatologist has been fabulous. Dr. Averns is in Kingston and is wonderful, and he has two younger colleagues in his office. You deserve a rheumatologist!
Thank you for the name! Very helpful. Thank you SoredressageRider.
Thinking about GCA have you tried the chewing gum test?
sydney.edu.au/news-opinion/...
The link takes me to "page not found". But, chewing does not bother me. About 5 months after my diagnoses in 2020, the muscle under my tongue ached a lot when i chewed. The Rheumie I was seeing at the time checked for GCA by running her finger against the hairline at my temples. I felt nothing and she said it could not be GCA, explaining to me that if it was i wouldn't be able to stand the pain. She also told me i couldn't have GCA because i did not present with it.
Does it? That’s odd, although it’s an Australian site it usually works - perhaps your Canadian system doesn’t like it! But if you don’t have issues with chewing nd jaw claudication, then probably not that .
Not sure your Rheumy could definitely say you couldn’t have GCA because you didn’t present with it - and even if you didn’t have it 4 years doesn’t mean you can’t have it now… my temples were never sore, but I certainly had it! Got the loss of sight to remind me… but that’s another story.
Have to say not totally sure about you… but always worth ruling it out as suggested by SheffieldJane
My Canadian system likes it !
Good, must be PEC2’s end then!
My top notch Rheumatologist routinely feels my temporal arteries and hasn’t found anything. It doesn’t have to involve the head, although it usually does or the Aorta. I would not be happy with GCA being dismissed so easily. Any chance of a second opinion?
I am going to ask for a nee Rheumie. My GP is great. But she is a new grad and did tell me that if things became more complicated than she could manage i would be off to Rheumatologist. So Hi Ho, Hi ho, its off i go. Many thanks Dorset Lady. Your DSNS schedule has been a stable psrt of my journey. I was hoping to avoid the specialist.
Works for me here in uk
Hi PEC2 😊
I don’t know about Canada but in the UK your GP would need to refer you to a rheumatologist for an ultrasound. I’ve had a couple, they’re quick and unobtrusive. In my case both negative, but actually that proves little as if they happen to be scanning the wrong bit of blood vessel, GCA won’t show up even if you have it. So I’ve been diagnosed with GCA on the basis of symptoms, which included some of the sort of pains you describe, but also blurring of vision.
It’s confusing because as I taper down I do tend still to get gum pain and stabbing pain around my eyes….but, and it’s a big but….so far these pains clear up after a couple of weeks. My GP attributes them to steroid withdrawal.
As DorsetLady suggests, I do the chewing gum test, and that so far has been fine.
I agree with SheffieldJane, I think further medical opinion from a rheumatologist would be helpful.
All the best 😊
So good to know others have experienced these changes in symptoms. Makes me feel less frightened by them. Its been 5 years. I was hoping things would become more manageable, not more complex. I will talk to my GP about a referral. It will be a long wait. I can't go back to my former Rheumie. She made 3 med errors within a year , all of which i had to bring to her attention. She changed things but was annoyed. Very helpful Nextoneplease.
I hope you reported that? Annoyed is NOT the emotion I would expect to meet.
Having a rhumitologist in my opinion is not the be all and end all in ontario canada. I literally trained mine for my journey and about year 5 she started asking me information. My GP was awesome and always gave me extra prednisone just in case I flared which I never needed.
I moved to London ontario and my rhumitologist was crap and now working on a new young new rhumitologist which also knows nothing about pmr that can last longer. My take is she doesn't want to learn.
I pray she's better with my arthritis that has bloomed once off prednisone.
I continue to try and educate these people.
The link worked forme.
Hopefully I’ve copied and pasted the relevant bit: 🤞
“Save Sight Institute researchers have developed a straightforward ‘chewing gum’ test designed to unmask this important jaw symptom. By chewing gum at a rate of one chew per second the test can reproduce a patient’s telltale pain, prompting further investigation with a blood test and an arterial biopsy to confirm diagnosis.”
Thank you Nextoneplease.
Others have commented on the possible GCA and I can’t say what your issues are with any certainty. However, be aware of problems with steroid induced tooth hypersensitivity and sternokleidomastoid muscle tension. I had both on my journey.
The teeth problem noted by the dentist felt like all my teeth were killing me at the same time but there was nothing to see. All I could do was sit and wait until it died down after being triggered, in my case, by heat. Some with untreated GCA have had teeth pain.
The SKM muscles can mimic some GCA symptoms so it is well worth doing good housekeeping in this department so you can see the wood for the trees. These muscles attach near the ear too.
Here are some links
sciencedirect.com/science/a...
" i devekoped a hyperpigmented and rough rash down the inside of both arms."
At what dose was that? Hyperpigmentation can be a sign of adrenal insufficiency though it would be unusual at above 5mg pred.
"The Rheumie I was seeing at the time checked for GCA by running her finger against the hairline at my temples. I felt nothing and she said it could not be GCA, explaining to me that if it was i wouldn't be able to stand the pain. She also told me i couldn't have GCA because i did not present with it."
Honestly - I have heard some rubbish recently but that truly beats all!!! If only GCA was that easy to diagnose!!! On the other hand - finding specs uncomfortable is a very common things with GCA.
Chewing gum test:
sydney.edu.au/news-opinion/...
nejm.org/doi/full/10.1056/N...
Pain immediately suggests a TMJ problem, after 2 minutes increases the likelihood of GCA being involved.
Both links work for me - though you do go via a rerouting page which is to warn you that you are leaving the HU site.
Thank you PMRpro. I was tapering from 5 mg to 4.5 over a 14 week taper and holding at that for 1 month. I have gone back up to 5 mg because i overdid things and became symptomatic. Things have improved over the last 10 days including the fading of the hyperpigmentation. I expect i should remain at 5 mg, and start the taper again but perhaps try 4.75 decrease. Does that make sense? I will do the chewing gum test and also contact my GP regarding a referral to a Rheumie. I must be honest, given my experience and the stories i hear on this site, i am a bit fearful of a specialist. At least my GP is on board with following HU wisdom. Many thanks again.
Know what you mean!!! But the pigmentation thing is a bit strange - even 4,5mg would normally be taken as enough to function well. If it happens again as you taper maybe it is an endocrinology referral you need.
Forgive my ignorance. I will need to explain to my lovely GP why an endocrinologist may be helpful. I don't understand the connection. This is very helpful. Thank you.
I said in my first reply that hyperpigmentation can be a sign of adrenal insufficiency - a lack of corticosteroid in your body. Obviously while you were on more pred that was being replaced and it only appeared as you reduced the pred dose, Then when you increased the pred again it disappeared again. It may not be that - but it seems a massive coincidence that it appeared as pred went down and went when you took more again. That is something an endocrinologist is most likely to know about.
Sounds like GCA to me. You need to keep on top of this. Like you I have had really bad shoulder, neck and back of lower head pains. Rheumatologist told me to take Paracetamol (8 a day). Pain disappeared very quickly and `i am now down to 4 a day. Although I was reluctant to take more tablets Paracetamol are clearly preferable to a high dosage of steroids.
Well worth a try.
Thank you TedBruno17.
You can read up on my GCA experience after years of PMR here
healthunlocked.com/pmrgcauk...
It seems worth getting checked out to me. Cost vs benefit tells us why GCA is classed as an emergency condition.
I've been on 10mg since 15-Sep-24 and have my Rheumatologist follow up appointment in 4 days to review my case. I was doing quite well until 3 days ago when I started to have some temporal pain again. My CRP has been measured every two weeks and it got down to 1 (my usual set point) but two days ago it was back up to 3 which is a sign that something is going on.
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