Just putting this here as I don’t know if anyone can see it on my thread, sorry if repeating myself. UPDATE Just spoke to GP. Not a successful call. When I mentioned neck/arm he says I haven’t got PMR & wants me off the steroids. I’m worried now in case I reduce and I really have got PMR again as well as a neck problem. Ie. Both? Im on 12.5. He wants me to reduce 2.5 a week until I’m off. I argued this was too fast but he insisted as I’ve only been on 4 weeks I can do it. He was annoyed I was on 12.5 as he said I should be on 15. I reminded him he had told me to go to 10 & I put myself back up as I felt awful. He denied he had ever said 10. Wasn’t worth me arguing. He is sending me for an xray of my neck but says if I want a scan I will have to pay private “. Can anyone tell me - can I reduce 2.5 a week after being on steroids for 4 weeks? Thanks.
update PMR or Neck Problem: Just putting this here... - PMRGCAuk
update PMR or Neck Problem
Why did he say you did not have PMR? Did the steroids help when you started taking them? As you have been on steroids for four weeks you will need to taper. I assume as you have had PMR before you have some idea if it could be PMR or not.
Yes, you can reduce that fast after only 4 weeks, it should be fine although it almost certainly will be uncomfortable. You can taper fast - I wouldn't suggest just stopping though.
I replied on the other thread:
"Your doctor could do with some research on PMR and GCA! 20mg was a reasonable starting dose - but then then drop you to 10mg in one go was crackers.
However, I must say that it is quite an unusal clinical presentation for PMR and sounds more like a muscle spasm problem, possibly of the sternocleidomastoid muscle which is then causing trouble in the shoulder and arm muscles. The fact you have a scoliosis is also relevant as that puts a lot of strain on back muscles which would contribute. It doesn't mean you haven't also got PMR but it may not be the primary problem.
Have you any way of getting to see a physiotherapist?"
What he is saying now is far more sensible - but he should have made it clearer if he is now claiming that wasn't what he said and even 20 to 15 is a big step down.
Thank you for your reply. I was going to a physio before I went to the doctor. He was putting an electrical thing on my neck & gently pulling it but it didnt make much difference. My neck has got better on the steroids but its still there. I can feel it sticking. The GP is saying I don't have PMR because my pain in my neck is on one side. I know with PMR its both sides. Thanks again.
Not always - it CAN start on one side before spreading. How long has it been a problem?
A couple of months really bad and I had the pain between the shoulder blades which has gone. I have googled a stretch of the sternocleidomastoid muscle and gently stretched it. It actually feels better and less stiff. I can’t believe the difference. Its still pulling in the shoulder a bit though. I will taper as he says and see what/if pain comes back.
Try heat as well - some people find ice better but it is a question of trial and error. IMHO that is a lazy physio - mine did all her work the old-fashioned way with her hands!
"He is sending me for an xray of my neck but says if I want a scan I will have to pay private “. How rude of him. Respect and ability to relate to patients is fast disappearing. He could have said lets send you for an xray first and see if anything shows up. Scans show things an xray doesn't. Obviously I don't know him but from what you say I wouldn't have a lot of confidence in him.
You know your body best. Its awful when you feel at their mercy. I hope you get some resolution Purplelamp. xx
Its the doctoring by computer and choosing the cheapest option I think. He hasn’t even looked at my neck. Today it was just a phone call consultation. I live in Wales and healthcare is terrible here.
Oh dear. You hear that a lot about Wales. So he can see down the phone line now or across the airwaves. Same has recently happened to a friend of mine who had an uncomfortable area and lump in her neck which had got worse over time. This is in North Yorkshire. She duly filled the online form in and asked for a face to face appt. She still had to accept a phone consult first tho! 6 weeks later she actually saw the GP and got referred for Ultrasound. I get that some things you can probably solve with a phone call but not something that needs to be seen. They certainly don't want to refer you on thats for sure.
It actually wastes everbodies time doesn't it because you will keep going back unless you lose the will which I know some people do.
My daughter lives in N Wales and tried to get past the receptionist to get a blood test. 3 rd attempt success(I told her to get cross). Blood test done and doctor rang to tell her to go to hospital for a blood transfusion her blood was so low. Time HP surgeries woke up to the fact that the majority of peeps are asking for their help and need to be seen 🤨
I have to say that he doesn’t sound like a sympathetic doctor. Is there any other GP at the practise you could see instead of him? I have a good relationship with mine and am allowed to book my own blood tests as I try to decrease my steroid dosage.
No doubt that you can have both. Your GP sounds like the rheumatologist I saw 2 or 3 weeks ago; impatient and brusque, the last thing you need when you are feeling unwell and less robust than normal. I hope that you will be able to access better support.
Can’t answer your question but what a nasty GP.
I once told a dermatologist, to her face, (who kept me waiting for two hours in a skimpy gown), she was blowing me off.
She had ordered a ferritin test to see why my hair was thinning. I had it done, faxed it to her, but kept the copy in my purse. As soon as I got there, she flips open the chart and says you didn’t get the ferritin test, but it was there. Simultaneously I took the copy out of my purse as well. That’s the last time I went to her. That’s when I told her she was blowing me off.
Can't remember if it was you I also said this to recently, but you need to get a cervical MRI..you could have osteophytes (bone spurs) pressing on nerves - which causes terrible pain in the neck and arm. An Epidural Steroid Injection is the treatment if a round of a Medrol Pack (steroid) doesn't help (they try that first. ) I am an old pro at that, unfortunately. At least then you can rule that out and be more firm with a PMR diagnosis.
I had a cervical spinal MRI in January. The results showed some bone spurs, mild stenosis in vertebrae C3 and C4. The gp seemed worried and referred me to physio . Whilst I wait, l have significant pain across my shoulder blades with intermittent stabbing pains . This pain has started affect the top of my left arm and lower into the thoracic area.The pain goes up through and into my neck which sometimes I feel like I'm struggling to hold up.
I think I'll order a "New Body" for my birthday .
I think I'll order a "New Body" for my birthday
Think you’ll find there’s a long waiting list for them as well! 🤦🏻♀️
Thank you. I am saving for a scan
Hi there. I’ve had exactly the same problem with my doctor. I have awful neck and shoulder pain, and all my go says is reduce the steroids. I’m on 8 mg, I had got down to 3 mg but had to go back up due to a flair up.
I found putting one of those ‘scarves’ you can get filled with lavender? And putting it in the microwave then wrapping it round your neck really helped me.
Thankyou, I will try that
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