My doc has agreed to refer me to rheumatology but i wont be seen for another 6 wks. Current dose is 15mg pred. I am getting a lot of pain in my neck, shoulders, spine with loud cracking sounds and half way down my back on the right side directly inbetween my spine and ribcage. My question is should i manage my own dosage between now and then or see my gp and ask his afvice? At the moment i have 2.5 and 5mg pred to play with.
Also does anyone know what this pain is and if it is related to PMR?
As always your advice is greatly appreciated. Thanks.
Impossible to say - but I would see my GP and ask if I could try a few days of 20mg and see if it achieves a better result. If it doesn't you can drop back to 15mg without any problem. How long have you been on 15mg? If it is just a week or so then maybe you need to be patient - but if longer than that I'd say a trial of a bit more would be a good idea. The latest guidelines
say the starting dose should be "the lowest effective dose in the range 12.5-25mg" so you do still have some wiggle room.
It is possible the neck, shoulder and rib level pain are due to myofascial pain syndrome. It is often found alongside PMR and leads to the formation of trigger points in the shoulder muscles, about rib level and in the low back. These trigger points are felt as hard knots of hardened inflamed muscle fibres within the larger muscle and are concentrations of the same cytokines that cause PMR when they are dispersed through the system. They can irritate nearby nerves and cause referred pain in arms, legs and neck. Doctors who aren't aware of MPS may confuse them with the trigger points in fibromyalgia. They often improve with higher doses of pred, returning as the dose is reduced. They can be dealt with using local steroid injections and also by manual mobilisation by a physio or massage therapist.
I have cracking noises in the back of my neck, along the spine and they are most noticeable after I've pushed myself in an activity. I just assumed it came with the territory. Not sure if it's the same type of thing you are experiencing, but glad PMRpro could help. I'll have to read article too.
The article is complex but interesting. Make a brew, feet up and read.My cracking is also painful mainly but can happen any time. Glad for your support, even though it's not pleasant for any of us.
If the pain is getting worse not better than your doctor needs to try first a slightly higher dose and if that doesn't work they need to rethink the diagnosis. Not just leave you...
Doctor is on leave til Tuesday,and he will ring me then so I am taking 20mg for two days then see how it goes. I agree I shouldn't be left in pain. I've read how so many of us have either not been given adequate meds or left with no real diagnosis, poor state of affairs. Such a shame no coordinated research is being done in this field.
A former GP posted on one of the forums that now SHE had developed PMR herself she regarded the 1 or 2 mg extra here or there on the daily dose in a very different way and finally understood what her patients had told her!
The major difference between the 2 GPs in the practice I saw was the one who recognised fairly typical PMR even without raised blood markers knew how to use Google and often did. The other didn't...
Interesting to see how your former GP finally understood how things are for you now they have or are going through the process of PMR.
I think a certain type of person is often too afraid to step out of their own circle of expertise, two of my own doctors refused to pursue my complaints of pain, refusing to do simple blood tests or even give adequate pain relief.
Now several new ones have replaced the old ones and within two visits I was put on pred with a massive difference...and yes they know how to use Google and use it, thankfully.
PS tried 2 days of 20mg pred and feel better, thanks for your insight.
For me it's usually pain in my spine and a 'need' to bend down to relieve the pain. Sometimes just fastening shoes can make it crack without pain. Doc tested me for RA antibody and I don't have it, neither can I say what triggers it...no logic to it. I can well understand why you cannot say if your pain is PMR or RA. Thanks for your help.
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Stuck in Morocco
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Stuck on two and a half mg.
