I am still supplementing my Prednisolone with Brufen and paracetamol. Pain in right jaw and head continues. I am so tired of being in pain. Next appointment with Rheumatologist is July 24. Spoke to my GP who is reluctant to change anything. On 40mg of Prednisolone and I am to reduce it to 30mg tomorrow for another month. Prednisolone does not seem to be helping with this pain. I have seen my dentist and had X-rays. I do have a horizontal impacted wisdom tooth on the right side but that has been there for ever and will require surgery to it removed. Still no idea what is causing pain. 😞😞😞
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AineB2020
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In your previous post you were on 60mg for 2 weeks….whilst investigations were being carried out.
Can I ask what came back from those tests-and how you have reduced since then -sounds too quick…you really shouldn’t be having headaches/jaw pains.
Did the initial 60mg give relief? If it is GCA you shouldn’t be required to add in other pain relief - and if the paracetamol and ibuprofen (which is not really recommended alongside Pred, especially at such high doses) help then I would be querying if it is GCA as we know it.
If your GP is reticent to do anything then they should be contacting rheumy on your behalf, or do you have a helpline number you could ring for rheumy department?
But a bit more information more on tapering so far would help us to help you …and personally I wouldn’t be reducing again until I had medical advice.
Thank you. I had a biopsy and MRI scan and I am still waiting for results on both those. When I saw the rheumatologist he reduced my Prednisolone from 60mg to 40mg for a month. Even on 60mg he was aware I was in pain. His tapering I feel is quite extreme as it is 30mg for a month and then 20mg for a month and then reduce by 2.5 mg every 2 weeks thereafter. I am having some blood tests next week as well. Bone density scan on 11 July. I will contact the Rheumatologist today and ask If he wants me to reduce the steroids tomorrow in spite of the pain. Thanks.
Is the pain worsening? That reduction scheme is very extreme unless he has good reason to think it isn't GCA and wants you off pred altogether. If it might be GCA it is too fast, if it IS definitely GCA, it is FAR too fast and asking for trouble.
it is 3 weeks since the biopsy and I had already started the 60mg of Prednisolone so not really expecting a positive result. I also had an MRI of my head and no results from that either. No news is good news!!
Except once you are on pred, a negative biopsy doesn't mean it isn't GCA - even without pred, the same applies. A positive biopsy is 100% certainty it is GCA, A negative one only means they didn't dind what they were looking for: giant cells in the artery wall, There are several reasons for that because the temporal artery may not be affected - it is used as it is accessible, no other reason. If it is, then the lesions aren't regular and evenly spread along the artery, they form what are called skip lesions with areas with nothing between.
One of my hobby horses is tension in the sternokleidomastoid muscles in the neck which can mimic GCA symptoms. It may not be anything to do with your current state but keeping on top of this is important so you can see the wood for the trees. I thought I was having a flare a few times but my Bowen therapist sorted it out in one session so I knew it definitely wasn’t GCA. It would cause temple and jaw pain, scalp tenderness, headache, pain around the eye and behind my ear. So, keep up the housekeeping on this one whatever the outcome here to avoid panic increases of Pred. Here’s a link
For me, pre Pred/GCA I was an ardent fan of massage and reflexology. After diagnosis , for whatever reason, I couldn’t tolerate them in that I felt much worse afterwards. Bowen was light enough but still effective for me to iron out all the aches and pains from muscle weakness and poor posture. It was also for me time. It’s down to preference but I’d be wary of going straight in for a deep tissue massage without trying something lighter first. Saying that, PMPPro goes for a deeper targeted massage to help with myofacial pain.
Thank you. Sounds like it's worth travelling a little way. I was bothered about trying a massage, as I had a physio making everything worse leading up to my PMR diagnosis. If it works, I can always try massage later, but I don't fancy real physio, as whenever I've done exercises since having PMR, it's never achieved anything, and often made it worse.
I like both - but they each require a good therapist. I had fantastic Bowen ladies in the NE of England, both down to earth realists who called a spade a spade and their therapy reflected that. The Bowen offered here is more "wellness" orientated, bit arty-farty almost. The same difference as between therapeutic/sports massage and hot stone and aromatherapy type massage.
I think for SCM problems I might try Bowen first - though my physios here have done mobilisations that is somewhere between and works well. The trouble with massage is that it releases IL-6 from the knots in the muscles and the muscle fascia and that makes you feel as if you are having a massive PMR flare until it is out of the system.
I think I'll give it a go. I've been massaging my neck - as far as I can reach - for ages, and doing exercises. I achieve a slight improvement, but the next day, it is as though I had never bothered.
yes I think I must have something else going on. My dentist-referred me for a panoramic dental scanning X-ray of upper and lower jaw.
Tomorrow I am going back to see if anything shows up in that and if not then I am going to see if my GP can give me some thing for the pain. Hopefully the rheumatologist will get back to me too.
I ad jaw and forehead pain. Dentist diagnosed acute tmj/tmd. Recommended bite plane 24-7. It has helped considerably. I tend to clench jaws and teeth thru the night.
Acetaminophen (paracetamol in UK) seems ineffective for many kinds of pain, including that from PMR. However, I have found a measure of relief from naproxen sodium (Aleve). Is that not available in the UK? I haven't seen it mentioned in the forums.
is the jaw pain there all the time? or does it come in bursts? does chewing make it worse? Is the headache also on the right side? where is the headache? is it there the whole time or does it come and go? do you get the headache and jaw pain at the same time? I hope your doc is asking these questions. Can you jot the answers to me. This is a terrible situation. I have been there and been involved with others with similar symptoms. All with different diagnoses.
headache on right side only sometimes with jaw pain and sometimes with out. This past week the pain has really never stopped. I am assuming now that this pain is being caused by the wisdom tooth infection and I am hoping that once the antibiotics and naproxen start to work I will begin to feel better.
This sounds like a clear diagnosis and looks like you are on the road to being pain free. But check with your dentist how quickly you can expect the effect of the antibiotics to keick in (maybe some pain reduction in 48 hours?) Don't be brave about this ..if you still have pain in a few days go back. Wishing you a speedy recovery.
I spoke to my dentist this morning and I have an horizontal impacted wisdom tooth with an infection so she has prescribed me a week of antibiotics and referred me for ? Extraction. I spoke to my GP and she has prescribed me Naproxen for the pain. I really do hope that things will settle down and the pain will subside.
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