still in pain.

[AineB2020]

Hi

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. 😞😞😞

[DorsetLady PMRGCAuk volunteer]

Oh dear,

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.

[AineB2020 in reply to DorsetLady]

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.

[DorsetLady PMRGCAuk volunteer in reply to AineB2020]

Actually at higher doses you can reduce quite quickly -but not when pain exists! Unless he thinks it’s not GCA… let us know what he says please

[PMRpro Ambassador in reply to AineB2020]

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.

[PMRpro Ambassador in reply to AineB2020]

You mean a temporal artery biopsy? When was that? The results should be available in a week or two at most. Were you on pred before the biopsy?

[AineB2020 in reply to PMRpro]

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!!

[PMRpro Ambassador in reply to AineB2020]

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.

[PMRpro Ambassador]

I agree with DL and have the same questions.

[SnazzyD]

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

healthline.com/health/stern...

OtherwisevI agree with DL in that it sounds like you’ve reduced a bit too fast

[AineB2020 in reply to SnazzyD]

Thank you so much for this information.

[Sharitone in reply to SnazzyD]

Would you advise Bowen therapy in preference to massage?

[SnazzyD in reply to Sharitone]

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.

[Sharitone in reply to SnazzyD]

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.

[PMRpro Ambassador in reply to Sharitone]

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.

[Sharitone in reply to PMRpro]

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.

[piglette]

How do you get on with the painkillers you are taking? Do they help at all?

[AineB2020 in reply to piglette]

They do. Brufen works better than paracetamol.

[piglette in reply to AineB2020]

Painkillers are usually pretty useless for PMR, so it is quite possible that you have something else that is causing the pain.

[AineB2020 in reply to piglette]

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.

[Missus835 in reply to AineB2020]

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.

[papadapadoo in reply to piglette]

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.

[PMRpro Ambassador in reply to papadapadoo]

It is but it isn't brilliant for PMR either and isn't advisable alongside pred.

[agingfeminist]

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.

[AineB2020 in reply to agingfeminist]

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.

[agingfeminist in reply to AineB2020]

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.

[AineB2020]

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.

[Tiggy70]

I hope you feel much better soon. Not knowing what’s causing our pain adds to the stress. Sending you a virtual hug 🫂🤗

[AineB2020 in reply to Tiggy70]

You are so right. I could have hugged the dentist this morning when she said I had this infection. 🤣🤣🤣

[PMR_sufferer1]

July 21st ? Do you mean Aug ? Sounds like it could be GCA but i am no expert so seek prof advise.

[AineB2020 in reply to PMR_sufferer1]

I am still assuming I have GCA. I am having more blood tests next week and then I see the rheumatologist on 24 July.

[PMR_sufferer1 in reply to AineB2020]

Good for you at least your tooth should be sorted.The July date seems a long way away if you have GCA

can you not get it brought forward. As I stress i am no expert vut our health matters.