I am a bit befuddled so thought I would turn to The Oracle. Apologies for the epistle.
I have been in gradually increasing pain (the air has become blue) in my groin, right hip and leg since July. I increased my Pred from 5 mg to 10 mg but it had no effect. My doctor (from a telephone conversation - all I can seem to get these days) thought it might be bursitis as I have had it before so referred me for a rheumatologist appointment to see if he would give me an ultrasound-guided injection (have had that before). I spoke to Cigna and they agreed to cover it and make me the appointment. My “usual” rheumatologist, Rod Hughes, who used to look after me before he referred me back to my doctor a few years ago, was not free for a couple of weeks and I was in too much pain to wait so they booked me in with another gentleman, who is now Head of Rheumatology. He seemed very kind and listened to me. He did not want to do an injection without an MRI so he ordered that. The results came back last weekend showing I have a labral tear in my hip so rather than give me an injection he prescribed Etoricoxib for me - 90 mg to start with and 60 mg once the pain had lessened, plus Lansoprazole. The 90 mg has helped somewhat. He referred me to an orthopaedic surgeon who I am seeing this evening to discuss the labral tear.
But what has really confused me is what he said about my PMR. He was very interested in all the details - when and how it was diagnosed and what doses of Pred I had been on and am now on, and how I am feeling now. He said 53 was young to be diagnosed with it, and if I still have it now after 6 years then it is unlikely to be PMR (he said that if anyone still has PMR-like pain after 2 years it is likely to be something else). He said he always goes by blood tests rather than symptoms. He arranged blood tests for me and they came back normal. I was on 10 mg the day they were done but normally I am on 5 mg.
He looked at a Dexascan I had earlier this year, the results of which my doctor had said were “as good as can be expected”, and was very worried - he said my bones are in bad shape, at risk of fracture, and he says I need to get off Pred asap. He said to drop by 1 mg every 4 weeks until zero. I told him I thought it needed to be slower under 5 mg but he said no. He said if I wanted to be under his care he would keep doing blood tests. He said each time I drop to disregard any pain during the first two weeks after the drop and go by how I feel in the second two weeks and also the blood test results. He said once off Pred he could give me local injections for any pain and he really didn’t think I had PMR.
He said I must go on Alendronic Acid asap and has written to my doctor to say so. Having read up on AA I am not keen.
So a lot of what he has said is contradictory to what Dr Hughes has told me before, to what my doc said about my bones and also what I have read on the Forum.
Feeling confused, worried and a bit scared about my bones. I have booked another telephone appointment with my doc to discuss the Dexascan again and also AA.
One thing I would say is that since taking the large doses of Etoricoxib my PMR seems to have improved - so now I am wondering if he is actually right and I no longer have PMR but something else! 🤷🏻♀️
But I am still worried about reducing the Pred as he suggests - I have never managed to get below 4.5 mg without a painful flare (understanding that the pain in the first 2 weeks can be withdrawal).
Any feedback would be very much appreciated. Apologies again for the length of my post.
Susy x
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SusyTe
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I have just received a copy of the letter Dr Patel has written to my doctor and the surgeon. Re my bones, it says:
“Osteopenia on DEXA May 2022 (T scores = -1.6 forearm, -1.3 total hip, -2.2 NoF, -0.7 spine)
When the FRAX tool is applied to the DEXA scores above, with adjustment for the trabecular bone score, she has an increased risk of 22.5% for a major osteoporotic fracture & 7.5% for a hip fracture at 10 years. This level of risk requires treatment and I would be grateful if you could consider Alendronate weekly with Ca/Vit D supplements daily. “
🤷🏻♀️ If it is that bad then I am surprised my doctor wasn’t bothered by the DEXA result.
Thank you so much for your reply, DL - I really appreciate it. Will look in the FAQs and talk to my doctor about the supplements. I already take D3000 & K2 spray and Calcium, but I think I need to add more nutrient-rich foods and exercise back in. I had started swimming 3 times a week before this hip problem. If the surgeon can sort it then I can get back to exercise.
I am still confused about his thoughts on PMR (or not) but maybe I should put my trust in him and see what happens.
Well he wrong in 53 being too young, and 6 years is a long time, but as you know from reading on here, it’s not that uncommon. Just because he may not have patients that have it that long, doesn’t mean it not likely…..
If he thinks it’s not PMR, then what? You can’t say it’s not A without offering a B or C…..
As for pain after reducing, would say steroid withdrawal is likely within the first week, 2weeks may be stretching it a bit…. Might be worth trying my slow taper, it can be done in 4 weeks, although 5 is probably safer - attached -
Thank you again. Yes, I thought that from what I have read. I am not going to reduce as quickly as he is suggesting - I follow your tapering plan. After all, it is me that has to put up with the pain, not him.
He hasn’t offered any other possibility yet but he wants to “investigate me”. I would like to know what Dr H thinks. Will talk to my doctor about it all - she may refer me back to him.
Thank you again - I really appreciate you taking the time to reply and giving me the information and your sage advice.
I was on Pred for 7 years (starting age 51). My Dex scores showed Osteopenia tho worse than yours. I too took Calcium, Mag, D3 and K. I made a point of doing minimum of 7500 steps a day. Never took AA. My Dex scans never shifted into osteoporosis range and once I was off Pred they improved back closer to your numbers. I think everyone over the age of 55 has osteopenia because our bones do age. It’s really more about looking at the trend. Would wait until your usual Rheumi is back to discuss. There is no hurry.
Easy answer to that lot - "I don't wish to be under your care ..."
He is wrong on several points - you probably know my views on most of them, age and duration being the biggies. The 2 year myth of PMR (as Prof Mackie describes it) is just that - take out everyone who has had PMR symptoms for more than 2 years and it becomes a very rare disorder!
I would have some sympathy with his adherence to the 2 year myth - if someone could find a realistic option for those of us with Long PMR. I have no signs of ANYTHING other than PMR and it responds to pred, albeit higher doses, and now responds to tocilizumab - which ONLY works on IL-6 medicated inflammation which adds to the PMR evidence. Some of the add-ons to PMR that are due to myofascial pain syndrome will respond to high dose NSAIDs - I get a couple of weeks course very occasionally when nothing else achieves relief so I can more - but by the end of it the bruising is a sight to behold! It is a relief to go back to "just" pred.
Your t-scores are in the range mine were after 11+ years on pred - and the local osteoporosis guru is delighted and said "carry on as you are" - which isn't even calcium supplements as I was having bladder problems, just lot of vit D and a good calcium rich diet.
I can't say what I'm feeling like saying as I'd be censured - but given the option between him and Rod, I know who I would choose. And you could discuss the result with Etoricoxib with him. It isn't a drug for long term use - it leads to an increase in cardiovascular events.
Thank you - I really appreciate your reply. I am going to talk to my doctor about all this and ask to be referred back to Dr Hughes, although I have had a text from Dr Patel this morning asking me to make another appointment to see him. My husband was impressed with him but like you I definitely didn’t agree with some of the things he said. Thank you for the info about Etoricoxib too.
As PMRPro says etoricoxib is not a drug for long term use, also you are more at risk of ulceration or bleeding in your gut if you take etoricoxib with steroids such as prednisolone. The fact that it seems to have helped may of course point to the fact you may not have PMR as painkillers normally do not touch the pain of PMR, it is just good old pred. I would rush back to Rod Hughes as soon as possible.
Thank you. I shall do my best to get back to him asap. Just need to get this labral tear issue sorted first and then will get on with it. I guess he gave the Lansoprazole to help to protect my stomach. I intend to stop the Etoricoxib very soon. The groin/hip/leg pain is now nowhere near as bad as it was - such a relief.
Because of the seemingly positive effect on my PMR pain I am wondering if maybe I have got something else now.
I am under Rod Hughes as well and he just looked at my latest DEXA scan and declared that it was excellent! My GP had remarked it was Osteopenia. Dr. Hughes also said that anyone my age (63) is very likely to have Osteopenia, so the steroids have not affected my bones unduly, despite me hardly being able to walk at all due to OA.
Thank you, Suzy. Glad to hear he says your bones have not been affected unduly. Sorry to hear about your OA ‘though. I am definitely going to ask my doc to refer me back to Dr H.
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