I have had PMR for 4 1/2 years now. Did get down to 1 mg per day back in October. In September I had a sudden onset of neck pain which would wake me up when I turned my head. The pains would sometimes radiate into my head and no pain killers touched them. (I did post about this a while back and got checked for gca ). Over the months the pains, have eased but there is always something there. I regularly exercise, Pilates and walking and I also do my own neck exercises which do help. If I do something that involves bending my neck over, gardening, cooking etc it becomes very painful all around my neck and shoulder area. I have now noticed aching in my arms and shoulder areas and hips and dreadful tiredness. I saw a new GP this week for a review of all my issues ( constant dizziness for 4 years and nausea and generally feeling yuk). She spent a good time thoroughly going through my notes and in the end concluded she was at a loss. She does not believe I have ever had PMR, mainly due to the fact my inflammation markers have never moved and are very low. I queried why my response to steroids in the beginning was so instant ( I have only ever had pelvic and hip pains previously), she said that steroids could ease a lot of things? She has now referred me to a geriatrician. I now feel totally lost and alone. Should I try a high dose of steroids to see if they touch all the current pains ( another doc, back in December, put me on 15mg for my neck to see if it helped and it was certainly no quick fix as with original pains so I reduced quickly). I am currently on 2mg per day.
Grateful for any thoughts.
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Fimckenz
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GP is partially correct in that Pred can mask other issues; but wrong in her belief you can’t have PMR if you don’t have raised markers. Up to 20% of patients don’t.
If 15mg didn’t help in December one wonders if it will now, but you won’t know until you try. So maybe worth trying for 5 days - if it doesn't help then easy to drop back down.
I’m a bit concerned the constant dizziness and nausea hasn’t been investigated before though - perhaps that will be now.
Sorry, should have said, had loads of checks 're dizziness. Vertigo, ear issues, etc, all finally came back as negative. 2 years ago they treated me for labyrinthitis which made me dreadful !
I do wish they could get over pred being a cure-all! It isn't - although there are other things that will respond well to pred at certain times. Whatever it was, it was inflammatory - whatever your markers were, pred wouldn't have worked on non-inflammatory conditions, and up to 20% of patients have normal range markers. That doesn't mean that they aren't raised for YOU - if your ESR is normally in low single figures it can be very raised but still running about 18 or so and that is still "within normal range".
I would suspect either you might have something inflammatory with a polymyalgic presentation (which includes PMR!) or you have plain old PMR but with myofascial pain syndrome that is particularly affecting your shoulders and neck on top. That in itself COULD cause dizziness - not saying it is - and it also can respond to pred at higher doses - especially in steroid-naive patients.
I hope you get to see the geriatrician quickly and that they order MRI imaging of your neck and shoulders. They need to identify if there is anything going on there that is affecting blood flow and nerves in the region.
After a month of the neck issue with no let up last year, they sent me for a neck and head MRI- no issues. So you think a Geriatrician will be beneficial?
Honestly don't know but they do tend to see things a bit differently from other doctors - more interested in quality of life rather than getting you off medication that works! But even MRIs don't show muscular problems.
As DL and Pro have said , this is a point when you may have difficulty and need more investigation to sort out what is actually going on so the Geriatric appointment will be useful for you.
It may be PMR , as said inflammatory markers aren't everything , and if your original symptoms didn't present in the neck and shoulders but in the hips it can be quite hard for you to know that what you are feeling is PMR or isn't as you didn't feel it there in the beginning.
It is interesting that the 15 mg didn't work well when you tried it before . Again , you can't be sure why. Sometimes it takes longer for the Steroid to work when you increase for a Flare , especially years into your treatment as your body isn't as able to Rebound from a Flare as it was. Sometimes, however, it may not work well because the pain isn't only PMR but comes from a Neuro or Muscular Condition that does not improve well with steroids.
Have you seen any improvement in the Neck Pain with Paracetamol or Codiene before increasing the Steroids?
This can be a good indicator that there may be something else going on that higher pred doses just helped to mask but not efficiently treat.
Maybe trying other pain relief first , and asking your GP about trying a Nerve relaxant or Nerve Pain medication or Night time Medication to trial if Paracetamol doesn't work while waiting for your appointment may help you see if something else is going on.
If other Pain relief doesn't work you could then try increasing the Pred again.
Take notes on what you try and if your symptoms improve or get worse with different medications or Self Care ( gentle exercise and heat pad , graduated pillows that cushion the neck and shoulders at night, magnesium supplements and lotion , increased fluids) these will be very valuable to the specialist in determining your diagnosis.
Have you had a Dexascan or x-rays and been checked for osteoarthritis or any muscle weakness or injury?
Your full body recovery and the possibility that your Adrenals aren't functioning perfectly yet can also add to things like headaches , dizziness , Fatigue and stiffness and these can cause Pain too.
Does you neck pain improve with exercise?
Does it improve through the day , or get worse from specific movements ?
These things can help to rule in , or out, PMR as the Primary Cause.
I have tried many pain killers, none made any difference. Had an MRI last year all ok. Have regular bonescans and last one, 18 months ago was very good. Neck pain does ease a little with the exercises. Neck pain worsens if I bend my head over doing gardening, chopping/ prepping food etc. It all improves as the day goes on, by evening time I am almost pain free? Sometimes I feel like I am going mad!
Again , if you bone scans have been ok and they ruled out OA it is a mystery unless it is part of the PMR .
It still might have a lot to do with muscle / ligament tightness or nerve pain ( with or without active PMR as well) so I hope the Specialist appt doesn't take too long and brings more answers. Good luck
Dont worry you aren't.... Well no more mad than the rest of us. The year before I was dx with pmr I had severe neck pain and limited mobility that I had been self managing for 15years. I was referred for physio and I was already taking full doses of Co codamol and tramadol and amitryipline for fibro and chronic back pain which had no effect. Having not been able to move my neck from side to side and getting nausea and dizziness for a few years (treated by anti emetics and travel sick pills if I ran out) I had pmr pain and within 4 hours of pred I could move my neck. Now at 7mg and my neck has been painful down into my right shoulder which had a numb spot and for me, this time, by mri rather than xray, it was trapped nerve causing the symptoms. However I think the recent pain was different to the pre pmr pain if that makes sense and was dx years ago as Sternocleidomastoid problem that effectively made you feel motion sickness. You do need to battle on. I have now added gabapentin to my regime. Only a few weeks in and not to full dose but I think it's helping, especially my sciatica. But my neck feels a bit more mobile too. So as bee says it's worth asking Dr about other meds that may help. But basically you need a dx as stress and anxiety will only make such symptoms worse. After thought you don't take statins do you?
Very interesting read, a lot of very familiar symptoms. The excersises are the ones I do. Is it normal for all to ease by the evening? I think I will do as Dorsetlady says and try 15mg for 5 days, perhaps that will kick the pain elsewhere if not the neck. I felt so old when she said a geriatrician and quite shocked!
It does sound weird but if they take a quality approach I would see one at 58! Probably in 2 years I will. You can only experiment. If after a week it's not helping you can reduce quite quickly as pmrpro says.
have you tried a muscle relaxant? They work great for me, not so much for PMR symptoms but for my other issues...Flexeril works good but is too sedating for me with a next day hangover but Skelaxin works good without the sedation...worth a try?? If you do give it a couple days not just one, but you should feel results the very first time...it dissolves my back/tension aches and neck headache type stuff pretty fast...I combine with a pain relief pill too....what ever go somewhere else and get a second opinion..
Just a quick update. Went on 10mg and within 3 days most of the extra aches around my hips arms shoulders eased, neck stays the same. Did 4 days 10, then 2 days of 5b and 3mg today, all good just the neck.
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