I was diagnosed with pmr in 2020 and have been on Prednisolone since then although l am down to 5mg now l cant get beyond that due to flares. My doctor has said it would be good for me to still come off gradually with the help of Oxynorm to control pain. I am a bit worried about doing this as l might be stuck on Oxynorm then. Has anyone else done this?. I would appreciate your advice.
Many thanks.
Is your doctor mad? If you have PMR the drug you require is steroids not an opioid painkiller.
PMR pain is not the type of pain that you get with say, a broken leg where you blot it out as much as possible with painkillers. PMR pain means there is inflammation that is not being dealt with. Quality of life is a very happy by product of keeping the inflammation under control. Just getting rid of the pain in itself is not the main goal, it’s a signal that inflammation has increased too much. Trying to blot it out with a strong opioid drug is bonkers in my opinion. For one it probably won’t be effective for very long because it isn’t an anti inflammatory. Also it is addictive and will likely make you feel pretty off and have other unwanted side-effects.
Must admit l was a bit shocked at this
The thing is, it is the WRONG drug. She obviously knows very little about pharmaceuticals. Are you able to see another doctor? Are you able to increase 5mg for a week and see if you can hit the PMR on the head? Perhaps we need to find some literature that says PMR does not react to painkillers in general that you could show her.
although l am down to 5mg now l cant get beyond that due to flares
Very good reason for that -it’s probably around the dose your illness needs at the moment - won’t always be, but us for now -and PMR lasts a lot longer than done done think…
Suggest you try reducing my only 0.5mg a time (plain white tablets can be cut) and use a slower twisting method -couple here -
healthunlocked.com/pmrgcauk...
healthunlocked.com/pmrgcauk...
Will also help your adrenals glands if they are struggling.
As for GPs suggestion -no! Your pain is caused by uncontrolled inflammation-and that needs Pred…
l am having another flare at moment even tho still taking 5mg pred the pain and stiffness goes up back of my neck into my head and it is causing headaches and my migrains have increased. Doc doesnt want to increase steroids to control my pain she said they are no good for me long term that is why she suggested Oxynorm so now lm at a loss and dont know where to go from here. Im sure the stress l am under has caused the flare as l care for my husband, he has oesophageal cancer, heart problems, parkinsons and just diagnosed with vascular dementia. I am thinking of just increasing my prednisolone myself for a short time as l dont want to take the Oxynorm.
Have a look at this for dealing with a flare
healthunlocked.com/pmrgcauk...
..and to be honest your GP is worrying too much about Pred - there are many who have been on much higher doses and haven’t fallen to bits!
Me for example -and I’d be more worried about being on an opioid any day…
Have a read of this, especially as you are under stress. Tension in the sternokleidomastoid muscles can cause all sorts of head and neck symptoms including migraines
would you be able to see your reumatologist as they are more knowledgeable in this I hope you get it sorted
Thank you for your advice , l am still unsure what to increase to from my 5mg as l have been on 5mg for a long time except when trying to reduce. I cannot remember the last dosage l was at before that when l had no pain as it was a while ago. I understand you cannot tell me but would be grateful for advice on this please.
Add 5mg to current dose - but when you reduce back down (when you have things back under control) drop to 6mg or 5.5mg just to give yourself a bit of leeway,
hi Teacup! Fantastic advice as ever from our experts, but just a suggestion. Keep a daily diary of your doses and how you feel, where the pain or stiffness lies etc. You can always refer to it then, and also look back and see how you have improved. Keep strong! We will win!
Sounds like your GP is struggling in understanding what is going on and has little experience of treating people with PMR. And as you say the Stress you are experiencing could well have caused a flare , so having Stress added to that by your GP making getting your treatment right difficult doesn't help either.
If you are in a Flare , and it feels, to you the patient. as a flare of PMR and not something different you should use the sick day rules , increase for a short time while you rest and recover , then drop back down to 5 mg , and still pacing yourself work slowly to reduce as DL says.
An opioid drug is not a substitute for an anti-inflammatory drug , it will only block out neurological pain that you might be experiencing, but you will still be in pain if the inflammation isn't being treated.
Just as , if you have neurological pain you will still feel that if you are only treating your inflammation and the neurological pain isn't being treated .
If you are having a flare your GP should do Inflammatory marker blood tests , and you can ask for them to do these, if they are raised you have evidence of the need to increase , but if you have the symptoms anyway the GP should listen and approve it anyway , no matter how long you have been on steroids so far.
Yes , steroids can cause some issues if they are taken long term but so would Oxynorm on top of the steroid side effects. Plus, it won't make it easier for you to taper off steroids unless the thing that is making reducing hard is Neurological pain or another condition which in itself needs diagnosing before a new drug is prescribed , especially an opioid.
If you do need something for Neurological pain there are far better alternatives than opioids. Drugs like Pregabalin, Duloxetine, Garbapentin and a variety of antidepressants that act like muscle relaxants with pain are all better choices and easier to taper off when you don't need them. As well as checking your nutrient levels and using Self Care with supplements containing Magnesium , B vitamins , Zinc and K 2 , and using light stretching exercises to reduce tingling or numbness.
No one wants to be on steroids long term , it's what we need to do until our health condition is controlled and we have recovered enough to taper of it. If you are struggling with the taper a steroid sparing drug like Methotrexate or Leflunomide is the more appropriate option to try. People with Rheumatoid Arthritis can be on steroids for Life , so if your time on steroids below 10 mg with either PMR or GCA is longer than the couple of years that the doctors guidelines simplistically state it is not much in comparison .
Your GP needs help. If you have a Rheumatologist already perhaps you should contact them via their Secretary for an appointment. If you don't, you should ask for the GP to refer you to a Rheumatologist to help improve the options for treatment for your GCA/ PMR and approve the need for continuing steroid use for occasional increases in flares , and to decide if you would actually be edit from an opioid. You could also politely take some print outs from the PMR / GCA UK website to politely offer to your GP , including the relevant posts on taper methods and suck day rules.
It does also sound like it would be sensible to ask to speak to a different GP at your Practice for a second opinion, if there is one , and for future treatment because you are not comfortable with the advice you are being given.
If you, or your GP , feel you are also having pain from other causes that could benefit from a neurological medication then a complete examination by them or a Rheumatologist to diagnose what the issue is so you get the best option for it , not just some random opioid that can be highly addictive and potentially not that useful for what you have anyway.
Hope that helps , Bee
Really really think you need a new doctor! The ONLY medication that works for PMR is pred - oxynorm/oxycodone is a heavy duty opiod medication that doesn't work for PMR, the inflammation that is the cause of PMR symptoms is not relieved by any pain-killers, especially opioid ones which are potentially addictive. Please try to get advice from another doctor.
I was also diagnosed in 2020 and I’ve also struggled to get below 5mg and yes my doctor wants me off them altogether.
I said in my previous post that it’s as if there is some sort of crusade in play😡
PMR needs anti-inflammatories not opiates !!!!!!!!!!
I have read all the amazingly helpful answers to your questions and can only sympathize that you have a GP who does not understand how to treat PMR .
I dont have anything to add to their advice except to agree wholeheartedly that you need to increase your pred to get on top of the build up of inflammation.
I dont think there is much research into exactly what harm can be done physiologically by allowing the inflammation to build up but besides that you will be in pain and unable to cope well with everyday tasks. ( Anyone got a good link on this ? )
I was also diagnosed in 2020 and am currently on 1 -2 mgs.
I cannot come down any further without symptoms and my GP allows me to juggle my pred as and when I wish, but asked me to inform him if I had a bad flare so that he could check my bloods.
Everyone is different and many have to stay on high doses of pred or alternative anti-inflammatories .
I have never ever heard of prescribing a strong opioid for PMR.
It would like giving a person an opioid medication for an eye infection when they clearly need an antibiotic eyedrop.
Yes steroids do have side effects , some of which can be avoided or kept under relative control but it is the first drug of choice in PMR.
I wish you well and hope that an increased dose described by the experts helps.
Long term unmanaged inflammation will cause damage to the inflamed blood vessels and the prescence of long term low level inflammation is known to increase the risk of various diseases including depression and cancer and peripheral vascular disease. Some experts think that leaving PMR untreated is likely to increase the risk of GCA developing.
This is rather good if complex in places
ncbi.nlm.nih.gov/pmc/articl...
Could long term unmanaged inflammation increase the risk of a heart attack too?
novanthealth.org/healthy-he...
bhf.org.uk/informationsuppo....
Thankyou PMR pro......I guessed you might have some useful links !!!!
Oxynorm! Stark raving bonkers. It's a highly addictive drug, not used for PMR, nor should it actually be used for anything else (except under well-controlled conditions). Do you not know that it is Oxycontin? Get a new doc if possible and stay with your Prenisolone.
I have never been diagnosed as having pmr just gca (November 2019) but your headaches sound very much like what I have been experiencing lately. I was in so much pain I could not move my head and struggled to cope with the pain for a week using co-codamol but it didn't touch it and I was literally in agony. Decided to try upping my steroids from my 7.5 to 12 and got relief within an hour or so. I have had no contact with "my" consultant for a year but have my first face to face appointment since diagnosis this month. They will not be happy but I have to be able to function. So basically try extra pred and if it works you will definitely know it's your condition and you're doing right
Hi, Ive had PMR 6 months now and 10mg of Pred seems to be the lowest i can go as 7.5 was ok but still had some discomfort.I was told to take co-codamol 30/500 which im on for lower back pain at the same time.Now the co-codamol does take the edge off it but it only lasts a few hours and as you know opioids can make you spaced out and give you constipation so you are right to be wary of taking them.
To be at 10mg after only 6 months is absolutely fine - half of patients take more than 18 months to get down to 5mg. And from 10mg - only 1mg at a time!!!!!
I was on strong opiods for back pain when my PMR showed itself for the first time. Obviously it was not controlling my PMR pain or I might not have noticed it. And as Pigglet says, that's insane.
I successfully switched from Prednisone to Hydroxychloroquine. I had reduced Prednisone from 15mg down to 7mg but then developed Macular Degeneration. My ophthalmologist suggested the switch because steroid use may cause MD. My rheumatologist agreed.
It took a month to gradually make the switch to HCL, but I experienced no ill effects. Stayed on HCL at 200mg for six months and then gradually reduced over the next year. It worked and I am not considered a PMR patient now. (Until it hits again, I suppose). However, I am still trying to get my muscle strength back and to reduce the weight I gained from it all. I am now 74, and got PMR three years ago this month.
Like DorseLady, i haven't fallen to bits either! Just cruising...But looking at your profile you have other conditions we don't have. It could be the doc is getting twitched about the effect of Pred on one of them. Might be worth trying to pin her down. Exactly why does she want you off? Generalities about its being a very powerful and dangerous drug not good enough. Oh and Oxynorm isn't?
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