During a conversation with my husband concerning my PMR, l told him that l was in pain that day.
He asked why l didn’t request some stronger/more effective pain meds from the GP.
So l made the statement that PMR does not respond particularly to painkillers.
My hubby seemed to think that what l had said was nonsense, as PMR causes pain, sometimes excruciating pain, and so of course it should respond and be alleviated to some degree by painkillers.
He also doesn’t like the fact that l have been on Pred for so long, when he feels l could manage the symptoms with other medications, like painkillers.
I couldn’t really argue against his point of view, as l didn’t really know clearly enough as to why my statement should be true. I am sure l read it somewhere?
I am correct? And if so, can one of you super helpers, explain this, so l can explain to him.
Thanks 😊
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Legsandmore
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Prednisolone works by blocking the effects of certain chemicals that cause inflammation inside your body. It does not cure polymyalgia rheumatica, but helps control the pain from that inflammation.
Normal painkillers like paracetamol are non-opioid analgesic and used to treat fever and mild to moderate pain etc - it does not work for inflammation- although it may help in some add-ons of PMR.
NSAIDs [non steroidal anti-inflammatory drugs] like ibuprofen is used for some inflammatory illnesses, but not usually for PMR.
If you stop the Pred, and your PMR is still active, the inflammation will be allowed to build up again.
But you could add that NSAIDs, which are antiinflammatory, also have long term adverse effects some of which are as concerning as those of pred, if not more so. Pred doesn't damage heart and kidney function which NSAIDs such as ibuprofen do. Ibuprofen will help with some of the add-on pain experienced in PMR but it won't help the pain due to the pressure created by the inflammation - and pred is the most powerful antiinflammatory drug available and removes the cause of the pain. There are other drugs, biologics they are called, but they cost about £15,000 a year and still aren't perfect.
You are totally correct that PMR cannot be sorted out by any old painkiller. Would your husband want an anti biotic if he had a virus? If so, it would not work at all. The same thing is true of PMR and painkillers.
If your hubby won't believe you , the person whom actually has the condition and has done the research he mightn't believe us mere mortals either.Have you tried showing him the PMRGCA UK website and fact sheets to help him get his head around it.
Even though it's pretty darn simple , different types of pain and pain conditions require different types of pain relief.
Steroids in essence act like a painkiller in specific conditions that require anti-inflammatory medication beyond the strength of an NSAID or over the counter medications like paracetamol.
In the same sense that a person with a neurological condition requires medications which help nerve pain relief so they would not be helped by a steroid , aspirin or often paracetamol but may require a nerve relaxant or an antidepressants prescribed as nerve pain relief.
You wouldn't dig a hole with a stick , or drink soup with a fork because it would not work. The same is true when it comes to pain relief only the type of medication specific for the job will do the job properly.
Deep breaths and patient thoughts , take care , Bee
PS: You hubby may believe in his opinion you have been on steroids too long and you could manage on other pain relief. But your husband is not the person with the health condition and therefore has no idea about how it feels or what you could cope with , or should be on. You are the only one whom knows what your pain feels like and what you require because you have the experience of dealing with it.
I'm pretty sure he'd be equally unhappy if you rapidly came off steroids and replaced them with something else and then ended up unable to get up from your bed or chair leaving him to have to do all the household chores.
The only people's opinions that matter are yours and that of a knowledgeable GP. We don't need opinions , we need consideration, support and the odd cup of tea without needing to boil the kettle.
I think it is so hard for anyone that isn't living with PMR to understand. Partly because they haven't done anything like the amount of research anyone with PMR does.
I am still amazed at how hard it is to get my head around everything and I feel like I've been reading everything I can since being diagnosed late March.
I would simply tell him; Painkillers don't work for PMR which is why people (who have tried all the normal pain killers to no affect) are in so much pain before they finally get a diagnosis/trial of Prednisolone.
The fact that part of the diagnosis is based on Prednisolone actually reducing the pain when normal painkillers didn't is evidence in itself.
Perhaps tell him it's a fact "normal painkillers" don't work for PMR but if you don't believe that or would like to understand why for yourself have a look at the Healthunlocked PMRGCAUK forum. Then send him the link.
Then anytime he mentions it ask if he's had a look at all the info on here.
Good luck. 🍀 I think it is hard for them because it's a bit of an invisible condition when on a dose of Prednisolone that works well.
but it’s not even “just” about pain, is it? The stiffness of PMR not treated properly would immobilise you, to one extent or another? I hope your hubby will take time to look through the pmrgcauk web site as already suggested; he will feel better and support you better, once he understands.
Hi there, just to add my comments. I tried to manage my PMR pain by using painkillers only. It didn't work. The amount of drugs I was taking would have sedated a horse but didn't help with my PMR pain! 30mg initial dose of prednisolone and 75% better in 24 hours. That was 2016. Today I am on 4mg a day which is currently keeping the inflammation and PMR pain away. These days I do take other pain meds for my spinal Stenosis and osteoarthritis in my knees but I still need the low dose of prednisolone to keep the PMR in check.
Hello I am interested in what painkillers help with spinal srenosis and osteo, currently severe groin pain 4 weeks now, sometikes radiates to elright hip and back as well, I have tapered to 4 mgs pred now for 3 ms so cant take any other anti inflammatories, and tylenol( acetaminophen) really doesnt help
My Rheumatologist prescribed long acting Tapentadol. I take 250mg twice a day with an option of taking an extra 100mg a day.
I also have paracetamol which I take 500mg x 2 morning and evening. I can then have extra 2 more doses of paracetamol if required.
I also take 25mg of Amitriptyline at night to help with the nerve pain from my impinged nerves. I can take up to 50mg if necessary. I had surgery last year which decompressed the Cauda Equina nerve and gave me back feeling in my left leg and relieved the dreadful sciatica. I have 2 other areas where nerves are impinged. We are leaving these alone at the moment but the Amitriptyline helps with that.
I also have Diclofenac Sodium 25mg tablets prescribed should I get a bad flare. I can take up to 150mg in a 24 hour period over a few days if I have a bad flare. My Orthopaedic surgeon suggested that I also take some Diclofenac as a preventative when I am going to do anything unusual that may cause a flare up. I am going to Versailles in September and so will probably take some then. This is a NSAID so I try not to use these too much but they are a very good drug to have in my arsenal.
I take 4mg a day of Prednisolone but have a protocol to go up to 10mg if I flare and then back to 4mg after 7 days. Haven't had to do this for a while.
I take Cemitidine to protect my stomach from the drugs.
I am very lucky to have a sensible medical team who prescribe drugs to enable me to control my pain which varies from day to day.
My story is exactly the same as S4andy , starting in 2016 with increasing doses of pain relieving drugs including Fentanyl. The breakthrough came in January 2017 when PMR was diagnosed by blood tests and I started prednisolone. I have tapered to 3.5mg and keeping the PMR pain at bay but hip pain /sciatica doesn’t respond to pred so I am taking paracetamol for that.
I think it’s easy for family and friends to think it must all be over or manageable by now especially when we are managing life “because” of the pred. It’s frustrating for us too to have to carefully negotiate the lower doses while our adrenal glands get the message, and we feel worse not better.
This week my own sister admitted to never having grasped the name of my condition, IN EIGHT YEARS!
In my case it was the raised ESR and CRP that confirmed PMR. It took my GP many months to offer these tests while treating me with everything else including acupuncture without any benefit.
Unlike many diseases, there is no specific blood test that will confirm PMR. However, the vast majority of people diagnosed with PMR have raised levels of C-reactive protein (CRP) and/or erythrocyte sedimentary rate (ESR). Unfortunately, those markers are also raised by many other, unrelated injuries, diseases and infections. So the possibility of those common, alternative causes must be ruled out - often via more blood tests - before concluding that autoimmunity is at work. A strong response to a 2 - 3 week-long trial of 15 - 20mg/dy of prednisolone is then used to confirm the PMR diagnosis. It would not be in anyone's interest to prescribe long-term steroids if other, better-targeted medicines were available.
I think a lot of us have the same story - pred to cope with PMR pain, alternative painkillers to cope with other conditions - I also have hip bursitis and just coming out from my first dose of piriformis syndrome (super sciatica!) Depending on the amount of pain I take paracetamol or co-codamol for those and if all else fails I've still got some tramadol hanging around after an operation last year.
Is your husband a doctor shhh Seriously he has no idea you feel the pain he doesn't. Be firm and listen to your body. red is the answer and follow the Pred reduction advise on this site. Good luck !
Having read all the other responses, I would add the following:
The underlying cause of PMR remains unknown (that's why it can only be diagnosed by first ruling out the alternatives). However, a huge clue lies in the fact that roughly 50% of GCA patients also have PMR, and roughly 20% of PMR progress to GCA. Therefore it is believed that GCA is an extreme variant of PMR.
The cause of GCA is known to be autoimmune inflammation (swelling) that narrows blood vessels, reduces the blood supply and - if not treated rapidly - irreversibly damages the eyes or other critical tissues. If a reduction in blood flow also causes the characteristic pain and fatigue of PMR, this may mean that the affected muscles are being partially starved of oxygen and nutrients, and bathed in waste products (eg. CO2) that cannot be removed fast enough. It follows that reducing the inflammation is far more important than merely switching off the pain sensation, using - for example - opioids.
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