Anyone out there

[katkawon]

Anyone using alternative treatment for PMR other than pred? I have been off of it since February and my pain level is a 4 which is okay with me. However if a debilitating flare up occurs I will have no choice . Fingers crossed.

[DorsetLady PMRGCAuk volunteer]

Hi katkawon,

As has been discussed many times on here there is no alternative to steroids, and they only address the inflammation side of the illness, not PMR itself.

I'm sure some people do manage without them if their PMR is not too rampant, and certainly in the past when it was not so readily diagnosed, many were told by doctors - it's your age - and not given medication.

However, as we now have a very reliable, although not particularly pleasant drug to control the inflammation why look for something else.

Your pain level at 4 may be perfectly manageable without Pred, but you do need to be aware if the PMR is still active then that could escalate.

[katkawon in reply to DorsetLady]

I do realize that. Fingers crossed

[PMRpro Ambassador]

I lived with PMR for 5 years without pred - not out of choice. The stiffness and mobility problems I managed with daily aqaufit classes at a level I could cope with. I also had Bowen therapy and my osteopath helped too.

But the pain was something else - and nothing relieved that, especially the bursitis. Nothing would induce me to go back to no pred. I suppose if, as so many doctors claim, it lasts 2 years that is OK. 13 years on and I still have PMR - I know because the symptoms return if I go too low. And even without reducing I had a flare at the beginning of last year.

[pammy_hyland in reply to PMRpro]

No I've had it for 6 years + now and have tried everything to get down to 0 but I get as far as 4mg and Ive told my GP I'm staying on the maintenance dose of 5mg for life now as I feel amazing on that and have managed to loose all my steroids weight at last and do at least 10,000 -20,000 steps per day and even made it up and down Snowdon just ! I'd rather live a good life with it all controlled than just manage ! Xx

[katkawon]

I pray that it only lasts 2 years .I am one year in. Time will tell. Take care. 😊

[pammy_hyland in reply to katkawon]

There is hope even with it I'm six years on and lost loads of weight eat nutritional diet that helps alot and have worked up to between 10,000 & 20,000 steps a day and even clI'm bed Snowdon last year so never give up I was 1 step away from a wheelchair 6 years ago and I'm 63 years old now .You must just make life good for you now xx

[Hidden]

Altho folks here disagree with the possibility, I have been successfully using diclofenac for pain. I'm currently down to 12.5mg on prednisone, and SED is now low, but there is still pain without the diclofenac. My rheumy thinks things like NSAIDs have been denigrated for so long for PMR that they just are never tried anymore.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

We don't disagree out of hand, and some if us who were undiagnosed for a long time - in my own case 18months - found that NSAIDs did absolutely nothing for the pain/inflammation.

I did have GCA as opposed to PMR, a much more life affecting illness (not that I'm denigrating PMR), and I'm sure some people do manage to get through without Pred. But all I would say is, that if the inflammation is not controlled sufficiently- and NSAIDs don't control it as well as Pred - then if it is GCA or if PMR morphs into GCA, your sight is at risk.

Lost sight in my right eye, despite taking the recommended (and very often exceeding) daily dose of NSAIDs.

[katkawon in reply to DorsetLady]

You are right the loss of eye sight is much more debilitating. Best of luck. Take care.

[PMRpro Ambassador in reply to Hidden]

Don't disagree with the possibility - the guidelines used to say mild cases could be managed with NSAIDs but the most recent ones

rheumatology.org/Portals/0/...

say in Recommendation 1 that they STRONGLY recommend using glucocorticoids (GCs) not NSAIDs.

There is a whole load of fuss about the side effects of GCs but they are no worse in many cases than those of NSAIDs which can also be horrendous.

One lady took 3 doses of ibuprofen as instructed by her GP - and ended up in the ED with a gastric bleed. Not nice - and potentially fatal. Long term use of all NSAIDs increase the risk of cardiovascular, renal and gastric problems.

I've had PMR for 13 years - I hate to think what the state of my stomach would be like by now! Ibuprofen didn't work - was never offered diclofenac but it can be nasty stuff.

If you have pain that is managed well by diclofenac - I wouldn't be too sure it is "just" PMR. NSAIDs do help with the add-ons sometimes.

[katkawon in reply to PMRpro]

Perhaps they work because my pain is a result of something else. I am not on prednisone. That would be great. Last year when I was having a pain crisis ibuprofen didn't touch it only relief was the steroids. I don't take ibuprofen daily but when I do it works. Hoping I remain status quo. Thanks for you input.

[PMRpro Ambassador in reply to katkawon]

Diclofenac (not sure about other NSAIDs) works well in ankylosing spondylitis which is sometimes confused with PMR in the initial diagnosis. It responds better to other drugs although it will respond to pred too just to confuse things. There is a choice of 5 different biologics - so it may be worth questioning your doctor if you struggle to reduce your pred.

[piglette in reply to Hidden]

Hi Augeydoggy, history shows that pred works as a wonder drug for PMR while NSAIDs do not. Also they may appear to work because they are helping pain for some other reason which we think is PMR and it isn't. If your rheumie looked at the drug data they would find that pred and NSAIDs are contra indicative and it is recommended not to take both together. My GP is totally unaware of the effects of steroids and NSAIDs if it comes to that.

[Chrob]

Sorry ,but nsaids did absolutely nothing for me .

[katkawon]

Ibuprofen does take the edge off for me

[Hidden]

My rheumatologist even considered not using prednisone and just going with diclofenac, since it is a much safer drug. But he wanted the SED rate down as quickly as possible, since I began at around 80, so continued the prednisone and added methaltrexate. As I said, the SED is down, but pain is still there without diclofenac.

It's pretty rare for diclofenac to work, and there are other pain killers that also rarely work, but still worth trying - I get some relief within hours, and full relief within 24 hours, so a 1 day trial should let the patient know if it will work or not. It's also rare for prednisone not to be effective on the pain, but I have that issue as well.

[piglette in reply to Hidden]

There have been articles saying that diclofenac is as dangerous as the NSAID Vioxxx which was withdrawn from the market. I would not say diclofenac is a particularly safe drug, it is associated with cardiovascular problems and strokes. Personally I would prefer to take pred than diclofenac.

[jwb43]

Different types of pain killers and Benzdopines help my pain a lot. And the only symptoms that fit me is PMR.

[piglette in reply to jwb43]

Hi jwb, if benzodiazepines are helping your pain a lot, it is unlikely the diagnosis is PMR. There are several other things that have similar symptoms to PMR, such as fybromyalgia, rheumatoid arthritis, vitamin D deficiency ..... Have you been diagnosed with PMR?

[PMRpro Ambassador in reply to jwb43]

PMR is just the name given to a constellation of symptoms - and there are several underlying causes. The variety we mainly discuss here responds to corticosteroids - and rarely to anything else.

[jwb43 in reply to PMRpro]

Well my condition does respond or steroids but the side effects are too unbearable for me to take steroids. It started to affect my heart much less many other things. So I'm stuck with trying to find other ways to manage the pain. Fortunately there are several things that work. But none of them are things that I want to take long term so I just have to alternate different things different days of the week. It's never an ideal situation no matter what you have to take .

[piglette in reply to jwb43]

Hi jwb, what dose of steroids are you on? As I said if you find other things such as benzodiazepines manage the pain it is likely you may also have something other than PMR. Benzos can help fibromyalgia. Has that been considered?

[jwb43 in reply to piglette]

I am not on any steroids. I cannot take them due to the side effects. All other types of auto ammuine conditions have been tested for and nothing seems to fit. There is no inflammation in my blood work CSR sed rate is very low. Could be atypical PMR? Been 4 years now since a surgery started it.

[piglette in reply to jwb43]

Hi jwb

Perhaps you do not have an auto immune disease. As I said fibromyalgia is similar in symptoms to PMR and responds to benzodiazepines. Was this tested got? Is your pain spasmodic or continuous?

[jwb43 in reply to piglette]

My pain can be both. I don't think it's fibromyalgia because I have none of the other symptoms I have no brain fog no fatigue nothing else in fact except for muscle pain I feel normal. The more I try to do the more it hurts it's gotten to where I can't walk very far or sit for very long or do much of anything anymore

[piglette in reply to jwb43]

Hi jwb, from what you say it does not sound like typical PMR. As an autoimmune disease one symptom tends to be extreme fatigue. It sounds to me, although I may be totally wrong, that what you have may be nothing to do with an autoimmune problem.

[HeronNS in reply to jwb43]

Hmmm, did you doctor check for all the other things which can cause similar symptoms? I think it's "differential diagnosis". Because one of the key things about PMR is that it doesn't respond to anything else. I'm so sorry you've had such problems with the pred, though. When it works without serious side effects it's good!

[jwb43 in reply to HeronNS]

Yes I wish I could take Pred. I may have more than one thing. But I have undergone every test you can imagine over the last 4 years.

[PMRpro Ambassador in reply to jwb43]

What I'm saying is there are several things that cause the symptoms - some of them also respond to pred, especially at higher doses. They also respond to other medications - it is typical of PMR that ONLY pred works for it but it isn't a case that a response to pred means it IS PMR.

[jwb43 in reply to PMRpro]

YEs it is quite the mystery!

[katkawon in reply to jwb43]

I have wondered if I truly have an autoimmune let alone PMR as I do not have the debilitating fatigue that everyone else does. The pred helped right away with the leg and shoulder pain. Presently not on them.

[Hindags]

I find a bit of bourbon whisky is pretty helpful if my back and sciatica are bothering me as they are these days. My PMR pain seems pretty well controlled, but the last several weeks my lower back and down my right leg are hurting towards the end of the day. It feels like familiar old pains but with new fatigue and weakness. Getting off my feet and a bit of alcohol seems to help.

[piglette in reply to Hindags]

Hi Hindbags, I am more for cognac or Armagnac!

[PMRpro Ambassador in reply to Hindags]

Sambucca - despite her name - is the PMR Brandy Queen ...