PMR Symptoms back with a vengeance

[julesster22]

I am battling PMR since 2017 and have tried internist, rheumatologist and now orthopedic. So one seems to know about PMR except rheumy...I started this journey at 10mg of prednisone and Methotrexate. Now I’m on 5mg of prednisone and 1000mg of naproxen. I tried tapering off the steroid for obvious reasons and got to 2mg and then just stopped. Because I’m hard headed. So all the pain came back and moved from my right shoulder to my left shoulder and some knee pain. So I tapered back up to 5mg just today and I can lift my shoulder for the first time in 2 weeks. This disease is just mean but I can’t be in pain for work and now coming off of a 2 week vacation. Thank y’all for listening to my meandering!

[Blearyeyed]

How long have you been on high dose Naproxen and Pred at once ?

This isn't usually recommended as using both Steroids and NSAIDs together can have a bad effect on your gastric tracts and stomach. They are medications that are known to have interactions if used long term together.

Which of your Doctor's recommended it?

It certainly appears that your PMR is still active and you require the Prednisone .

It isn't a failure not to taper off a drug quickly if your Chronic Condition is still active and you need it for Pain Control, it's just a sensible , proactive step to take the treatment at the dose you need.

If your pain is increasing and is only being helped by the Pred increase and use , as is usual with Pain relief on PMR , I wonder why you are on , or continuing Naproxen .

Do you have any other Health issues , or are you on any other medication ?

It might help us to know about this before we offer up any suggestions , please include it if you are happy to add further information

Didn't they suggest you should stay on MTX or a different Steroid Sparer , or did you have medical complications which meant you could not continue with this ?

Looking forward to hearing more of your story , and I'm sure the extra information may help forum members give you extra practical advice and support.

In the meantime , welcome to the forum , let's hope we can work together to make your journey a little easier , with a comforting word or practical help , take care xx

[julesster22 in reply to Blearyeyed]

Naproxen as increased by orthopedic to start weening off of the steroid. I was able to do that until last week when pain returned. Right now today I’m sore but not in stabbing pain. I’ve searched every where for info... I’m hoping to gain info in this forum bc I know now that I’m not alone! Thank u

[Yellowbluebell]

Hi welcome to the forum. I am sorry you have had to start pred again but as i am sure you are aware to come off pred in two years is very fast and not many of us manage that. The average time for pmr to last seems to be about 4/6 years. Some are lucky and will recover in 2/3 years and get on with their lives.

5mg is a very low dose and is under what your body makes naturally. If this dose manages to alleviate your symptoms i suggest you stay on this for a few weeks and then follow one of the slow tapers available on the forum. Others will be along to help once the uk wakes up again. Good luck and please let us know how you get on. YBB Moderator

[piglette]

Why are you taking the Naproxen? I assume it is not for the PMR as it really does not help. As Blearyeyed said pred and Naproxen are contra indicative drugs so should not really be taken together. It sounds like 5mg may be a good dose of pred hopefully, so you can have an enjoyable vacation.

[PMRpro Ambassador]

"Now I’m on 5mg of prednisone and 1000mg of naproxen. I tried tapering off the steroid for obvious reasons ..."

I can think of NO obvious reasons for tapering off pred so precipitately when you have PMR. It is the only universally available means of managing the inflammation and, therefore, the symptoms to allow you a decent quality of life until the underlying autoimmune disorder burns out and goes into remission, as it does sooner or later for the vast majority of patients. On the other hand, untreated it may progress to GCA, the more advanced form which forms a very real threat to vision, leading to irreversible loss of sight in thousands of patients every year who either are not diagnosed or who choose not to take steroids at the necessary high doses.

Would you go to an orthopedist for a heart condition? Of course not - only rheumatologists know much about PMR because it comes under their remit and training. They may not all be very good at it - but they are better than other specialties.

Naproxen is an NSAID - the 2015 Recommendations for the management of PMR specifically warn against the use of NSAIDs. Why? Because they really don't work effectively in PMR and because their long term side effects are actually as bad as those of pred. Almost all the adverse effects of pred can be managed when you know how - naproxen has potentially devastating effects on your gut and your cardiovascular system and, since it doesn't manage the inflammation well, exposes you to the risks of unmanaged inflammation within the body which include cardiovascular disease (so a double whammy there) and increased risk of cancers as well as possibly progression to GCA - and then you will have Hobson's choice: high dose pred or risk going blind.

rheumatology.org/Portals/0/...

You have not gone about managing PMR properly from the outset. You have to have enough pred to get the inflammation under control in the first place - and that means something more like 15-20mg/day initially before then tapering the dose slowly to find the lowest dose that will manage the inflammation until the disease process burns out - which may happen in 2 years for about a third of patients, 40% of patients still require a low dose of pred after 10 years, and the median duration of pred management is 5.9 years.

Methotrexate plus a lower dose of pred is unlikely to work at the start - the methotrexate MAY allow you to wean off the pred later but intitially you need pred and at the right dose. There are no guarantees the mtx will allow a lower dose anyway, it works for some, not for others. One lady in the charity was on mtx and pred and it allowed her to get to 8mg pred per day instead of maybe 10mg. For her leflunomide achieves the desired effect and got her off pred. But it too comes with side effects, all drugs do, and she has had to try a lower than usual dose for the purpose.

On the other hand, I take only pred, it works well for me and after over 10 years I have no identifiable adverse effects: I had had no significant change in bone density after over 7 years, weight gained yes, but also lost again on a low carb regimen, bruising more due to anticoagulant therapy than pred, my skin is fine. Pred gives me a good quality of life - it gave me my life back and there are plenty of others who will say the same thing.

There are things you can do to improve things and possibly manage on a lower dose of pred - a low carb, anti-inflammatory diet will help some aspects and possibly help you manage on a lower dose of pred. Many patients say they notice a difference when they eat carbs or grains or drink alcohol - everyone is different and you have to work out what works for you, maybe nothing does. People who work usually require more pred than those who don't - maybe the stress of keeping to a timetable and working doesn't help.

This forum will tell you stories of living with PMR and ways people have found to live better with it - but the one almost 100% constant you will meet is needing an adequate dose of pred. There have been a few people who insisted they would manage without pred, a couple of people say they have done so - but it seemed a very hard road.

[julesster22 in reply to PMRpro]

Thank for insight to the management part of PMR, my rheumatologist is an hour and a half away for me and that makes it increasingly difficult to make an appointment or go to appointment. I am managing it at 5 mg in a month ago I had it down to three. But it came back. This morning I am amazed I can lift both my arms above my head and I can go back to work today after being on vacation. I will try to follow the guidelines to taper down not just give up which is what I did when I got it down to 2 mg. I guess I’m still a athlete in my head I know I should not be on steroids. But the more read on this forum the more I realize I’m just being stupid and not smart for my body. Thank you everyone for talking to me and letting me share my story on this form.

[PMRpro Ambassador in reply to julesster22]

Different steroids!

Actually many of us don't even have a rheumy - a well-trained PCP is fine to provide the prescription and once you calm down about being on steroids and stop being desperate to get off them and use them properly that may well be all you need apart from maybe an annual trip to touch base and email access for emergency advice.

If you are at 5mg I doubt you need to taper much more - what is important with the higher starting doses we have mentioned is to clear out any established inflammation - and once you do that it does make reduction simpler. It is an ongoing illness - if you leave inflammation it just sets the baseline higher and you start to feel symptoms with only a small reduction of dose as the inflammation is so close to spilling over.

[Julesster84]

Got it thank you so much, made a appt with my GP to bring her on board with my health and medications.