New to PMR and confused

[tweety_pie]

Hello...new to PMR (diagnosed January 23) and grateful to PMRGCAuk pointing me this way. What a journey already. After the euphoria of pain disappearing almost instantly, I'm now confused at managing symptoms - PMR or steroid side-effects? After a reduction 15 to 12.5mg over 2 weeks ago, jaw pain, water retention in face, swellings on side of forehead, chronic temporal night pain (controlled by ibuprofen at first, then a single Naproxen) and onset of blurred vision (Naproxen?) meant I was tested for GCA this week - eyes, ultrasound, bloods - all negative. So, good news! But the symptoms remain. Did I mention fuzzy brain?

There's so much on this hub to read which I know will be helpful. If anyone can point me in direction of how best to manage self-care and recognise side-effects? Already I'm beginning to wonder if the pain of PMR is worse than steroids. Magic wand, anyone?

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Maybe have a look at this intro post -

healthunlocked.com/pmrgcauk...

The patient information leaflet in your medication box will list every conceivable side effect, but if you specify what in particular we can advise further., but your issues do sound very GCA-ish.

Also have a look through the FAQ's if you haven't already

[tweety_pie in reply to DorsetLady]

thanks for link… and direction to FAQ’s. I will gather my little energy and read!

[DorsetLady PMRGCAuk volunteer in reply to tweety_pie]

Don’t try and cram too much in too soon, you’ll just wear yourself out..and get overwhelmed . As for FAQs just look at what you need to initially, and then go back to them as and when.

Most information will mean more in a few months than it does at the moment - and if you’re not sure about anything then just ask..that’s why we are here.

[PMRpro Ambassador]

Hi and welcome.

None of the tests are 100% certainty - except a positive biopsy but negative ones of any sort don't mean it ISN'T GCA. You can have normal bloods, they didn't find what they were looking for - maybe reduces the likelihood but doesn't rule it out entirely.

You mention the euphoria of the pain relief - I hope you didn't take that as permission to go back to normal living? Pred isn't a cure, the actual disease process is still ongoing in the background and makes you feel a bit flu-ey. Don't give up everything - but rest is important to give your body a chance.

What sort of jaw pain? The other signs are typical of pred in the early days - try cutting carbs, especially processed ones which will cut both simple carbs and salt, both of which contribute to fluid retention when on pred. They should settle some with time.

[tweety_pie in reply to PMRpro]

thanks for all. Jaw pain now is much less by there in chewing bread etc. The dosage was increased to 40mg for a couple of days whilst testing going on, then reduced to 15mg. Im wondering if the sudden increase and reduction may have made me feel temporarily worse?

[DorsetLady PMRGCAuk volunteer in reply to tweety_pie]

Yes - quite likely….but do monitor jaw pain…. It is a classic symptom of GCA - but could also be TMJ/TMD issue -

nhs.uk/conditions/temporoma...

[PMRpro Ambassador in reply to tweety_pie]

Probably - and as DL says, watch that jaw pain. Their tests might not have shown anything but symptoms always trump lab results.

[piglette]

Normally painkillers really have very little effect on PMR. Steroids are the only thing that works. Also it is not a good idea to take NSAIDs such as Ibuprofen and Naproxen with steroids. PMR is life changing and you have to appreciate that you have an illness which has to be respected. Steroids are a wonder drug but they are not a cure for PMR. The mantra for PMR is rest, rest, rest.

[tweety_pie in reply to piglette]

thank you… had no idea ibuprofen not good with steroids…is paracetamol a better option, although I see you say painkillers not recommended in general

[DorsetLady PMRGCAuk volunteer in reply to tweety_pie]

You can take paracetamol for other issues - many do, but usually under doctors supervision - and sometimes for steroid withdrawal symptoms - but as stated they will do nothing for the PMR itself. And NSAIDs are not recommended, unless its topical gel used very sparingly.

[PMRpro Ambassador in reply to tweety_pie]

It is the fact that both pred and NSAIDs can irritate the stomach and sometimes cause bleeding. The occasional dose of an NSAID, taken with food, is probably OK but not regular use. It is less of a problem if you are already on a PPI (omeprazole or the like) or you can take one if you need ibuprofen more than once or twice

[tempusfugi in reply to PMRpro]

It's interesting because, a friend of mine who developed PMR last summer, was told, by her Dr, that she could continue taking both paracetamol and ibuprofen (she used to take them before because of OA).

I warned her against doing so, but she continues along this path. She is also taking AA and Lansoprazol to protect her stomach. She started on 15mg and is now down to 3mg, so hopes to be clear of PMR by this summer. 🤔 I really hope she is but...seems awfully quick to me. Mind you, she was diagnosed v quickly so I guess that might have helped. She said the relief Pred gave her from her OA problems was superb but they are now coming back, as she lowers her dose.

[DorsetLady PMRGCAuk volunteer in reply to tempusfugi]

As she in on a PPI then probably okay with ibuprofen-so long as she isn’t taking it too often or too high a dose-and GP is monitoring for issues.

At higher doses Pred will mask the OA pain so she shouldn’t have need either ibruprofen or paracetamol then —

and yes at lower doses OA pain returns with a vengeance.

As for being off Pred this summer -who knows -but there’s a lot of difference between 3mg snd zero!

[tempusfugi in reply to DorsetLady]

Thanx, DL. My friend has been taking Ibuprofen ever since diagnosed last year, daily I mean. I don't know what the dosage is. She has yet to see a Dr (only phone calls thus far) and, although monitored at the beginning of diagnosis, I understand that has stopped now. Her surgery, like mine, is simply overrun (we're both in the East of England, though different counties). The Dr who diagnosed her so quickly has, sadly, now left her practice.

Just as an addendum, my friend doesn't discuss PMR v much or research it. I think she may think I'm OTT on the subject, but I do find it interesting as well as a horrible condition. She does what the Dr tells her to do without querying anything🤨

[DorsetLady PMRGCAuk volunteer in reply to tempusfugi]

oh dear -well let’s hope she’s okay then. Some people don’t want to know too much about their illnesses - a bit “head in the sand” at times -but if she doesn’t want to know, she doesn’t want to know…

[tempusfugi in reply to DorsetLady]

Yes, and fair enough, we are all different! We've known each other for 60 years this year and, although very different characters, she is a very dear old school friend😊

[PMRpro Ambassador in reply to tempusfugi]

Ditto to everything DL has said. 3mg is a big dose in PMR land!!!!!

[Bramble2000 in reply to tweety_pie]

I have taken Morphine, Buprenorphine patches, Pregabalin and non of them touch the PMR pain. Only the steroids do because they dampen down the inflammation, x

[Missus835]

I'm glad the Pred gave you the hoped-for result. This does not mean you go back to your former activities. If you're good one day, don't over-do as you will most likely pay for it the next day. I started at 20 mg. Pred in Jan 2022 and now on higher dose (50 mg) because they suspected GCA back this January, 2023. Biopsy showed negative. Ophtamology showed negative. So now I'm in the precarious position of trying to wean down to 20 mg. Pred (where I started) and had been able to get down to 14 mg. This is an autoimmune disease and you will not feel well some, if not many of the days. Best bet is to flow with it, not try to fight it because every day is different. Do what you CAN do, even if it's one thing or one thing at a time. That is success. If you need more Pred that is not a "cop out", but listen to your body. If you're tapering do it ever so slowly even if it's 0.5 mg at a time. That's all I have to add. Best of the best on this journey. Know that you are not alone and this hub is the most concise and best, up-to-date info you will get regarding PMR/GCA....not a GP or Rheumy. They know little, but won't admit it.