Achey stiffness but no pain.

[LemonZest11]

Hi Everyone,

I’m 20 weeks off pred and still on 3.5 weekly TCZ injections. I have noticed, after awakening from the relatively pain free world of prednisolone, that I am almost never without some sort of muscle soreness or mild stiffness. I do not have pain, thank heavens, but if you can remember that great feeling (pre PMR/GCA) the day after a physical workout: sore muscles and stiffness that reminded you that you had been physical, without pain, that is how I feel, except it doesn’t disappear in a couple of days. Any ideas about this? Is this the new me? Has my body deteriorated this much over the past few years, masked by pred? Do you think I could be feeling the dripping tap? I better add that, if I take ibuprofen, I feel relief.

[PMRpro Ambassador]

Have you tried paracetamol? I'm working on the left-overs from TCZ and lower pred, This morning the low back pain was a bit yuk - and taking soluble paracetamol with ibuprofen has been brilliant and quick. Paracetamol tablets hasn't been successful alone.

It is difficult to say - but age doesn't help!!!!!

[LemonZest11 in reply to PMRpro]

Yes, I know that old age is a factor. I too have the lower back pain but not really pain, just stiffness and achey. I haven’t tried paracetamol because I wasn’t sure about adding in something else that might affect my liver, not that it’s a problem but if it’s between a couple of glasses of wine and a couple of paracetamol, I’ll take the wine 😂. OK, so soluble 200ml, and one ibuprofen?

[LemonZest11 in reply to PMRpro]

By the way, when you say the leftovers from TCZ and pred, do you mean that you are having breakthrough issues? I hope not, and if para/ibu are working, then hopefully it is along my lines … old age?

[PMRpro Ambassador in reply to LemonZest11]

No, no. Most of it is great but the low back pain may have been better with more pred, TCZ doesn't do it. It is almost certainly osteoarthritis in the lower spine with a bit of sacroilitis and it can mean every steps hurts. It has improved a lot in the last month at last, It was horrendous this time last year.

I'm very unhappy about the painkiller side - Pain Clinic gave me something that was good until it starting giving me headaches and I have always hated painkillers. Paracetamol has never done anything for me on its own. But a tablet of paracetamol with ibuprofen didn't do anything like as much as this soluble version and it was so quick - tablets seemed to take until mid afternoon to work. If 1 paracetamol plus one ibuprofen a day gets it this good, that is fine.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

With you on the lower back - not as bad as yours, but a right b$%%£r at times.

[LemonZest11 in reply to PMRpro]

Yes, good news. Definitely sounds unPMR related if the para/ibu are working. I am so rapt that things are going well for you at this point. Whatever it takes and it seems like you have it sussed at the moment.🤞. Thanks for always responding.

[Linny3 in reply to PMRpro]

I am reading more people are using a nsaid as part of pmr treatment. For 7 years with pmr it has always been stated not to use the nsaids with prednisone. Have minds changed on the use of these while on pred?

[PMRpro Ambassador in reply to Linny3]

Haven't come across it - where do you read it? I use ibuprofen under the guidance of the Pain Clinic and my rheumy but it isn't for the PMR symptoms. It isn't advisable to mix them long term or at higher doses - I aim for the absolute minimum that works/

[Linny3 in reply to PMRpro]

I found this on this site along with other posts

PMRproAmbassador

8 months ago

Naproxen is also an NSAID (Non Steroidal Anti Inflammatory Drug) and they have a reputation for causing stomach irritation. So does pred so taking both together increases the risk and can result in gastric bleeding. So really, no NSAID is really to be recommended. Tylenol/paracetamol is said to be fine.

I take ibuprofen on odd occasions without problems so far but my rheumy insists I take a PPI (antiacid medication) if I need ibuprofen more regularly which I do occasionally.

[PMRpro Ambassador in reply to Linny3]

All NSAIDs in combination with pred increase risks of bleeding. And if the diagnosis is PMR then they are inappropriate, Some doctors use Naproxen long term - it is unlikely to work for PMR and can cause problems if not monitored closely, The trouble is, some people pop painkillers like sweeties and that is always to be discouraged but if they are using NSAIDs there are other concerns. What I wrote there doesn't rule out the use of ibuprofen and explains why and how. There are many situations where it might be used - and it is best to always ask the GP or rheumy rather than self-medicate. I don;t LIKE taking painkillers but the reality is now that I can't manage without.

[Dochaz in reply to PMRpro]

I thought Ibuprofen was a no-no when taking Pred. I've avoided it, preferring Paracetamol, which doesn't always work. In which case I assume the pain is PMR rather than over-exertion. Am I being too prudent? Could an occasional Ibuprofen be an option?

[DorsetLady PMRGCAuk volunteer in reply to Dochaz]

I think it depends on a few things - how high your dose of Pred is, how often you take ibuprofen, are you taking a PPI -and is your doctor happy for you to take it. Plus of course if you don’t have other health issues that may be affected.

Was on a zoom meeting this week -and one lady said her Rheumy was happy -but she is only on 1mg Pred, takes a PPI -and only takes 1 tablet of ibuprofen as and when required (not sure what dose) .

She was told the main issue is when on higher doses of Pred.

As we always say -check with your own doctor who knows your medical history.

[PMRpro Ambassador in reply to Dochaz]

As DL says, it depends on a lot of factors. The occasional tablet with food for a headache is generally fine. But there is always a risk and we must warn against that.

[PMRpro Ambassador in reply to Dochaz]

Forgot to say - I have just tried a dispersible version of paracetamol and the difference is amazing. Tastes vile but it works! i.v. paracetamol is wonderful ...

[Missus835 in reply to PMRpro]

According to everyone medically speaking, they don't want us on ibuprofen because of our age and possible heart issues. I had a shot in the ambulance the other day. One step above IB and one step below morphine, which they gave me later at ER . Quite the day considering nothing was done but 2 enemas which produced nothing. Still take IB plus tylenol though.😉

[DorsetLady PMRGCAuk volunteer]

Could just be body adjusting to life with the Pred - which does have a habit of masking lots of things even at very small doses - and adrenals still not fully functioning, which can take up to 12 months after finishing steroids.

Might be the dripping tap, but would say if ibuprofen helps it's probably not - just life!😏

But do monitor things without assuming everything is PMR/GCA related.

[LemonZest11 in reply to DorsetLady]

Thanks DL. Prior to this whole adventure, I had absolutely no physical pain issues but now, well I just don’t know. Common sense tells me exactly what you and PMRpro have said, just need confirmation from those who know. I have two very large Baker’s cysts and I think they also play havoc. As Bette Davis said, old age ain’t no place for sissies!!

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

Well... my advice on adrenals is based on having been there... it's all too easy to put every little twinge down to GCA, but you do have to remember you are older even if it’s only a couple of years, and your body has not been in tip top condition during that time.... so it needs to build back up...

.. from a non sissy who's adrenals are now in good condition - recovery from 3 joint replacements in 3 years post Pred confirms so..😊

[LemonZest11 in reply to DorsetLady]

You’re a champ, that is why we all love you!! I’ll keep moving forward, taking the odd anti-inflammatory, and now, after PMRpro’s advice, a paracetamol for good measure. Thanks for reassurance, I’m always thinking of the old dripping tap!!

[LemonZest11]

Bloody lower back pain Everyone!!!!

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

Human bodies still haven’t adjusted to walking upright! 😳

[LemonZest11 in reply to DorsetLady]

🤔🥵🤣

[PMRpro Ambassador in reply to LemonZest11]

Yup - poor design!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

In many ways… 🤣😂

[Mayadill in reply to DorsetLady]

I have heard it said a zip would assist the production of new humans.

[PMRpro Ambassador in reply to Mayadill]

I can vouch for that!

[Zareda]

I can relate to what you are saying. I have been off steroids for 2 months and it is not going well. I have pain everywhere again and particularly in my right knee. I thought maybe it was pain that was general arthritis and hidden by the steroids, but it’s that all too familiar PMR pain that isn’t helped by any pain relievers. I hate the idea of that dripping tap and my inflammatory markers have risen to 57 for sed rate and 20 for CRP. I’m just wondering what level you start at again, once you’ve stopped. I’m hoping that a low dose of 3mg or less would work. I hope you find a solution that brings you relief. It’s like a merry go round that you really can’t get off!

[LemonZest11 in reply to Zareda]

Oh no Zareda! That sounds like a flare. I'm not an expert but they are reading this. I'll let them advise you but I reckon sooner rather than later. 🫠

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

You’re up late -do you have permission? 🤣😂

[LemonZest11 in reply to DorsetLady]

Haha, it's only 9.30, we're on the West coast. VERY cold here though.

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

Ahh..apologies.. I’ll wind my neck in!

Miserable here today -fine drizzle - gardens need it but not humans -uck..

[LemonZest11 in reply to DorsetLady]

We're watching the cricket!! Come on Aussie Come on! 👏 🙈

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

Haven’t caught up on today’s play -been busy -so won’t ask/comment !! Needless to say, different view 😊

[LemonZest11 in reply to DorsetLady]

You're our favourite rivals 😉

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

Not sure favourite is quite the right word but I know where you are coming from… 😊

[Zareda in reply to LemonZest11]

Yes, that’s what I’m afraid of. I think ai know it’s a flare but I was trying to talk myself out of it.

[DorsetLady PMRGCAuk volunteer in reply to Zareda]

I think ai know it’s a flare but I was trying to talk myself out of it.

No way Jose! 🤔

[LemonZest11 in reply to Zareda]

Listen to DorsetLady, back on pred immediately. We're all with you.

[DorsetLady PMRGCAuk volunteer in reply to Zareda]

It might be worth giving 3mg a try for a week or so (depends how much the dropping tap has allowed the inflammation build up).

If it works then stay there another week before considering your next step - however if it doesn’t you may need as much as 5mg (hope not). Inflammation markers are quite high.

Come back and let us know please….

[Zareda in reply to DorsetLady]

Thank you so much for your input. I really didn’t know where to start again and since it’s a holiday weekend there is no chance of getting to speak with my rheumatologist. I see him next week anyway. I will give 3mg a go and see how that plays out. I will pop back in and let you know how I manage. Thanks again and be well!

[PMRpro Ambassador in reply to Zareda]

NOW - don't let it get worse or you will need more, Since you got to zero, it may be as little as 1mg or less you need and starting now at 5mg for a week or two would let you get to 2,5mg almost immediately.

[LemonZest11]

Oh bloody hell!! Poor you Potts! We know that TCZ isn't a painkiller, but jeez, it's helped with the taper. I feel as though my body is much weaker, but as DL and PPro have said, it's going to take time to rebuild. We've got/had a disease. We need time to heal. Wishing you the best, thanks for joining in.

[Zareda]

I love hearing from the voices of wisdom! I have faith in the advice you all give me because I know you have all been, done that. The Drs on the other hand, have not been through it. Thanks again……I’m gonna play Dr and put myself back on the low dose 😉

[krillemy]

I hope you find answers.

May I ask why you where put on TCZ, and by whom? My new fantastic rheuma will try to help with other medicines that pred, and he mentioned as a last resort TCZ, but also laughed as it is in a hospital setting and expensive, and not used in my country for PMR

[PMRpro Ambassador in reply to krillemy]

Nothing hospital setting about the injections - same as insulin jabs. It isn't really used anywhere for PMR, it is off-label as it hasn't been approved anywhere for PMR. It works though!

[LemonZest11 in reply to krillemy]

Hello krillemy, my rheumatologist put me on TCZ because I have GCA/LVV. I have the injections, a hospital setting would be for infusions. Last resort? Well I feel fortunate that I was offered the 12 month allocation (in Australia) and it has been a very successful drug for me.

[Darcy2000]

So difficult to say what is PMR and what normal ageing I have been on Actemra for 18 months and Pred for 3 and half years which actually made me feel very well and pain free. Now I am down to 3 mg from 60 mg and aches and pains starting to rear their ugly heads my gut feeling at 75 is that they would be there anyway regardless of PMR and GCA. BTW my original pain was exactly as you said more like the next day of a hard workout

[LemonZest11 in reply to Darcy2000]

Hi Darcy, like you, I am uncertain of what the new muscle soreness is. I agree, when we embarked on the PMR journey we hadn’t a clue about ageing pains. I guess that is what has happened. So glad that you are doing well and long may it continue.

[PMRpro Ambassador in reply to LemonZest11]

Adrenal function adjusting can also cause aches and pains.

[LBM1953]

Howdie. Your issues sound just like mine. I am transitioning from 1mg to 0.5mg using 35 day DSNS. For the last few (many) months I have had general stiffness and discomfort without any major pain, especially if I stay still for too long (I am heading to your neck of the woods in November and not looking forward to the flight(s))! I started golf again in April after 2 years and am now able to get round without too much of a problem and can now play two/three games a week (bought an electric tolley which helps). Some days better than others but I have come to the conclusion that I am not going to be (physically) where I was before PMR and that whilst it can be uncomfortable, I can function. Old age or what....?!!👩‍🦽

[LemonZest11 in reply to LBM1953]

Hello LBM1953, sometimes I feel as though PMR/LVV have left their scars on me in the form of weakened muscles and a general sense of feeling embattled, what I imagine old age to feel like. It's not easy to accept that this process has been taking place over the past few years, masked by what pred can do. Remove the pred and where did our "youthful" strength go? Heading to Australia? My advice is to embrace the flight, make it part of the holiday. Enjoy the movies, have a couple of drinks and then try to get some rest. It will be over before you know it!