Pred Free

[Suffererc]

I have been Pred free since 1 February. I am not sure if I am kidding myself that PMR has gone. I have pains in my upper arms and hips but it is not asked with Paracetamol. Everything else is fine. Slight stiffness in the mornings but barely noticeable so might just be old age. What do you folks think? I dread having to go to GP 😊

[DorsetLady PMRGCAuk volunteer]

I have pains in my upper arms and hips but it is not asked with Paracetamol.

Did you mean to say it’s not helped by paracetamol?

You have nothing on your profile/bio to help us - but looking at posts seems you were diagnosed in 2018.

Could be your PMR still grumbling a bit…but as I’ve said many a time, normal aches and pains of life come to the fore once you’ve stopped Pred.

How did you taper over the last few months? You might find that even a very small dose of Pred [1mg] may resolve the problem..if paracetamol doesn’t.. do you still have some? Might be worth trying as a test.

[Suffererc in reply to DorsetLady]

No Paracetamol does help but I am having to take it regularly everyday. Yes I was diagnosed 2018. I had a spell end of last year when I was Pred free for 6 weeks but it. And back and I could barely walk. I was put back on 5 grudgingly by GP. Don’t think I was believed .

[DorsetLady PMRGCAuk volunteer in reply to Suffererc]

Well if paracetamol is helping then doubt it’s PMR…. So if it’s not then you have to think about other things…. Give it another week and so and then re-evaluate.

If it’s PMR , it’s likely to get worse. If it doesn’t then it might just be age related, not a lot you can do about that!

[Suffererc in reply to Suffererc]

😊 thank you

[Sarnano in reply to DorsetLady]

Hi there. Interesting post/replies. Thank you. I came off Pred in October, after reducing from 30mg to 1 over a couple of years. At first it was OK, but for the last couple of months I have had what seems to be a recurrence. I begin to stiffen in the evening (mostly weakness and pain in the shoulders and upper arms). Any movement during the night is painful, and I am really stiff and weak in the morning, although this passes almost completely within an hour or so. It's definitely not mechanical (I have had the scans). I take 200mg of Ibuprofen before bed, and another 200 mg during the night. It helps but not much. Two recent blood tests show no increased levels of ESR or CRP, so the GP and Rheumatologist are saying it's not PMR. But I have read on here that those markers are not definitive, and you CAN still have it. Any thoughts? Should I try introducing a very small dose of Pred? 1, 2, 5? Also - is paracetamol preferable to Ibuprofen? Thanks so much for any and all advice.

[DorsetLady PMRGCAuk volunteer in reply to Sarnano]

Sorry but both GP and Rheumy are wrong by saying if your ESR/CRP isn't raise it's not PMR.. Up to 20% of patients don't have raised markers...and even if you did first time around doesn't mean you will this time... and they can very often lag well behind symptoms.

The fact that ibuprofen doesn't do a lot is another indication of PMR... and a small dose of Pred might give you the answer. Maybe a week at 5mg then down to 1mg. You may have some ammunition to go back to GP/Rheumy that way.

Both ibuprofen and paracetamol can be harsh on the stomach, and neither will help PMR... I can't take ibuprofen because I'm on BP meds, but you shouldn't take it with Pred anyway.

[Sarnano in reply to DorsetLady]

Thank you so much. I will give that a go. And thanks for the ibuprofen tip too (although they did tell me that, so it's either pred or ibuprofen but not both!)

[DorsetLady PMRGCAuk volunteer in reply to Sarnano]

Spot on!

[PMRpro Ambassador in reply to Sarnano]

It is a very typical timescale for the inflammation resulting from a very low level of disease activity to mount up far enough to cause problems. For the markers to be raised there must be enough inflammation present for long enough to trigger the liver to produce the proteins that the markers represent. That can lag a long way behind symptoms and why good doctors say that symptoms always trump lab results.

Probably if you had remained on 1mg this might not have happened and is why we say it is not a bad idea to take a VERY long time in getting off that last 1mg. Now the inflammation has built up a bit, though probably not too much so maybe the flare protocol would do the job as DL suggests - a week at 5mg and then try 1mg.

Ibuprofen isn't doing anything - so it is unlikely that paracetamol will either. At one time they suggested NSAIDs for "mild PMR" because they have an antiinflammatory effect but now that is discouraged. Mainly I suspect because if it does work, it probably wasn't PMR at all!

[Sarnano in reply to PMRpro]

In fact I took the bold step of asking the GP for (my own!) blood test results, and somewhat unexpectedly they complied straight away. And... the latest one DOES show a raised level of CRP at 12 (normal <5). Those are the results they told me showed no inflammation! Despite a note saying "contact patient". So I have started back on 5mg as suggested. Fingers crossed.

[PMRpro Ambassador in reply to Sarnano]

Good start

[Sarnano in reply to PMRpro]

Hi PMRpro. I am back! Following your (and Dorset Lady's) advice I started back on 5mg daily of Pred. I have been taking that for 10 days now, and the results have been mixed. Mostly it makes a big difference but the pains and weakness have reduced rather than disappearing. And it varies....last night/morning was good, previous night/morning not so. I know you suggested a week at 5mg then reduce to one, but in light of above (and after 10 days now) should I try reducing to 1mg or take it more slowly - maybe 3mg for a week, then 1mg. Or should I carry on for asbit longer at 5mg. Advice much appreciated.

[DorsetLady PMRGCAuk volunteer in reply to Sarnano]

Bit of a problem -

If 5mg hasn’t made a significant difference as yet, you could try another 4 days, but then you may need to taper much more slowly.

You could drop back to 3mg, but if 5mg hasn’t cleared it, then doubt 3mg isn’t going to be successful.

One option is to add another 2,5mg or 5mg for 4 days [so you don’t exceed the 14 in total] keep your fingers crossed it works… then drop back to 3mg. Maybe in 2 steps, first to 9 or 10mg for a week then to 3mg.

Plus of course you have to consider is it all PMR?

[Sarnano in reply to DorsetLady]

Thank you. I shall continue 5mg for a couple more days, then reduce to 3 for a week and see how it goes. Thanks again. You guys are so much more helpful than merely waiting to talk to the consultant on the phone in 6 weeks' time!

[DorsetLady PMRGCAuk volunteer in reply to Sarnano]

6 weeks is not a lot of good when you need an answer today! 😳

[Sarnano in reply to DorsetLady]

Maybe they are hoping it will just go away! Or that I will...

[DorsetLady PMRGCAuk volunteer in reply to Sarnano]

Ah yes, there’s always that… but we don’t! 🤦🏻‍♀️

[Sarnano in reply to DorsetLady]

Quick question... I'm not sure what you mean by "don't exceed the 14 in total". Is that 14mg or 14 days (before reducing). Lats night/this morning was pretty bad, so I have increased to 7.5mg which I intend to reduce after 4 or 5 days if the increase is working. Sound reasonable?

[DorsetLady PMRGCAuk volunteer in reply to Sarnano]

Sorry 14 days... should have clarified, but as it came straight after the 4 days comment ... assuming you would know what I meant,, apologies 🤦‍♀️

[PMRpro Ambassador in reply to Sarnano]

I agree with DL's suggestions - it is a bit of a "suck it and see" situation. The trouble in that you never really know if it was only overshooting the mark or has the disaease activity increased - and then you won't manage to go back to the old dose.

[PMRpro Ambassador]

It is said that the body can take some time to adjust to being without pred altogether - and those adjustment pain are helped by paracetamol.

I;d give it a week and see how it goes. If they stay the same or improve, probably OK. If they get worse, just a tiny bit of PMR still hanging around and you might get away with just going back to 1 or 2mg if you catch it quickly.

[Suffererc in reply to PMRpro]

Thank you 😊

[Lonsdalelass]

For what it's worth, I was pretty much the same once I'd stopped pred (in May 2022) and found taking paracetamol helped, maybe not each and every day, but I was able to take less and less over time (am talking weeks then months here). Like you I feared going back to see the gp, but I think you have to be patient and let your body adjust to getting back to a new normal. Mine did eventually, and now I very rarely need to take paracetamol. Listen to your body and be kind to yourself....its been through a lot with PMR. All the best!

[Suffererc in reply to Lonsdalelass]

Thank you 😊

[DrRon]

I am glad for your freedom Suffererc, and pleased with your attitude about some discomforts to be expected because age may simply be a factor. Dorset Lady has a level head with her comments too. I experience something like you are speaking about. It's been a long arduous journey for me ... you all know what I speak of. over 4 yrs now, once as high as 30 mg Pred; now daily alternating between 2 & 3mg ... RA hand pain has revisited a bit... Tylenol helps, but I am also on 20mg Methotrexate ... so I honestly do not have a good idea about whether I am actually recovering really well from PMR.