Pain after reducing pred from initial 3 weeks at 15mg down to 12.5mg.

[Apridoodle]

I am a previously fit and active 64 year old, recently diagnosed with PMR. After starting on pred, it felt like a near-miraculous reduction in pain and stiffness from the waist down. My shoulders, arms and neck were still somewhat stiff and achy at times, but I no longer had the awful shooting pains that had plagued me before starting treatment. After 3 weeks I was asked to reduce to 12.5mg but one week in, the upper body stiffness and aches have worsened and I am waking at around 4am to a feeling of general achiness over my whole body. That improves as I get going in the morning, but upper arm pain is bothering me 24/7. Is this to be expected or should I ask about reducing more slowly? Do I need to wait and see what happens?

[DorsetLady PMRGCAuk volunteer]

Hi and welcome.

15mg to 12.5mg to 10mg might be recognised taper, but it doesn’t work for everyone..as you have discovered, so suggest you go back to 15mg, get settled again, and then reduce more slowly. Preferably by 1mg a time, or it you have a supply of 2.5mg you could cut in half and get 1.25mg.

Issues at 4am is quite normal and is explained in the link below along with much more- so please have a read through. Quite a lot of info, but all relevant

healthunlocked.com/pmrgcauk...

You do need to return to doctor and explain your return of pain - and discuss what’s suggested for future tapering . If you explain you have gleaned information from the charity [as this forum is] rather than just ‘off the internet’ it might be viewed more favourably.

But you do need to realise you have a serious systemic illness and life does have to be modified to a certain degree to keep it under control… it’s not just a case of take the meds and carry on as normal - much as you would like/want to!

[Lopera in reply to DorsetLady]

Issues at 4am is interesting. I wonder if that is why I usually wake then and often don't get back to sleep.

[DorsetLady PMRGCAuk volunteer in reply to Lopera]

Yep - more info re the issues referred to - ie. Cytokines

IL-6 is the name given to the cytokine, inflammatory substance, that goes wrong in PMR and GCA and causes the inflammation to develop where it shouldn't.

My understanding in as simple speak as possible -

The substances are called cytokines - and part of our normal release of different chemical during our circadian cycle - you can find plenty of info if you search online, some is quite straightforward, some not!

The primary function of cytokines is to regulate inflammation, and as such, play a vital role in regulating the immune response in health and disease. There are pro-inflammatory and anti-inflammatory cytokines.

When your immune systems is not working correctly as in PMR or other diseases then the anti-inflammatory cytokines do not work correctly and allow the pro-inflammatory ones to dominate. When this happens within the blood vessels it restricts blood and oxygen circulating around body particularly in PMR to muscles around major joints and causes pain and fatigue.

Pred is used to dampened down your overactive immune system including the cytokines, and as the normal time for them to be released in the body is around 4am.

If you take your medication a couple of hours before that (or last thing at night) it is in the system ready to act….however it you don’t take it until after that time, your body may already be stiff and painful , until the Pred has worked (1-2hrs roughly).

Some people find their dose lasts longer than 24hrs so it’s not a great problem for them, but others do struggle so adjust their timings to help.

Hope that explains it.

[Lopera in reply to DorsetLady]

Wow, that has given me a lot to think about. I shall do some reading and maybe gradually move my dose to last thing at night. I have read people saying they take it during the night but it would sit in my gullet unless I eat something by which time I would be fully awake.

I can add the holy grail of achieving a decent night's sleep to finding the optimum pillow and mattress!

[DorsetLady PMRGCAuk volunteer in reply to Lopera]

Yes that helps - not always the illness nor the Pred!

[PMRpro Ambassador]

Hi and welcome!

I think you probably needed longer at 15mg - they used to leave you at the starting dose for 4 to 6 weeks. So do ask the doctor to start again.

DId you rush around trying to catch up with all the things you'd got behind with? Being on pred and feeling better isn't a ticket to go back to normal life and catch up - the pred hasn't cured anything, it is a management strategy to keep the inflammation that causes the symptoms under control -- the inflammation is being topped up every day, this is a chronic ongoing illness, there is no short term answer. You need to learn to live with some limitations - but it does improve and get easier as you learn the ropes.

[Apridoodle in reply to PMRpro]

Thank you for all comments - this forum is a wonderful resource and there's a lot to learn. I have greatly reduced my physical activity levels due to fatigue etc but I have a load of emotional stress going on with family members needing support and job issues (only part time desk-based and I'm looking to retire from some of that, which might help) on top of navigating these - for me - uncharted waters. I will contact my GP for a chat.

[PMRpro Ambassador in reply to Apridoodle]

I do appreciate the needs of family members - most of us have been there and we know how that sort of stress impacts on GCA/PMR. I needed a lot more pred during my husband's illness to be able to function. If you can afford to retire then I really would say go for it - dealing with PMR is enough without having to work as well! I worked through PMR without any treatment - but there was no commute and I was self-employed so only me to answer to! Retirement was a great move!