is this PMR/or flare up/or something else?

[Jakey67]

hi I have a call out to my GP and any advice ahead of me speaking to him would be much appreciated.

Diagnosed with PMR in May currently on 10mg of prednisolone overdue to taper to 9. Initially after taking steroids greatly improved, but since August I feel I am going backwards. Currently I have pain in left hand ( GP suggests carpal tunnel) pain in knees significantly in right, pain right side of neck going into head. Generalized stiffness and fatigue. I am definitely less mobile than I was a month ago. Went on holiday last week which caused me to do different things. I discovered it was too much and that I am only able to hobble up and down steep hills, cannot flex right knee forward properly, struggled to drive a manual car. Sitting on the plane for 4 hours was pain free, getting off down steps was not ground staff asked if I needed a wheelchair.

I went to physiotherapist thinking right knee was stemming from old injury. Physio thought osteoarthritis, gave me exercises which have made it worst.

I am waiting to speak to GP but such a lot going on don’t know what to say/and whether to taper down. If it is PMR flare would a blood test reveal and should I ask for that? Any ideas would be so helpful really not happy/depressed seem to be deteriorating. Thanks .

[PMRpro Ambassador]

You are never relentlessly reducing towards zero. You are undertaking a process called titration to identify the optimal dose for YOU, The lowest effective dose that manages the symptoms as well as the starting dose did. You do it by slowly reducing the dose in SMALL steps at 3 or 4 week intervals.If any symptoms reappear you know you have overshot your objective and you go back to the previous dose. Then you wait a month or two before trying again and once that has happened it is probably a good thing to reduce the dose only by 1/2mg instead of 1mg.

Whatever dose you were on in August where you felt good is where you should be, not at 10mg and looking to go to 9mg. We use a flare protocol when people overshoot - add 5mg to the dose where the flare occurred for up to 2 weeks, Then drop back to where you were last good.

Details of how you have been tapering to date would help us advise better maybe. But you need more than you are on at present.

[Jakey67 in reply to PMRpro]

My apologies I didn’t make it clear. I tapered from 15 to 10 which I have been on for weeks, (which is why I was scheduled to go to 9mg) and was on 10mg when I was feeling better/more mobile.

[PMRpro Ambassador in reply to Jakey67]

Yes - but HOW did you get from 15 to 10mg? It all is important.

[Jakey67 in reply to PMRpro]

Thank you for response. I have checked my GP notes. Unfortunately I cannot tell what dose I started on, ( higher) only that I reduced from 20 to 15 on 15th May to 4th June, then 12.5 from 5th June to 26 th June, then down to 10 mg for 6 weeks to 7th August when due to reduce to 9mg. I didn’t taper down to 9 was not feeling great and due to go on holiday GP agreed wait to return. Been back a week, no improvement, not good, very variable condition pain and much fatigue. Initially I was OK on 10. I think you are telling me it is a flare, I am sticking head in sand hoping and also afraid to take into my own hands and increase back up to 12. Sorry to trouble further but any help would be appreciated.

[DorsetLady PMRGCAuk volunteer in reply to Jakey67]

My reply below gives link to flare protocol….

[PMRpro Ambassador in reply to Jakey67]

I was concerned that you had gone directly from 15 to10 mg in one fell swoop - that means if things go wrong it is difficult to know it is is more than 10mg or more than 12.5mg you need.

Our advice would be use the flare protocol which DL gave you - go to 14mg for a week or so to clear out the accumulated inflammation and then drop back to 10mg and see if you are still OK at 10mg. This isn't a permanent increase, it is a springclean before going back to dusting. If you are not on enough to manage the daily dollop of inflammation, it will build up and you will get worse, not better. You WILL get lower - just not yet.

[Jakey67 in reply to PMRpro]

Thanks, should I take the increase in the morning when I take my meds or split the dose taking extra with food pm or does it not matter?

[PMRpro Ambassador in reply to Jakey67]

Just take it all at the same time if that is what worked when you started at 15mg.

[AtopicGuy in reply to Jakey67]

You should carry an up-to-date Blue Card showing your dose history. Pharmacists usually issue these once you've been on oral steroids for a few weeks. Keeping the Blue Card updated ensures you are treated appropriately during any emergency.

[Jakey67 in reply to AtopicGuy]

Thanks I didn’t know that and don’t have one!

[DorsetLady PMRGCAuk volunteer in reply to Jakey67]

Re comments from AtopicGuy -

See this- obtains info on steroids cards if you scroll down through post - there are two - the blue one is useful for keeping a record of your dose, but he newer one should be also be carried - Steroid Emergency Card (White with coloured edging).

healthunlocked.com/pmrgcauk...

[AtopicGuy in reply to DorsetLady]

I was last prescribed oral steroids in 2022, and always carried a blue STC, but I've never seen a SEC.

An image of the blue Steroid Treatment Card on both sides. The patient should fill it in.

[AtopicGuy in reply to AtopicGuy]

Here's an image of the 'new' SEC.

An image of the red-boardered Steroid Emergency Card. The patient should also carry a STC.

[DorsetLady PMRGCAuk volunteer in reply to AtopicGuy]

It’s been in use for at a few years -as explained in my post (which was written 3 years ago) and can be found in the FAQs. There are pictures in that post as well as on the charity’s web page.

[DorsetLady PMRGCAuk volunteer]

In your first post you asked about a flare - and I did give you the link to the flare protocol.. and both PMRpro and I said we thought you had reduced from15mg to 10mg too quickly. Did you sort yourself out then?

Sounds as if that reduction is still having a knock on effect, and being on holiday, great as it may be, you are out of your normal routine and can prove to be a setback sometimes… and we always suggest requesting assistance at airports.

If the exercises for knee have made things worse, then one wonders if it PMR flaring rather than or as well as osteoarthritis.

I’d preempt the call to the GP and treat as a flare, blood tests may or may not show anything as yet, they often lag behind symptoms.

A reminder of flare protocol - and once you get things under control, back to 10mg - and no tapering for at least a month… and then 1mg every 4-8 weeks [that’s from the guidelines] - whether you drop 1mg every 2 months, or 0.5mg every month is your choice. Some require even slower. But you do need to listen to you body and get back on an even keel.

healthunlocked.com/pmrgcauk...

[Jakey67 in reply to DorsetLady]

Thank you. For some reason I got the wrong end of the stick and I thought a flare only occurred with low dosage .

[PMRpro Ambassador in reply to Jakey67]

Can happen at any dosage if that dose is now too low for the disease activity. And in the early stages it is more likely because you are usually diagnosed when the disease is at its most active. It quietens down over time but at different rates in different people.

[DorsetLady PMRGCAuk volunteer in reply to Jakey67]

No…anytime if you go too low for what your PMR requires at that particular time in it’s lifespan.

[Bcol]

I think if you dropped from 15mg to 10mg in one go you have probably found your problem/answer. Once you have followed the flare protocol it may be worth thinking about one of DL's tapering programs. I worked on 0.5mg every 5 weeks but even then only started the next taper if everything was OK.