Confused

[Janann25]

Having been diagnosed with PMR five years ago - and not having had the most straightforward of experiences - I really thought that I’d experienced most of the ups and downs known to man!! However, I’m not sure what’s happening at the moment and just hope one of you will be able to help me.

I’m currently on 4 1/2 mg of Pred and have been on this dose for about 2 weeks. I appeared to be coping very well and had actually thought I would start another 1/2 mg slow reduction next week but for the last three days I’ve felt really rotten. In fact, the symptoms are really the same as when I was first diagnosed - and my CRP level was 127! Seeing as I had a blood test about a month ago and my CRP was 7, I just can’t understand why I seem to have the same symptoms as I started out with 5 years ago, ie, severe pain over shoulders, neck, arms, and feeling as if I’ve got flu. And I’ve done a Covid test and it’s clear.

So, I don’t know whether to double my dose to 9mg or whether I should increase my dose by a lot more. If someone could advise me as to what I should do, I’d really appreciate it.

Jan

[HeronNS]

I assume you can't point to any possible direct cause, such as having been sick or had an accident, however slight it seemed at the time? Although my CRP didn't go as high as yours has it was definitely much higher than any other other tests I'd had since developing PMR (diagnosed 2015) when I had a flare in early 2021. Although I'd hurt my knees the previous year in two separate minor accidents I had been able to continue tapering and actually got to zero. When it became obvious I still needed some pred I ended up back at 2 mg again and seemed fine for several months. I had never had particularly low CRP, never had got into single digits, but suddenly it was at 50 something and I was getting the same very painful neck I'd had prior to diagnosis. I ended up taking 10 mg for a few days. Although I got to 8 fairly quickly I wasn't really able to start a proper taper back down for some time. It was only well into 2022 that I got back to 2. My CRP is now the lowest it has ever been. Something like 6 I think. I don't know if some of my many recent vaccinations have helped. My taper did seem to become easier and more smooth, although still painfully slow, after I received Shingrix vaccination so it is possible it did something helpful to my immune system generally.

So, short answer, yes, I've had this experience, and I was in denial for a while, but now I seem better than I had been for quite a long time, albeit older and "wearing out"!

[DorsetLady PMRGCAuk volunteer]

hi,

this link contains details of how to deal with a flare if that’s what you think it is - and it does sound like it - but would suggest you get another blood test in a couple of weeks anyway -

healthunlocked.com/pmrgcauk...

Has your doctor made any comment on the raised markers?

[Janann25 in reply to DorsetLady]

Thank you for your reply. My last blood test was 5 weeks ago and CRP was 7. The reading of 127 was 5 years ago when I was first diagnosed. I’ve just telephoned surgery and the first date for another blood test is another two weeks - and an appointment to see a doctor is three weeks! I think I’ll treat this as a flare and hope I’m doing the right thing.

[DorsetLady PMRGCAuk volunteer in reply to Janann25]

Sorry misread reading as current one! But if symptoms are similar then yes, most probably a flare….

[PMRpro Ambassador]

It could be flu? But the Covid tests are very unreliable - my daughter tested 3 times after the symptoms appeared and was negative and then go a new batch - which was positive while the old batch still saidnegative.

I think you need medical advice - if only to rule out other possibilities

[Janann25 in reply to PMRpro]

I don’t feel as if I have flu all the time, just later in the day. I’ve made an appointment for a blood test - but not for two weeks. The doctor appointment is in three weeks!! I’ll treat as a flare and hope I’m doing the right thing.

[PMRpro Ambassador in reply to Janann25]

Any self-respecting GP must have an emergency service?

[DorsetLady PMRGCAuk volunteer in reply to Janann25]

If symptoms gone on later in day, may show current dose is not lasting long enough - probably because a tad too low.

[Janann25]

Well, the nearest thing to an emergency service is “first come, first served” at 8am Monday to Friday!!

[MiloCollie in reply to Janann25]

I hate those services. Lots of people I know have to put up with this. Phoning at 8am to be 27th in the queue then there’s no appointments left. It’s a joke. Good luck x

[PMRpro Ambassador in reply to Janann25]

That isn't acceptable - I'd be making a complaint. There should be a few appoinments retained for emergencies and there should be a duty doctor covering emergencies. If they haven't got one - it's time they had.

[Purplegloss]

I felt that I needed to see my GP about my PMR as the only contact I had in three years was a 3 monthly letter to him to arrange my blood tests, and let him know how I was getting on. As the phoning at 8am wouldn't have actually got an appoinment with him who had all the info about me, in my last letter I told him what dates I would be available to see him, and he made an appoinment for me himself. This proved very useful for both of us, and I got to see my own GP for the first time. i guess that wouldn't work for everyone however.

[Janann25 in reply to Purplegloss]

I’m so pleased this worked for you. Unfortunately our surgery is run almost totally by locum doctors so I have no idea who I am actually registered with! I just get to see whoever is available. In fact, on checking with any letters sent about me from the hospital to the surgery, they are either addressed to Dr HM Minor or Treating Doctor. Says it all actually!!

[nuigini]

Those symptoms are typical of a flare for me, but that's me. I, too, had CRP in excess of 100 on diagnosis 8 years ago, as well as ESR. Ever since then, a CRP of 10 or more accompanies a flare.

However, when in doubt, with no access to immediate blood testing and ongoing or worsening symptoms, I err on the side of caution and treat a flare.

I should mention I may have the form of PMR that reoccurs/flares for unknown reasons. At least not any obvious reason to me.

[piglette]

What dose did you drop from two weeks ago. Perhaps it was too much for the PMR, as it takes a while to flare after a reduction?

[Janann25 in reply to piglette]

I’d been on 5mg and reduced to 4 1/2 over the course of a month. I’d left myself on the reduced dose for a couple more weeks and hadn’t started to reduce again. I know from experience that I need to reduce VERY slowly!

[piglette in reply to Janann25]

I am like that too, very, very slowly, I am a delicate little flower!

[Meggsy in reply to piglette]

Another delicate little flower here! 😊

[piglette in reply to Meggsy]

🌻🌼🌸🌺🌹🌷💐🪷

[Janann25]

Yes, I doubled my dose yesterday - I take my enteric coated Pred at night - and will follow the guide lines for reducing again. Like you, I can think of no obvious reason for a flare but, the one thing I’ve learnt from 5 years of PMR is that it doesn’t follow any rules!!