following on from my last post …….Turns out no PMR or GCA

[Jlml]

I have now managed to taper down from 60mg to 10 ( in about 3 months). I have been fine until I hit 12 and a half and following the normal couple of days of withdrawal I had a few days of aching and not feeling to good. Now I am on 10mg I feel awful…really bad brain fog, utter exhaustion and body aching. I am struggling to do anything.

The reason I have been told to taper down 2and a half mg every 2 weeks is before Xmas It was thought that I may have GCA. I was put on 60 mg and had to wait for my pet ct scan. I kept on 60 mg for 2 and a half weeks until my scan came through and the results showed no PMR or GCA . This is why my rheumatologist has asked me to come off steroids.

Are these symptoms just because I am coming off quickly or is it more likely that I do have PMR , but being on such high steroids before the scan it wouldn’t show up and I am actually having a flare up.

My ESR level dropped to 7 whilst on 60mg but at my last test( when I was on 15mg) had risen to 27

Any advice or thoughts would be greatly appreciated as always.

[PMRpro Ambassador]

"I was put on 60 mg and had to wait for my pet ct scan. I kept on 60 mg for 2 and a half weeks until my scan came through and the results showed no PMR or GCA ."

Of COURSE the scan showed no sign of PMR or GCA - even as little as 10mg of pred can interfere with the results and 60mg pred would very effectively suppress the inflammation so there would be no uptake of the radioactive glucose and it would give a false negative.

The fact that the ESR is rising now you are at lower doses of pred shows there IS some inflammation somewhere - whether that is due to PMR or not is another matter. Your symptoms suggest it could well be.

Did the radiologist not ask if you were on pred? Given the cost of the darn things and the waiting lists they would usually refuse to carry it out on a patient on such a high dose of pred.

I really don't know what you can do though - your rheumatologist appears to be one of a group of poorly informed specialists in the field.

[Jlml in reply to PMRpro]

Thank you PMRpro.

I don’t really know where to go from here.

I keep hoping that the symptoms will diminish and it’s just withdrawal and reducing so quickly but I don’t want to carry on regardless if it’s going to get worse. 😩

[PMRpro Ambassador in reply to Jlml]

As DL says, hmmmm ...

Have you a decent relationship with your GP? (WHO they chorused ...) Where do you live?

[Jlml in reply to PMRpro]

I am in the U K, south England.

[PMRpro Ambassador in reply to Jlml]

Is a private session an option? The right one could provide your GP with the right guidance. I have grave doubts about your rheumy.

[Sharitone in reply to PMRpro]

Just curious - I had been on upwards of 15mg pred for a year, and then 60mg for 3 weeks when I had my PET/CT scan and it did show vasculitis in at least the subclavian and axillary artery. Why would that be? The company who did the scan asked whether I was on steroids and didn't blink when I told them.

[PMRpro Ambassador in reply to Sharitone]

Must have been seriously severe inflammation that hadn't been entirely cleared out - not sure what the PET-CT can show structurally but the inflammation does leave traces behind.

[Sharitone in reply to PMRpro]

Thank you. It's much easier to live with what one can understand. Is it possible that that is why I have still got the fatigue 2 years later, even though TCZ has worked for me?

[PMRpro Ambassador in reply to Sharitone]

TCZ doesn't stop the underlying autoimmune disease process, just the effect of the IL-6 being produced - it works on the receptors that implement the effect. And there are 2 other mechanisms that MAY be involved, that;s why half of patients continue to need some pred.

[DorsetLady PMRGCAuk volunteer]

Ditto to PMRpro’s comments…

.. and although we do know that ESR rises for all sorts of reasons -I think we probably can hazard a good guess why yours is high. Is anyone taking any notice of that?

[Jlml in reply to DorsetLady]

The rheumatologist did say she would ring me in March ( nothing as yet) to see how I am getting on. X

[DorsetLady PMRGCAuk volunteer in reply to Jlml]

Hmmm….

[TheMoaningViolet]

I have to join the others in the outrage at the scheduling of a PET CT for someone on 60 mg of Prednisolone. My ESR was 2 when I tapered from 15 mg to 12.5 mg, so yours sounds high to me.

Perhaps you could ask for a second opinion, and soon.

[Handloomweaver]

hi Jim

I too had symptoms of CGA - woke up in the night with tenderness in my temples which over a week turned into a kind of pressure headache, then my jaws started to tighten as I ate breakfast. No eye troubles though, thank goodness. My GP diagnosed CGA right away and put me on 60mg which stopped the symptoms. Then then had all the tests - bloods, scan and biopsy. All came back negative for CGA but I’d been told by the consultant and surgeon that didn’t mean that I didn’t have it. I’m currently on a plan to taper from 30mg but am finding that each time I drop 5mg my symptoms return quickly so it’s a bit one step down , one step back at the moment. I too feel tired and a bit ‘not fully present’ but that’s the steroids.

I’d speak to the consultant about it if I were you.

[agingfeminist]

So sorry you are suffering so much. The wonderfully informed people on here say that the evidence is that one shouldn't drop more than 10% of a dose in one go. If the symptoms return you know you have overshot the threshold dose you need. I found the DSL taper magic at lower doses. all good wishes