Turns out no PMR or GCA

[Jlml]

Following on from previous posts I saw my rheumatologist yesterday who had the results of my pet ct scan. It shows no sign of PMR or GCA so she would like me to drop the steroids asap. She has suggested dropping from 40 mg to 20 today for 2 weeks and then 2.5 mg every 2 weeks from then on. Is that doable?

The scan did highlighted my thyroid ( I am already under active on 150 mg of thyroxine per day) and they want to investigate that further together with a nodule on my right lung together with a hernia of my stomach. So I await further investigations.

I am guessing that my first bout of PMR was correctly diagnosed . I came off pred in August before being put Back onto 60 mg just before Xmas following a GCA scare.

My biggest worry is that before I restarted pred I was struggling to walk and function and as soon as I was back on pred movement was so much easier. I am now assuming this was due to the adrenals taking time to recuperate. It was starting to get better with time.

Any thoughts or advice would be greatly received.

[SnazzyD]

Who knows how you’ll feel because everyone is so variable in their response to dropping steroid levels. Personally on high doses even a 5mg drop made me feel rough enough to spend a few days mostly lying down. I know there have been others posting here who have had very rapid plans. I think you just have to see how you feel but perhaps don’t fill your diary too much. Once under 10mg do be careful regards low adrenal function which may or may not swing back into action. I hope your doctor hasn’t forgotten this bit, it seems some do.

What I don’t understand is how the PET scan is deemed to be fully reliable after being on 40mg. I had mine after 3 weeks on 60/40mg and was then told repeatedly it wasn’t useful. Yours did show activity in the thyroid though so fingers crossed. Time will tell on all of it. Good luck!

[Jlml in reply to SnazzyD]

Thank you ladies. I don’t know what I would do without your support.

I am a bit worried about the scan results being accurate as far as PMR and GCA are concerned but I suppose the only way of telling is to try and wait to see what happens.

[Theziggy in reply to Jlml]

Ladies??

[PMRpro Ambassador in reply to Theziggy]

Laddies???

[Theziggy in reply to PMRpro]

Very Scottish PMRro 😀

Acottish

[Bramble2000 in reply to Jlml]

hi, when I had my pet/Ct scan, I had to come off the Pred entirely, although I’d only been on it for the weeks. It did indeed show moderately active PMR but I suspect if I’d stopped the Pred earlier, it would’ve showed severe levels of inflammation. I don’t understand how they can say you don’t have it because the fact that you’ve been taking such a strong dose, it would dampen it down so it wouldn’t show?! It just stands to reason! It’s so flipping frustrating. X

[PMRpro Ambassador]

Were you on pred for the PET-CT?

That speed of reduction may feel a bit uncomfortable at times but since you are reducing to get off pred it should be do-able. down to about 5mg - when adrenal function must wake up again. What will happen to your symptoms is another matter - only time will tell.

[PMRpro Ambassador in reply to PMRpro]

And I have to say - if I read your past posts correctly you were on more than 40mg when you had the PET-CT? If that is so the scan was a total waste of time and money. Even 10mg pred can suppress the signal they are looking for.

[Jlml in reply to PMRpro]

I was on 60 mg for 2 weeks prior to the scan 😩

[PMRpro Ambassador in reply to Jlml]

Then the result of the scan is invalid. Even being on 10mg messes it up.

[DorsetLady PMRGCAuk volunteer]

is it doable?

Unfortunately you won’t know until you try….but as  SnazzyD and PMRpro say once you get to lower doses you may need to ease up a bit.

Good luck

[Jlml in reply to DorsetLady]

Thank you.

[piglette]

From what you say it does sound like you might have PMR. What a waste them doing a PET Scan when you were on a high dose of steroids. PET scans are like hen’s teeth in UK.

[Seablue22]

Due to having to wait for a PET scan, even though it was considered urgent, I had to restart 15mg prednisolone and that affected the results of my scan. Fortunately the consultant considered my symptoms and response to steroids in making the diagnosis.

[AtopicGuy]

I'm also 60 and have a PET CT scan booked for 2 weeks' time. I've been asked to taper off the steroids - as far as I can manage - before the scan to give it the best chance of revealing what is causing the PMR symptoms. I was on 7mg when the appointment letter arrived and immediately increased my tapering to 1mg per week. I'm now on 2mg and will take the last 1mg tablet 36 hours before the scan. The pain, weakness and fatigue is worsening steadily and my eczema has flared up. However, the rheumatologist said there was little point having the scan while on high levels of prednisolone and I'll endure anything to get answers.

[PMRpro Ambassador in reply to AtopicGuy]

At least you have a sensible rheumy!!

[cranberryt in reply to AtopicGuy]

Watch for signs of adrenal deficiency. I don’t know how long you have been on steroids but if it’s been more than a couple weeks it is dangerous to drop so quickly.

[tempusfugi]

Just to add to the discussion, some of my journey is similar to yours. At the end of March 2022, I was diagnosed with PMR and prescribed 25 mg of Pred (the usual 15 mg didn't touch the pain). A month later, when still on that amount, I had a PET-CT scan, the result of which showed 2 nodules on the lung. The registrar also said that there was inflammation showing but 'that must be your thyroid' (like you I am on 150mcg daily of thyroxine for underactive thyroid). He also said you have a 'type of PMR condition'.

3 months later, at end of July 2022, I had a CT scan which showed that the nodules had disappeared. Since then I have been slowly decreasing the Pred and am now taking 9 mg. CRP levels have decreased but still abnormal. I have found trouble getting below 9 mg.

I will be interested to hear how your further investigations go and, of course, am wishing you well.

[Jlml in reply to tempusfugi]

Hi Tempusfugi,

Thank you so much for your reply.and kind wishes.Our cases seem very similar.

I have so far reduced to 20mg buts it’s early days , we will see how it all goes.

It’s comforting knowing that your lung modules disappeared. The rheumatologist seemed most concerned about my thyroid ( but surely this would show up on the ct scan at it doesn’t work properly anyway?) and a large hiatus hernia.

Please let me know how you get on and I will update you on my progress

Sending my best wishes for your recovery x