GCA or not?

[Marlenec]

I have had Pmr for nearly 4 years with 3 flares, 4mg Prednisolone is keeping symptoms under control. 3 weeks ago felt really ill, temporal headaches both sides, great fatigue, jaw and tongue pain on right side when chewing. GP got hospital appointment, bloods showed high sed, etc and high white cell count. Rheumy suspected Gca so put on 60gm Prednisolone. Had ultrasound 2 days later showed "thickenings", next day had biopsy. 10 days later, Rhuemy said biopsy negative and can't possibly be Gca if I still have symptoms, as taking 60mg Prednisolone for nearly two weeks would have got rid of all the symptoms and I'd feel great. 2 days later all symptoms much better and lasted another 3 days. Reduced Prednisolone as instructed, now on 20 mg and very fatigued and headache right side quite bad. Had MRI scan as looking for something else. Next app with Rheumy a week on Monday so just asked if can contact earlier as concerned that it is Gca and need more Prednisolone.

I would greatly appreciate your thoughts please.

Thank you.

[DorsetLady PMRGCAuk volunteer]

Hi

Sorry Rheumy not 100% correct- as you were already on Pred it was very likely that biopsy would come back with a false negative result. - but that doesn’t mean you don’t have GCA. Symptoms are always the key - and the reaction of them to the dose of Pred given - and it does sometimes take longer than 2 weeks for all symptoms to go. Yours obviously took 2 weeks and a few days!

Is the headache the side you had biopsy? Or both sides - and that’s just worse?

Until everyone is sure it’s not GCA then I think you do need a contingency plan to go higher if necessary before you see Rheumy again.

Your GP may be the sensible option to discuss with.

Please let us know his things progress

[Marlenec in reply to DorsetLady]

Thank you very much for your response. My headache is worse on right side, that's where the thickenings were but the biopsy was done on left side.

[Blearyeyed in reply to DorsetLady]

Totally agree xx

[PMRpro Ambassador]

I agree with all DL said - the rheumy should have expected lesser signs after being on pred at that dose doe 2 weeks. The clinical findings were trumps - not the negative result.

[Marlenec in reply to PMRpro]

Thank you very much for your reply.

Just had call from Rhuemy, told her what's happening, she can't understand it and said it's confusing as I still had symptoms on 60mg but symptoms better on second day at 40mg. but back when on 30mg and 20. Told me to up Prednisolone to 40mg to see how it goes. Asked me to go for urgent bloods,just got home.

[fmkkm]

Hi there,

Speaking from experience, those sound like classic GCA symptoms to me. Believe me, you don’t “feel great” in just two weeks. Let us know how you get on. fm

[Marlenec in reply to fmkkm]

Thank you for letting me know that. Rheumy has just said to up the pred to 40 so taken another 20. Hopefully that will work.

[Spanky2019]

I haven't expertise about gca but I know what I've experienced. I am a small person but I had to go to 80 mg prednisone to get relief. All symptoms and pain took months to get better. My TAB was negative. ESR and CRP were elevated. Started Actemra 2 weeks ago. On 25 mg prednisone but will be tapering to 20 mg soon. Everyone is different. A great Dr and Primary Dr makes such a huge difference. It's a crazy disease with complicated medicines for sure. Good luck to you in this journey.

[Marlenec in reply to Spanky2019]

Thank you very much for this, it's exactly what I needed to know. The consultant was so astounded my symptoms just as bad and new dizziness and tongue pain.

Hope you don't mind if I show your post to them if any more problems.

Both doctors are lovely and very caring and so keen to get me sorted but I don't think they have full knowledge of PMR/GCA .

Hope you are getting there now and Actemra is working well. Thank you again,very much appreciated.

Take care.

X

[Rugger]

Oh no, Marlene, not you too. I'm sorry to hear this, but hope you get things under control as soon as possible.

Let us know how you get on.

[Marlenec in reply to Rugger]

Thank you, I'm coming to meeting today. See you there.

[Pippah45]

Marlene - I had similar experience to yours and all I can say is listen to the guys on here! Rheumy actually agreed I was doing it right after giving me "the cut it quick advice" which I didn't take! I didn't have the temporal biopsy due to the fact that I had been on pred for months before the appointment came through! They weren't happy with me but such is life!

[Marlenec in reply to Pippah45]

Thank you for this Pippa and yes I have much more faith in our wonderful people on here. I shall follow their advice to the letter. I intend to stay on 40mg until a good improvement.

Hope you're doing better.

Take care.

[Pippah45]

Yes thanks - I am hoping I am Ok on the latest drop to 17.5 and have now printed out the DSNS method and sent it to my sister who is quite a bit lower than me but she had a head start AND she has flares - she was grateful though which is good as I nearly didn't dare send it!

[Grammy80]

These gals know alot more than I...but I do KNOW a negative biopsy does NOT mean you don't have GCA. So, listen to DL and all these others. My friend who has been on pred for 11 years had a double biopsy...both negative...and had GCA. PLEASE take care !

[Marlenec in reply to Grammy80]

Thank you for your reply and yes I have more faith in our "aunties " than all the rhuematologists put together!

[Grammy80 in reply to Marlenec]

💗Keep the faith...here we are all supported!! Take care

[Marlenec in reply to Grammy80]

Thank you for your support.

[Grammy80 in reply to Marlenec]

Just returning a little bit of what I am given.....never alone and always supported!! Be well