Am I heading for a flare?

[Luciejane]

Hello I''d really like an opinion please. Diagnosed with GCA 2 years ago, had 2 flares when I reached 10mg. I've now been doing the DSNS method and just reached 5mg. I'm taking around 6/7 weeks to drop 1mg. A month ago when I reached 5.5 my CRP was 5 and ESR 20 so the upper scale of normal. I was having a few headaches which happens when tapering and took another test yesterday. CRP 13.5 and ESR 27. I really don't know what to do? Do I take 10 for one day and drop back down to 5 for a couple of weeks then take another test, or just stay on 5 for a couple of weeks as maybe it's the body trying to adjust to the lower 5mg dose . I have a home in Spain and under a neurologist who lets me test here and send him the results. He's always said with every flare I should be considering a steroid sparing drug but I've resisted so far. I've found this forum very helpful with wise advice especially from Dorset Lady! Thank you

[DorsetLady PMRGCAuk volunteer]

If it is a flare , then this link explains how to deal with it - as you can see you need to stay at 10mg for longer-

healthunlocked.com/pmrgcauk...

[Luciejane in reply to DorsetLady]

thank you that's very useful information. I don't know if it's related but Im currently in a flare of microscopic colitis, another lovely autoimmune present! Wondering if this could have caused the CRP and ESR results. I don't feel unwell which I usually do with a GCA flare and paracetamol is currently numbing the headaches. Think perhaps I should consult with Gastroenterologyst.

[DorsetLady PMRGCAuk volunteer in reply to Luciejane]

Could well be microscopic colitis rather than GCA if you don’t have usual symptoms and paracetamol is helping headaches. So probably good idea to go down gastro route.

[Luciejane in reply to DorsetLady]

thank you. Really appreciate your thoughts. Will definitely check the gastro route

[PMRpro Ambassador]

Never mind the "upper level of normal" - what had your ESR been previously? What is the lowest you have achieved? The normal range isn't the range a single individual can have without inflammation present, it is the range of levels found in a huge population, often 10,000 or more of nominally healthy people. We have our own personal normal level - mine is 4 or so, if mine climbed to 20 I'd be in a real flare or got something else wrong.

[Luciejane in reply to PMRpro]

thank you pmrpro. Useful to know too. I understand the way it works but I don't have a base level to go on pre GCA diagnosis. I keep a chart of every blood test taken and the level of pred at the time. My lowest CRP level has been 0.5 and ESR around 5 but it fluctuates within the normal range usually going up a bit as I taper. Hard to know. Just replied to DL that I'm in a colitis flare and wondering if that could have caused the higher bloods. Thank you for your consideration

[PMRpro Ambassador in reply to Luciejane]

Then anything above 5 must be kept an eye on to see if there is a rising trend - you don't need to know a pre-GCA level, you need to know the lowest level you can achieve on pred. If you have a colitis flare that WILL raise the markers too so then you need to consider symptoms as well. A raised CRP/ESR without symptoms needs watchful waiting.

[Luciejane in reply to PMRpro]

thank you. That's very helpful. I'm going to check in with gastro doc.

[PMRpro Ambassador in reply to Luciejane]

Very good idea - let us know how it goes.

[Luciejane in reply to PMRpro]

thank you. Will do.

[Sandmason]

I take Plaquenil and have before, not scary. At 3 months soon so it should help with my taper below 12mg. I'd be happy to add LDN too if it were easier to get. I will not take methotrexate Actemra etc.

[Amkoffee]

I developed adrenal insufficiency after my 3 years on pred for PMR. One of my symptoms of a crisis coming on is a headache.

[ParoaPrimary]

Hello Luciejane.The advice given so far by very respected members is very good, as always.My advice is rather simplistic, but i think in your case with increased ' inflammation markers ' i would feel inclined,as an experiment,to take out as many inflammation causing foods and drinks as possible from your diet, for a period of time,and see if you get a benefit from it. Good luck! We are all in this together !

[Luciejane in reply to ParoaPrimary]

thanks for your reply. I've actually been on an anti inflammatory diet since diagnosis. I rarely have anything with sugar, gluten and cow dairy free, I eat fruit, fish, limited grains, some chicken, salads and vegetables. Sometimes some goat or sheep produce. No processed food. Only 1 coffee a day and I stopped all alcohol for the 1st year. Now I do have some wine but not large amounts. It certainly helped to keep the pred weight off and many others swear it helps but I'm not sure if I felt better as a consequence.