GCA flair

[Washbrook]

I joined this ago ages ago and have been so appreciative of reading relevant stuff and the help and information I have gleaned since my diagnosis of PMR in October 2018 when I was put on a self monitoring reducing dose of 30mg. Even so this is my first post and it’s really just a cry for sympathy because, after managing to get down to 2mg, I’ve had a flair and I’m now back up to 40mg. And I’m feeling very disappointed.

I suspected a bit of a flair (achy neck and shoulders) but equally thought it was due to straining my neck to view my Pilates tutor’s interactive u tube session or too much iPad screen time during lockdown. Then it seemed like I may have earache or a tooth abscess & my GP prescribed antibiotics (phone consultation). Some symptoms improved but more appeared especially a weird really painful jaw. Anyway it’s a long story the upshot of which my GP sent me down to A&E where I was so fortunate to eventually be seen by a rheumatologist whose clinical judgement is that I have a GCA flair. (I’m now hoping I didn’t pick up Covid-19 while I spend the best part of the day in A&E.)

I do have a couple of queries - do people find they can get their doses down quicker following a flair? And secondly do many people experience bowel issues while on steroids? I have diverticula disease (like lots of onset people - I’m 74 next week). After 6 months on steroids I got lots of lower gastrointestinal issues and ended up in hospital with a stricture. I didn’t make any connection with steroids and no one else did. However since my dose had got right down to 2mg I’ve noticed my bowels had begun to behav well again. I’ve no idea if there’s a connection with steroids and if there is I have no idea how to manage symptoms. I certainly don’t want to end up with another stricture.

Apologies for the embarrassingly long explantation and introduction to myself. And thanks to the patient ones amongst you for reading.

[SheffieldJane]

I can totally empathise with you as I am in the same position. I was down to 3 mgs after 4 years of patient tapering and then I began to experience GCA symptoms. Personally, I am not expecting my reduction to be any faster, after 20 mgs is reached ( from 40 mgs). I live in hope though, as we must.

I do have bowel issues that have not been particularly linked with steroid treatment by my doctors. I suspect there is a link though. Mostly loose bowel movements, some stomach pain and an intolerance of wheat, spicy foods and hard to digest foods. Preliminary tests have been normal and as Colonoscopies are not being done right now, I elected to stay in the system until the Pandemic subsides. It does concern my GP though. You need to be more cautious because of your medical history, I would have thought. Sending you a hug. 🌷

[Washbrook in reply to SheffieldJane]

Ah thanks for reading and replying & how comforting to know I’m not alone. I shall endeavour to be patient with my tapering and be careful with my diet 🤞. 😊

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry to hear you “have“ GCA flare - and if that’s what it is, you cannot reduce quickly - GCA needs a higher dose than PMR so you need to get those symptoms well under control before you think about tapering.

I appreciate you don’t want to be on high doses of steroids as they cause digestive issues - and you need to get medical advice on how to deal with those successfully - but with GCA you need to take enough medication to protect your sight.

[PMRpro Ambassador]

I think you need to look at this differently: you can't look at this as a flare of PMR, this is not another chapter, this is a new book. You will have to manage the reduction in terms of GCA symptoms - and they need a much higher dose. Had it been a flare of the PMR because of reducing a bit too far then adding 5mg to where you flared would have been enough. The rheumatologist is obviously sure enough this is GCA to put you on a GCA dose.

The GI link with steroids often can be they mask the symptoms of something going on and you need a far lower threshold for seeking advice. But they can cause GI adverse effects as well.

[Washbrook in reply to PMRpro]

Thanks, that’s useful. I had GCA symptoms when it all started first time round but my GP only ever called it PMR and thereafter I just managed myself. My LGI issues - which began within weeks of starting prednisolone and a Ppi - and I was already taking Alendronic Acid for osteoporosis - somewhat took prominence with sigmoidoscopies & scans etc. but the two were never looked at together. The diverticulitis eventually settled tho I need to be cautious as I have a narrowed colon. In view of this potential link between LGI and steroid I shall be extra careful to attempt to manage my diet appropriately. The best thing about this GCA episode is that I am now under a rheumatologist and even better that my sight has not been affected. I shall be patient. Thank you.

[Telian]

Hi Washbrook

You’ve had replies already and do need to have medical advise on how to manage your bowel issues. Don’t know that we’ll ever know if steroids cause them, particularly if you take other drugs, it’s a case of not ignoring symptoms should something else be going on.

I’d like to say you’ve done very well to taper in such a short time since your PMR diagnosis. However it does seem to have been rather quick and could be the reason for the suspected GCA flair. Also it’s likely you reduced too far for what your body needs. Did you have symptoms returning the lower you got?

Consider a slower reduction as you get lower this time and stay on each dose a little longer to allow your body to readjust to each reduction. It might feel frustrating but you’re more likely to steadily reduce and not yo-yo back and forth to higher doses. Same timeline overall with less stress. Listen to your body as symptoms mean a lot.

[Cally55]

I had diverticulitis before GCA, had to have a stricture from a fistula repaired about 4 years before. I have always felt that prednisolone helped, although as Pmrpro says it is probably just masking it. About 18 months ago a rheumatologist added azathioprine to help me reduce the pred and this really improved the gut issues. I am now stuck around 7.5 pred and all the old familiar feelings are returning!

As to getting flare ups of GCA they have happened quite frequently during my 4 years of GCA, sometimes I have had to taper from a high dose slowly sometimes not.

Just at the moment I have a sneaking suspicion that I am having a flare of PMR which although always part of my diagnosis has never seemed to be my illness before. I am hanging on at 7.5 until Monday when my monthly blood test is due, I have a follow-up telephone consultation with the GP afterwards.

It seems with GCA PMR that it is literally one thing after another!

[Washbrook in reply to Cally55]

Thanks for your reply. Sorry to hear you think you have a PMR and hope the bloods and GP consultation go well. I’m interested I’m not the only one with DD issues. After five days care in hospital I was fortunate to avoid surgery and am now always alert to symptoms as I don’t want another stricture. Ever! Interesting what you say about Prednisolone helping/masking - I think you’re probably right. I was given a PPI at the time and am already in Alendronic Acid and AdCal - I have osteoporosis too - not surprising there are upsets. Onwards and upwards.

[KASHMIRI1]

Good afternoon, I haven't found that l have got my steroids down any quicker after a flare l was put back up to 20 twice and was told to reduce by ,2.5 until down to ten. Due to see the rheumatologist in May. I have had intestinal issue for about three months that started after taking Leflunomide. I have had an endoscopy and was told it's ok and l am experiencing drug related issues. Currently having to rush to the loo very quickly in the morning as the other end is playing up now. Again l think it's a drug related issue as l have no weight loss or other problems. I also had the earache/ toothache issue at the end of November and had antibiotics. My flare up was found very shortly afterward. I was also sent to A and E a blood test showed my inflammatory markers had doubled since my last blood test.

[PMRpro Ambassador in reply to KASHMIRI1]

Had you noticed this post is over 2 years old?