Maddy 2

[1100]

Hi all. Have been diagnosed with GCA since January. Doctor at the hospital started me on 40mls Prednisone (from which I have had terrible side effects) I am now from this morning down to 12.5ml, but last night in bed have had bad headache and tenderness on the forehead. Definitely feels like a flare up. Unfortunately I live in a rural area and the last time I spoke to my GP about the side effects she didn’t know what to do! When at the hospital I was told if something did not appear right to ring the GP. Fortunately I have an appointment next Thursday at the hospital to see the rheumatologist.

I’m wondering if the pain continues do I up the Prednisone myself or wait until I see the Doctor next week?Its not worthwhile going to A&E as I could be waiting 12hrs to get seen. Would be grateful for any advise.

[SnazzyD]

Hello and welcome. There’s a lot to unpack here.

If your symptoms are coming back, your dose is insufficient and needs to be corrected. What advice were you given regards dosing. To be on 12.5mg after 8-10 weeks is a bit alarming and I’m not surprised to be honest. For comparison I was on 60mg for a week, 40mg for 6 weeks and on. I wasn’t on 12.5mg until about a year. The Pred is not a cure but it is stopping the inflammation from your autoimmune activity causing trouble like making you go blind, strokes and aneurysms. You need it until that activity reduces and the levelling down on dose is to find your minimum dose that does the job. The first 12-18 months is the most likely time that you will flare and you are trying to avoid going up and down but have a slow steady slide down the dose ladder.

As for side effects, what did you get? Quite often people are really not warned about them and if they do occur people are shocked, then they panic and race down the doses only to flare. Some of them are manageable, some never happen and nearly all are temporary.

GP’s don’t normally manage GCA but they do need to be aware. To be honest even some rheumatologists don’t know what to do about side effects either. We can help if you say what they are.

If you don’t want to go to A&E call 111 but really this early in the treatment, you need proper advice rather than wait for next week. If it were me, I’d go back to the dose I was last good on.

[DorsetLady PMRGCAuk volunteer]

Like  SnazzyD having had GCA, I know your cannot mess about with this illness… and you have reduced very quickly- I can understand why if you had bad effects… but what exactly?

Do you know that last dose you felt okay- GCA wise? If so, then return to that - and please ring NHS 111 for advice.. stating you have GCA .

If you have a Rheumy appointment- do you have a telephone number you can call? Although I don’t hold out much hope in getting a reply before the weekend break.

..and to be honest a 12 hour wait in A&E is better than losing your sight… so if you have any eye issues, you must act upon them…

[Bluey-1]

Where are you? If you are near a major hospital with an eye casualty department you could go there. They’re usually on the ball and you’d be seen quickly if you’re at risk of sight issues. Alternatively have you been given a contact number for rheumatology? It does seem to be a very fast taper. Mine was pretty quick in the early days but not that fast. I empathise as I had some difficult side effects too and I look back and think I was very much on the edge, not with it at all.

[PMRpro Ambassador]

Nothing to add to the advice already given.

However - it actually is your GP's responsibility to FIND OUT what to do, It is pretty simple - raise the dose of pred. And if she REALLY doesn't know, and she should, then there are services at the hospital whereby a GP can ask for advice from the duty doctor in the specialism since that reduces the attendance at the ED.

The side effects of pred or the prospect of a 12 hour wait in the ED are small beer compared with the ultimate adverse effect of GCA which is partial or total loss of vision - which is irreversible. If it is gone - it is gone ...

And please could you edit your post title so that it indicates the reason you are posting.

[Grammy80]

I have GCA, and yes, the high dosage and side effects are rough at the onset. I was shocked how quickly your dose was reduced. Is that the Drs. order? I was diagnosed over four years ago and never got to that low a dose until this year. Please! take this seriously and do as the others have advised and seek care. Please let us know! My best💞

[Viveka]

If you go to the national guidelines which are on the charity's website you will find that your doctor did not follow them. Were they a rheumatologist? After reaching 20mg the usual reduction is 2.5mg a month to 10 mg, provided any symptoms are minor and don't get worse.

I was put on a quick taper (not in the guidelines) from 40 to 20 in a month and that was ok (It definitely wouldn't be for everyone) but after that it was 2.5 a month. I flared around 17.5 and ended up having to stabilise around 20/17.5 for a few months before reducing further.

If you reached 12.5 without any GCA symptoms, that is pretty good, but it has caught up with you and you should do the flare protocol of plus 5 (see link in FAQs) or back to where you were symptom free. As it is easter ring 111. As you have been diagnosed with GCA, which is considered a medical emergency, they should take this seriously. Obvs any eye issues straight to ED.

Keep a symptom diary so you can understand what is going on with your symptoms and pred.

Best wishes.

[Musiclady18]

One thing that stands out is the too quick tapering of the Prednisone! This is mentioned by many of the people on this site. I would call your GP and hopefully she can call your rheumy and get you in to see him/her. If you have the rheumatologist's number I would also call that office as you have been diagnosed with GCA and your sight could be comprised, they have told me timing is very important. Hope this helps!