Advice please (stage 2): Hi all, I posted a few... - PMRGCAuk

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Advice please (stage 2)

Urtica
Urtica

Hi all, I posted a few days ago regarding pains in the top of my head and sore scalp. This was not responding to a variety of pain killers and got worse on Sunday so I phoned the GP out of hours service who recommended that I go to A&E, which I did.

I was given a thorough check up and bloods were takes for an ESR test? These all came back normal. I was given paracetamol and ibruprofen and told to up my pred to 40mg for 3 days to protect my sight before going to see my GP on Wednesday. If I could not get an appointment I have to go back to A&E. I have to phone the surgery on Wed to get appointment so hopefully I will be successful.

I would be interested to hear the experience of others. I have no temporal tenderness, no problem with eyes or jaw at the moment and since taking the 40mg my headache has gone. I have stopped pain killers as they were not working anyway. Last ones taken this morning and pain has not returned.

So even thought bloods were OK, pain has gone after 2 x 40mg dose, do you think the GP will say it is GCA? If so, what is the average time people have to stay at 40mg, and how quickly can you reduce if all goes well!

I was about to drop from 2mg to 1mg and hoped to be off the pred by early next year (diagnosed Dec 2016 with PMR ). I realize this was probably optimistic but thought I might be one of the lucky ones although abviously my sight is far more important than getting off the pred.

Any information or advice would be gratefully received.

12 Replies
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PMRpro
PMRproAmbassador

Caught quickly 40mg would be plenty to deal with GCA - the reason higher doses are used it to reduce the swelling very quickly and hopefully avoid visual loss. It is very suspicious when ordinary painkillers don't work but pred does. I'll leave the others who have had GCA to speak about their experiences with reduction.

Hi Urtica, if it is GCA you are likely on the Pred wheel for at least another 2 years if not longer. I’ve definitely learned from this site that GCA presents very differently for each person. I had hoarseness, slight sinus pressure, low grade fevers and kick butt fatigue, but no headache or scalp/jaw issues. I had already had PMR for 6 years. My inflammatory markers went off the charts with the GCA. 40 mg for 4 weeks mopped it up, then started tapering. Got to 20mg and couldn’t budge, so ended up on Actemra. It’s made all the difference. Currently at 1mg Pred. GCA May 2017. Hope you figure it out!

Urtica
Urtica in reply to PMR2011

Hi, thanks for your quick response. It really is a strange illness isn't it? What I don't understand is, if it is GCA then why does it not show on my blood tests, although I must say it never showed when PMR was diagnosed.

It is a relief to feel pain free today so will have to wait until Wednesday to see what doc says. We have only just moved so have no idea if the practice is clued up about PMR/GCA. Fingers crossed.

PMRpro
PMRproAmbassador in reply to Urtica

Because up to 20% of patients with PMR and GCA never have raised inflammatory markers. And some patients don't "mount the acute response" while they are still taking pred - and between the two factors, that covers quite a lot of people. You obviously are amongst the first group...

Urtica
Urtica in reply to PMRpro

Thanks for explanation. It does seem to me now that I probably have GCA. As I mentioned before, it has been a very stressful year so I assume it has finally caught up with me.

PMRpro
PMRproAmbassador in reply to Urtica

Maybe - I do hope not. But better safe than sorry!

Jackoh
Jackoh in reply to Urtica

My GCA and PMR have never shown up in blood tests Urtica. My Consultant Rheumy and I have to just go on symptoms.Symptoms rule!!

From memory I think I was on 40 mg for 6 to 8 weeks, & after another 8 weeks had got down to 20.

If you've responded well to 40mg it is likely GCA and possibly because you've reduced too quickly for the PMR. The inflammation hasn't been kept under control properly and has morphed into GCA. That's another sign, painkillers don't touch GCA headache. Do you have a Rheumie? If not ask for a referral to get the correct diagnosis then your GP can manage you day to day. The reductions are different for everyone depending how they respond. You need to stay on your current dose until all symptoms have subsided then perhaps a 10mg reduction, you'll get symptoms return immediately, they're withdrawals and will go after a few days, paracetamol can help deaden the pain to get you through. If symptoms come on for no reason and continue to worsen it's a flare and you should go back to the dose you were symptom free on and stay there until all have gone before trying a lower reduction say 5mg. You should be able to get down once you know what your body can comfortably tolerate. Your eyesight will be okay as long as you're on the correct dose for the inflammation. Just don't rush it - you'll get to know your body and what suits you. ATB.

Hello Urtica

GCA Nov 2016. Two years, w a variety of ups n downs, and I'm at present alternating 8 - 8.5 mg and managing ok, but dreading going down to the lower doses again. Proceeding v slowly and w caution.

I was so 'out of it' at the start that I can't remember how long I was on 40mg for. I had most of the classic symptoms, and my ESR was 86. Luckily was diagnosed pretty fast - no thanks to the Kafkaesque NHS GP system. Pred removed all pain within hours. Joy! But then the side effects kicked in . . . . . I just did what I was told, and was too knackered to cope with anything else.

It took me a while to 'come to the surface', find this forum, and start writing things down, since when I have a rough record, and a better idea of what to expect. There does seem to be quite a range of individual variation in what people experience.

At first I was v keen to reduce pred asap, mainly because of side effects including diabetes, and I was worried about the risk of osteoporosis. But I've since had 2 dexa scans, one fairly recently, which were ok. I take vitamin D3 and eat minimum carbs, w calcium content in mind. My eyes are fine - well, fine-ish. They water a lot and I do need rather strong glasses, but was told yesterday they are 'healthier than average for my age'. 'Beautiful!' he said, peering through a machine that was scanning their innards. V reassuring, esp w the diabetes.

I learned - and now would reduce pred as slowly as possible under most circumstances. I rest a lot, try to avoid stress, and try never to overdo things. Mine is the untidiest house you ever saw! Have had severe muscle weakness , now much improved, and some problems w balance, and w tendons which have made me v cautious. Also a dodgy hip. But I've recently resumed walking a bit, and hope to build on this as much as winter allows.

Some people do manage a quick pred reduction, but not me I find. I like the analogy of the tortoise and the hare, and aim to be a happy tortoise.

All the best.

Hello again Urtica

I see that you have several knowledgeable people "On your case". - That's good.

Have you come across the "Temporal artery biopsy test"? This can be very useful in determining whether you have GCA. It occasionally throws up false negatives - but if it is positive (as it was in my case) - then you definitely do have GCA. You would need to move fast if you want this test, since it becomes useless if you have been on high dose preds for a while. I don't know the exact timescale limitations. maybe others do.

In your last set of notes you seemed to have found Medics who took you seriously. That's good - but watch them like a hawk Urtica. You only have two eyes - or one, in my case. It's not a time for politeness.

Someone asked whether you had a rheumatologist on your case - You do need one.

All the best

Arthur

Urtica
Urtica in reply to arthur463

Thank you to all of you for your advice and telling me your experiences. I will report back when I have seen the GP tomorrow.

Thanks again.

Urtica

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