I’ve started 2020 well by joining the group.
Much to my surprise I was diagnosed with PMR and GCA in May 2019. My GP prescribed 50 mg Prednisolone and referred me to a rheumatologist. I had tapered to 8 mg when the symptoms reappeared.
The rheumatologist has suggested I may be eligible for Actemra. I will see him on 14 January.
I would be grateful for help with questions that I should ask him.
To the people who started and run the group, thank you.
Hello, not a person who runs the group as you put it, but I’ll kick off. To have got to 8mg from 50mg in what seems like well under a year is very fast for a GCA and I’m not surprised you flared. Do you know where their schedule came from? That might be worth asking. Even the suggested ones can be too fast for some if their disease activity doesn’t slow at the same rate as Pred reduction which is only quelling the inflammation. It would be a shame to be put on to an expensive powerful immunosuppressant for the sake of a more realistic plan. Have you read DorsetLady’s piece for all newcomers? I would read that when she comes along, read this as just one example of a taper plan (still too fast for some) and you might find some questions come to light.
rcpe.ac.uk/sites/default/fi...
Many docs are so afraid of Pred yet don’t know how to advise patients to help the side effects. Did you have a bone scan done to check your bone health pre Pred?
Anyway, those you are waiting for will be getting up soon.
Hi Snazzy,
Thank you. I have been baffled by the rush to decrease Pred so fast.
Yes I have had a bone scan, results was borderline osteoporosis but no recommendations about extra calcium.
Thank you for the link to DorsetLadys piece for newcomers.
I am feeling happy to have found such an understanding group.
Best wishes for 2020
Did you have a vitamin D check as without good vitamin D levels, calcium is pointless. It does appear with frustrating regularity that the fear of Pred causes docs to rush off it, only for a flare to occur and the dose be put up again and the process to restart. The cumulative dose can end up more than if a slow plan had been given. I had so much pressure to speed up and horror stories about being a bloated, diabetic with no bones left. Yet, given these threats, I was given no advice on how to avoid it which where this site came in. I adopted a sweet but stubborn approach saying that I wanted to avoid the scenario above and had to balance a heavy domestic situation with withdrawal symptoms. I also asked them to note that I was sitting there with good blood sugar levels and no excess weight, albeit with a moon face and panda eyes.
If you got from 50mg in May to 10mg by now I really would question the purpose of Actemra. That dose is a physiological dose - about what the body produces as cortisol naturally - and isn;t causing much in the way of problems. Actemra is a a biologic and even disregarding the price it comes with its own potential adverse effects.
Could you add a bit of info to your profile page - it is such a help knowing where you are and how long on/doses of pred and so on.
Please , can you explain what a biologic is? My doctor wants to put me on Actemra as well.
These links
medicinenet.com/biologics_b...
arthritis.org/living-with-a...
arthritis.org/living-with-a...
provide a lot of info about them. They can be wonder-drugs when ordinary chemical medications don't or no longer work. But they are not innocents and do bear with them an increased risk of infection because they have a major effect on the immune system.
They are VERY specific and there is no way of knowing if they will work 100% for your disease - even GCA has at least 3 potential underlying causes of the inflammation. If the IL-6 pathway is the one that is involved then Actemra is your drug - but it may not be the only one.
Thank you. I’ll read the articles today. Much appreciated. How do they know which pathway is involved can they test before?
Not really - and that is one of the problems with biologics as is mentioned in one of the articles. They know from research that certain pathways are involved but the techniques aren't available as routine testing.
Ok. Makes sense otherwise a lot more people would probably be on it if they could pinpoint it. My doctor also wants me to stay on the methotrexate and I think both of them would be tough on the immune system anyway I will check it out thanks to you✔️
I know using both seems to be done - using Actemra should be done along with pred anyway so why they want to add the mtx seems weird to me.
Like the others would say you’ve reduced too quickly. GCA is still very active for first 6 months so you need to make sure you have enough Pred during that time.
I was never offered Actemra - wasn’t licenced in UK when I had GCA so can’t offer advice - but sure when those in North America come on line you will get advice. They’ve been using longer over there.
Thank you all.
I will prepare questions for the rheumatologist, over the weekend and written down of course.
I wasn’t aware of the cost also so another factor to consider.
Hi,
It’s Saturday morning here, I’m up, dressed and fed , but as I’m in Australia out of step with the majority of members. So please excuse me if the replies are slow.
Now some answers to your questions.
It would be about ten years since a Vit D check so that’s not useful information now.
I will add more information to my profile over the day.
Thanks
For PMRPRO and the others who have commented on my attempted speed of tapering
From diagnosis in May, 2019,
50mg prednisolone for 4 weeks.
Then rheumatologist’s plan was...
Prednisolone
37.5mg for 2 weeks,
25mg for 2 weeks,
20 mg for 2 weeks,
15 mg for 2 Weeks,
10mg for 2weeks,
Then 9, 8, 7, 6,......
Decreasing by 1 mg per month
I’m not surprised that I am relapsing now.
Waiting see rheumatologist next week.
Peace to you all.
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