It’s been an adventurous couple of weeks hoping for some advice from the usual friends on here.
1. Because of continuously low neutrophils, Rheumatologist referred me to haematologist who told me that I have managed this scenario for over 5 years and to just continue to fight for my own decisions. He thinks I should cease “that fancy drug” Actemra and see if pred alone can control my inflammation. He gave me the form that enables regular blood tests to monitor my neutrophils and inflammation. I already have this, but good to have another because each referral only allows 6 visits. It’s been 5 weeks since last Actemra and bloods show no increase in inflammation . What do you think about stopping Actemra and going with pred alone?
2. Rheumatologist is OK with putting Actemra on hold and going with pred alone (she loves Actemra). Wants me to stay on 5mgs for 6 months before tapering, I’ve been on 5mgs for 6 weeks. She feels reassured that my bones are protected because I’m taking weekly risedronate sodium 35mg … only I’m not. I started it, took four once-a-week doses and stopped after reading about it 👻. Do you think I should restart this medication?
3. I’m not happy about remaining on 5mgs for 6 months and want to taper to 4.5 and then 4 over the next two weeks. Happy then to remain on 4mgs until I see Rheumatologist again in January. I will be able to monitor any creeping increase in inflammation with regular, say 4 weekly, blood tests. Do you think I am wrong to attempt this taper?
Three questions. Over to the experts …
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LemonZest11
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"It’s been an adventurous couple of weeks" - that sounds intriguing compared to your post!!!
Quite amusing a haematologist thinks Actemra is a fancy drug!!! Wonder what he thinks of CAR T? How are the neutrophils?
What put you off risendronate? DId you read about spinal compression fractures at the same time? That's not a trick question - but what makes risendonate worse than fractures (they can be excruciating, just saying).
Why aren't you happy about staying at 5mg for 6 months since you are already well into that? I've been on 7mg for more than that - can't get lower. I'm fine with it but I still need 2 weekly Actemra and can feel it is due at the 2 week mark so doubt that will get any lower.
Well you know that I have full confidence in Actemra, given that I am subsidised by Roche and worked very hard to get that into place after rejections from Australian govt. It’s always played with my neutrophils but now finding it hard to increase them above 0.6. Haematologist wasn’t concerned, but he wanted to test a pred reduction without it.
I started risendonate and, knowing the necrosis thing with the jaw, felt sensitivity high in the gums, above dental work. I’m happy to restart it, just looking for some reassurance.
The 5mgs pred thing is that I think I can get a bit lower. With access to frequent blood tests for the creeping bucket, do you think I am being too cautious ?
The jaw problems with bisphosphonates are greater with infusions (I had an infusion) but mostly when they are used frequently in cancer patients - and there they may be administered 12 to 17 times a year, for us they are given once a year. The incidence with tablets is very low.
Why over cautious? If you taper with a small step down you may well get lower - but I would also say you need a good interval between attempts. And yes, fully see why you want to try for less - I say the same in response to Dasgupta's action of keeping patients at 2-3mg long term to reduce flares. If you can get lower, then why stay at any dose. But you do have to be careful with the taper and not be in denial when it doesn't work.
Yep, thank you, answered my questions. I will think about going back on the risondonate, and do the taper to 4mgs. With the ability to monitor inflammation through the blood tests, given that I’m not on Actemra, I should be able to see the drips, should they begin 🤞. If I make it unscathed, I’ll hold until I see my doc in late January. Geez … it is so good having you. Wish I was in Italy. Ahhh, Verona ❤️
I was at Lake Garda last week - not sure camping this week would be as pleasant since the temperature there is falling slowly but surely! But wonderful sun - our usual Golden Autumn that had been sorely missing, Better late than never ...
1. Most of us in the UK had to come off the "fancy drug" when our one-year ration was up, so most of us are on pred alone (unless we've been offered MTX or Lef). So give it a try and see what the blood results show.
2. My Rheumatologist, an expert in PMR & GCA, advised me to stay on whatever dose (5mg) for however long (5 months). I'm on 'holiday' after 5 years of Risedronate, but she does want me to start again when I've sorted out some dental issues.
3. After the 5 months at 5mg, I've been tapering at 0.5mg every 2 months or so. Just approaching 3mg daily.
Thanks Rugger. Yes, I'm going to recommence the Risedronate and begin a slow taper to 4mgs. Because I am fortunately pain free, I got caught last time and so I will need to be vigilant with blood tests to monitor any increases in LVV. TCZ has been so effective but not enough on its own so prednisolone it is. Sounds like you're doing well, long may it continue.
interesting assumption re your bones, I thought the same, was taking calcium and vit D, regularly doing weight exercises and walking a lot. Refused to take bone protection meds and lost 8% bone in a year making me osteopenia. I hope you will be ok but you just never know
Sorry about your journey. These things are never easy, maybe I hadn’t factored in the effects of Pred enough.
I guess it’s best not to make quick decisions.
What I notice about doctors (meaning no disrespect) is that they are so used to seeing only drugs as the solution to everything, they rarely consider alternatives.
Maybe I need a bone density test, just to be sure. 👍
A Bone Density test would be sensible, if only for a basis to know the situation. Whilst you may think you are consuming enough calcium naturally [and you may be], as you are aware the Pred does leach the calcium from bones - so you do need to ensure you are taking enough… whether that be naturally or in the form of a drug.
Yes good idea to have a bone scan. I had a scan and they said my bones were like a woman in her 40's which was great as I'm in my 60's. So that was another reason I thought all would be well. Had such a shock to be told a year later that I'd lost 8% bone. But I do know everyone is different as others on this site have said they were ok.
It may have been - though you don't know without a dexascan and they don't tell the whole truth - but now pred is in the equation. So yes, you do need a bone density test as a baseline.
Hi Hugh, at the very least, you should request a bone density scan. That way you will at least know. Do all you can but you never know. On the other hand, your doctor is making assumptions and without that scan, he/she shouldn’t. Keep on with the taper. I may seem to be on a low dose but my journey, like so many others on here, has been long. Slow and small reductions are key. All the very best.
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