2 day following biologic Entracept promised update

[Hessie5]

My promised update aimed at those of you who asked.

Wednesday 3rd - injection day. Had a slight shoulder ache. This proceeded to get gradually more intense in the early hours of the morning, so sleeping wasn’t great. I kept saying, I am going to do that Clint Paddison programme! I woke up tired and grouchy. Oh and my big toe felt a like numb. A light headache too. I tried to deduce if it was the chips I pinched from my daughter’s plate the night before! Lol 🤭

Thursday 4th - despite the achey sleep, the pain gradually alleviated. Was getting hot type sweats. Very random. My mood got better, by 6pm was feeling somewhat positive. Ms Grouchy now Ms Content.

Friday 5th - Slept like a baby. (Drank a glass of carrot juiced before bed). Woke up forgetting I have RA. Do you have those days? The flares are reminders yep it’s not going.

To summarise at the moment no pain. I get dry eyes, the odd hot sweat. I do need to drink more to be honest. So making the most of my evening. Haven’t signed up to Clint Paddison as yet. Thinking about it though.

Hope this updates proves helpful to at least some of you.

Have a lovely evening, and a pain free, relaxing weekend.

[Em13]

Glad it is going ok for you, Hessie. I'm one injection ahead of you - today being my fourth. The only problem I seem to have is hot flushes for the first few nights (and now days) after an injection. It's a very bizarre feeling to suddenly be warm after months and months of thinking I'd never truly be warm again.

I'm definitely feeling better in myself, but it is still too early to know whether it is going to work as the only joints affected were the knuckles of my right hand (my first ever "flare") and I can feel that they are still up and down from day to day. So far LDN/diet and supplements have kept most symptoms at bay and I've not needed painkillers or oral steroids. I'm looking forward to getting off the Hydroxy and Sulphasalazine though!

Have you watched any of the Cleveland Clinic videos on YouTube? There is evidence that Etanercept would best be given as first line treatment (together with MTX) in early RA. Remission is highly likely then, and sustainable even if drugs are much reduced. (Prof Paul Emery even suggests that if the immune system is treated in this way before it has a chance to go seriously and irreversibly awry, in some patients disease can be switched off completely and more easily controlled in the rest.) I suppose cost is why NHS patients have to suffer first and why this window of opportunity is currently being missed.

[Hessie5 in reply to Em13]

Hi Em - thanks for your invaluable update. Okay, you get the hot flushes too. My duvet is thrown on and off frequently. It’s rather odd agreed. After that major flare on Wednesday, I am eaten carefully, mainly rice, quinoa, pulses, fruit and veg. Lots of my Turmeric tea as well and green. Supplements galore and probiotics always. I buy most of mine from Cytoplan.

I don’t take the Hydroxy anymore as my consultant said to stop. I am

Suppose to take the mtx tomorrow and then wean off. I find them hard to take to be honest so I may be chance it and avoid.

I shall watch those videos. So thank you. I concur re Entracept as my consultant wanted to put me on this from the get go! But I wasn’t deemed in state of need enough so was turned down. Now I have damage, he fought for me to be fair and I am here now. He is adamant Biologics are the way medicines are going in the future.

Wish you well and do keep in touch. Enjoy your weekend. Hessie.

[Hessie5]

Btw excuse my spelling re etanercept

[Em13 in reply to Hessie5]

I was very surprised to be offered a biologic so early as I was only experiencing my first flare since diagnosis 2 yrs ago and hadn't been on Methotrexate. According to the biologics nurse, the rheumatologist expects my RA to be severe, so he is treating me accordingly. Although I was quite moany at my last appointment, the flare was confined to my knuckles, I wasn't on pain killers and I hadn't taken any time off work, so I wasn't really expecting any change in medication. My ESR was high at 24, but CRP was in range - so I'm not sure how come I was deemed eligible when others seem to have to really suffer and experience damage before being offered biologics. But, hey, I'm not going to argue!

I'm surprised you are advised to stop the MTX. I thought it helped to stop the body producing antibodies against the Etanercept? If you watch those videos, in one of them the panel are complaining about some of their patients dropping the MTX without their permission. I just wondered if they made any effort to understand the impact MTX had on those patients' quality of life.

Have a lovely weekend yourself.

[Hessie5 in reply to Em13]

Just for info, my last readings, ESR 16 and CRP 2. However, the worry was the inflammation in my right foot, my consultant was confident I needed l biologics for this to go. I am going to call to ask about the mtx and let you know. In all honesty, I hate taking mtx. They seem to get stuck in my throat and then the stomach burn was frustrating. Again thanks for your feedback, you’ve been very kind and helpful.

[Hessie5]

2nd Injection yesterday. I was hesitant but just got on with it! No time to deliberate. Been feeling tired but coping. Stay positive all. 😊