I've finally bridged the gap

LignumVitae

I posted just over a month ago about how I was always left with a few days 'short' before my Humira injections, I felt as if it had stopped working a short while before I could inject again. Things seem to have settled down and the gap at first shortened and, as of last week, appeared to have gone. I'm ever so pleased about it. I'm now looking forward to the next part of the plan. All being well I will start to reduce other meds. I will start to switch back to plain paracetamol instead of codeine as of tonight. I have stopped using either during the day on most days and the plan is to start by having the paracetamol instead of codeine at bedtime. I can always use codeine if I wake during the night but it would be good to reduce off it if I can. On saturday, the day after the Humira jab, I decided to see what would happen if I didn't take a celebrex in the morning. I discovered that what happened was that I would end up taking that dose mid morning instead and then feeling quite grumpy about being sore, stiff and urgently needing it to kick in. Nothing wrong with trying to run before you can walk but when you are only hobbling it is best to just keep up with the anti-inflammatory and at least this way I know that I need it and it isn't just a habit taking it.

I am about 8 inches short of a hood to have finished all the component panels for one crocheted toddler jacket. I'm ever so proud. I used a thick wool and large hook but even so, I have noticed the difference in my dexterity from the crochetting exercise regime. I just need to find something I enjoy that much for my other joints now, especially the shoulders.

theresak

That's really good to hear, LV, and I'm so pleased for you. It sounds like humira has already begun to have benefits for you - it was like that for me when I started it over seven years ago. I hope it lasts for you, as it has for me - only now after all this time is it not working as well, so I hope you get as good a run as me.

We'll done on the crocheting front!

stickywicket

That's great news, LV, and shows the value of perseverance. If you'd abandoned humira because initially it didn't work for the full month you'd now be back in the horrible limbo of where next? Well done, you! I'm so pleased it's working.

I think your dullers reduction plan is also good. It gives you far more options as / when / if things get bad again. (I included the 'if' there because I like to be optimistic ) As for the celebrex – well worth a try but definitely not worth the result. Not right now, anyway.

You'll be pleased to learn that, when you mentioned meds reduction before, you inspired me to stop taking cocos automatically when going to bed. I'd got into the habit of 'auto-cocos' when my omep had to be increased and I didn't want to end up with more stomach problems because I'd taken the cocos in the middle of the night on a relatively empty stomach. Now my stomach's settled again, I'm back to one omep daily and I have the cocos at my bedside just in case. Reeesult

Owing to the line-break I misread your final paragraph as “ I am about 8 inches short of a hood to have finished all the component panels for one crocheted toddler” On reflection I think this might have certain advantages over the usual kind of toddler and you might wish to have a go next time you feel broody

dreamdaisy

This is how it is meant to be and I am so pleased it has happened for you. Good luck my lovely, may these better times continue and please let us know if they do, OK? DD

PS I think I could cope with a crocheted toddler.

Megrose489

That is good news - long may it continue.

I'm also very impressed with your crochet. I've had a break from crochet/knitting for a while as my hands were so painful. But, now I've had the injections, I'm ready to start again!

Meg

LignumVitae

Thank you all. I am really relishing things being a bit easier. I think, after nearly 16 years of arthritis I am slowly learning the art of pacing too which again helps. Not quite mastered the art of asking for help before I desperately need it but that will come...maybe. I say I have learned the art of pacing as I read about a RA sufferer, she has a blog, who had been snowboarding, including pictures of meds in her snowboarding backpack. She spent the next weekend in a wheelchair. I've had a bit of an ongoing discussion with myself and though I can see the appeal I think I've reached the stage where personally I prefer a slow and steady burn rather than a bit of fun followed by a hefty burn out pay back.

It genuinely is a treat to think back to how dreadful things were in the middle of last summer and how good I feel by comparison now.

As for crochetted toddlers, on Sunday I would merrily have swapped two real ones for one crochetted one because their troubles and tantrums left me a quivering wreak. A bit of Mummy order has been restored, often accompanied with a withering glare at Mr LV who MUST learn not to give in to pester power (because it just breeds tantrums when sometimes the answer has to be no), he's far too much of a push over already.

Ahh, Sticky, I now get to follow your example and get off the auto before bed dose. This forum works well at getting us to inpsire each other. Not sure where I'd be without you all, certainly not where I feel I am right now. You all stuck by me and kept me going and most importantly, you all understand all this arthritis mess, not many other do.

dibdab

Hooray!!!!!! Thanks for sharing your positive news. I'm working on breaking the bedtime automatic dose of cocos.........but not ready to cold turkey it yet, I've got to 1 coco and 1 paracetamol to reduce the codeine element.

As one twin mum to another....the toddler tantrums will pass, most things do, and in my experience mum is always much better at saying "no" than dad, maybe because we get to spend more time in their company and know that standing firm is a necessity to staying in control. Toddler taming is an art, and you're doing a grand job of raising your little ladies and coping with all the rubbish that your disease brings. Before you know it they'll be past the toddler stage, and will look back and thank you for giving them firm boundaries in life that help them feel safe and secure.

Deb xxxx

Slosh

I'm so pleased for you, you really deserve it and well done on the pacing, I have come to the decision it is a bit of an art and a balancing act. Toddler temper tantrums are not goos and especially not when they come in pairs but they do grow out of them, promise!

One of my favourite memories is of my two and a half year old daughter shouting at me mid tantrum "It's my life and I can do what I want", believe it or not I actually replied "Not while you're living in my house".

mig

Way to go LV.Im two and a half years into HUMIRA and life's pretty good at the moment,before starting it I was taking too many codeine and had a long time coming off it reducing the dose slowly but I got there with the encouragement of the ladies on here now if needed I take paracetamol but I always take one codeine up to bed it's always there in morning so I know I don't need it,I surpose I should try not taking one up.
I'm so pleased things are working for you,hugs to all. Mig.

dreamdaisy

Don't be in too much of a rush to change things, OK? When I began humira within a fortnight my ESR and CRP were less than five, and have stayed that low or lower ever since, but I still need the occasional diclo possibly thanks to the OA. As for pain relief, softly softly catchee monkey - little by little, OK? It's all going well, and is much-deserved. DD

mig

DD is so right,it's not a race slowly reduce ,even if you think you don't need it slowly do it. Mig

LignumVitae

Thank you all. I listened to you. I had a bit of a false start caused by two enthusiastic little girls wanting to walk to see the clip clops (horses). It isn't much of a walk but the pressure on back, shoulders and hands/wrists meant my first night of dropped dose resulted in me sitting awake reading and awaiting extra doses of codeine to kick in. Last night I followed the brilliant idea of Dibdabs to have one paracetamol and one codeine and it seems the plan is back on track. It isn't a race, I learned that it will take me a while but I'm going to give it a try. Just dropping half the dose is good if nothing else!

dreamdaisy

The gap may have been bridged but it's not yet a solid construction. Remember that what 'isn't that far' to others may be a tad to distant for us; the getting there is OK, it's the return that adds extra levels of yuk.

I remember my first infusion of infliximab back in 2004: I clattered into the hospital on two crutches and walked out four hours later with them under my arm. Needless to say it didn't last. DD

stickywicket

You're right. It isn't a race but I have every confidence in you that you'll (a)be sensible and (b) won't give in at the first pitfall – or even the second or third.

I, too, reverted to auto-cocos last night but that was due to my fight with the vac. I shall see how the day goes before deciding on tonight's plan.