Farewell imraldi.

dreamdaisy

I saw my rheumatologist today due to my being in dire straits with the nonsense she deals with. It is inconclusive that the imraldi is to blame but she is taking no chances and immediately said that she would do her best to get me back on the old combo of humira and meth. She was very impressed by my mobility and general muscle tone. I told her she should be as it was hard work getting there and maintaining it: oh how we laughed.

I have a bunch of blood forms to keep me going and two which need immediate attention, to measure iron, vit D, thyroid and other stuff. We discussed having some kind of fancy bone scan but finally concluded that my fibro is running riot. She suggested amytryptaline to help with that, I suggested holding fire until other things are resolved.

It was lovely seeing her again, she was rueful that it had been so long but, as she had spent the entire morning seeing brand-new-to-rheumatology patients it was no wonder my appointment was delayed by 80 minutes. DD

stellabean

That's is good news in a way DD not that your fibro is running riot, at least going back on your old combo you can see if the change in your condition is due to the change in your meds or just the march of time and general decline. Lets hope it will not be long before your old faithful combo is back and your bloods may show nothing serious or come up with some answers that are easily sorted.
I am glad the doc was pleased with the results of your exercise program she should be it takes a lot of effort to keep up when you are not feeling on top form yourself.

stickywicket

That sounds like a satisfying appointment. No magic wands still, alas, but doc and patient working together to aim for the best outcome.

I expect the various blood forms will require 'a whole armful' but we're used to that. I don't know what I hope them to reveal / not reveal but i hope it's good 8)

No wonder appointments for us old hands are put back so much. So many newbies: so few rheumatologists.

I did amitryp briefly when my THR went beserk. Just at night along with the oxycodone. I've no idea if it worked. One of them did but I was pleased to get off them again.

dreamdaisy

Thank you, Stella and sticky, I appreciate your taking the time to reply. Last night I briefly achieved the dizzying heights of moderately grotty but have sunk this morning back into the morass which is an unhappy auto-immune arthritis. Bleurgh. DD

dreamdaisy

Still bleurgh. Couldn't do the quick crossword or an entry level six box sudoku. Most irksome having a marshmallow brain. DD

stickywicket

It's the concentration. It's amazing how pain just chops it up.

How about a dot-to-dot

I wish you a better day tomorrow.

dibdab

Sorry to hear the fibro is running riot, but glad that you seem to have made at least a little progress with the rheumy. Here's hoping the grot settles soon. I've had to ditch the crosswords and puzzles whilst all the pain meds do their stuff for my back, but on the plus side I'm two thirds of the way through a beautifully colourful crochet blanket, enjoying playing with colours to make hexagons that I'll tesselate into a blanket which will make a lovely gift for someone at the end.

Hope the meds do their stuff soon.

Deb x

daffy2

dreamdaisy wrote:

Still bleurgh. Couldn't do the quick crossword or an entry level six box sudoku. Most irksome having a marshmallow brain. DD

That's because you know there is a better version in there somewhere that's currently offline. Following events in the news recently suggests there are more than a few people out there who also have marshmallow brains which don't irk them as they seem to be unaware of the deficiency.

dreamdaisy

Hello daffy, how lovely to hear from you, is everything OK? I ask because I haven't seen your name lately (mind you, I'm hardly haunting the corridors of Arthritis Mansions / Nissen Hut myself).

Your reply was the usual daffy - concise, witty and so true. I am very off-line at the moment and too tired to be frustrated by it which speaks volumes in itself. Things I would normally be up and doing are not even being considered as worth trying: tomorrow is another day to not achieve. I am not myself, I am not overly-fond of the person who is currently masquerading as me and hope she will be dispensed with sooner rather than later. DD

daffy2

Still here DD, just not functioning very well! I've been reading but not getting it together to respond, but your comment about marshmallow brain struck a chord. 'Oh that'll be fibro fog' said my friend cheerfully, and she could well be right; whatever, it's proved expensive as I forgot that if I did shopping and other errands before going to the arthritis support group meeting I would over-run the 3 hours free parking...so there'll be an envelope appearing in due course. Can't muster the energy to berate myself - which is possibly not a bad thing as it doesn't improve matters. Just as well I only have very limited working hours and understanding colleagues - although losing the thread when I'm answering queries from visitors is a little harder to cover up!

dreamdaisy

I am sorry to hear that, daffy, it is so frustrating at times no matter how long one has been a full-time practitioner of the arthritic dark arts. I did the imraldi on Tuesday (as insisted by the consultant) and have accordingly returned from whence I came, being more lethargic and more woolly-headed. Her argument that the imraldi is identical to humira is utter baloney and proves once more she is an expert in theory, leaving me to deal with the reality. I regret not trusting my instincts but desperate is as desperate does (whatever that means).

When I was much younger I had two Liberty cloth frogs, one was half-stuffed with rice, the other with sand. The sand one sprang a very small leak and within days was just a limp piece of very pretty fabric. I'm not even that. I'm Eeyore's burst birthday balloon. DD

daffy2

From what I can gather the active ingredient - adalimumab - is the same but what it is also included in the liquid(ie excipients) isn't.
[Humira
6.1 List of excipients
Mannitol
Polysorbate 80
Water for injections
Imraldi
6.1 List of excipients
Sodium citrate
Citric acid monohydrate
Histidine
Histidine hydrochloride monohydrate
Sorbitol
Polysorbate 20
Water for injections]

Whether that has any bearing on your situation - who knows? It could all be an unfortunate coincidence.
However it is a wider issue that the NHS needs to address as it, understandably, tries to save money on drugs. The fact that an active ingredient is identical doesn't mean that the product itself is identical, and the different 'fillers' of different brands may cause problems in patients. Even well known issues such as lactose intolerance are not taken into account as much as they should be when changing drug brands. There is no doubt that some patients will think themselves into adverse effects when their usual drug is changed, but dismissing all reports of adverse effects risks throwing the baby out with the bathwater, and ultimately won't save money.

stickywicket

A very pertinent point, daffy.

Years ago, when I could still take NSAIDS, they started prescribing generic meds. My voltarol was changed to diclofenac and I noticed a quick decline. My GP said at the time that, with generics (and now with bio-similars - though, obviously, the GP didsn't say that back in the day ) the active ingredient(s) had to be the same but the inactive ones might make a difference. He put me back on voltarol and i was OK. (It's always amused me when people on here extol diclos over nap and ibuprofen. Horses for courses.)

I hope the return to humira will represent a return to mod grot, DD.

dreamdaisy

Thank you, daffy, that made for interesting reading. Both Mr DD and myself were surprised at how readily she suggested my returning to humira which makes me wonder if others who have been swapped from humira are also struggling. She considers my PsA to be in remission so maybe wants to keep it that way. I don't and would like to get it that way. DD

dibdab

Hi DD, just popped in to see how things are progressing, hope your extreme worthiness is improving, even if just a little, and that the return to humira helps. Have the bbs returned to the bottom of the drawer yet?
Deb x

dreamdaisy

Hello, thank you for asking after me. The grot continues unabated but never mind: the beige beauties are to hand, the cocos are sliding down nicely, I'm doing all I can to ensure I can do the barest minimum. It's lovely having a retired husband about the place but he does have sight problems in that he can't see dust, overflowing laundry baskets or a sink in need of bleaching. Neither does he understand that vacuuming the kitchen floor between the sink and the hob doesn't keep the other bits of floor in other rooms clean. DD

dibdab

Strangely DD I seem to have your hubby's twin helping keep me and the house in order whilst endeavouring to rest enough for the slipped disc to mend! But what would we do without them?

dreamdaisy

Bumped up for sweetwilliam.

dreamdaisy

My my, how time flies when one is enjoying oneself. I am a month on and still not feeling any better so I can only conclude that the imraldi is the culprit. It has had enough time (or rather my body has) to return to moderately grotty but it won't happening soon: I have another seven to go (HaH unexpectedly delivered another six in the second week of June) so that's another three months of this at least. I will begin the tedium of more medmin next week in trying to find out where I am regarding the move back to humira.

I know that although it cannot be much better than this, at least a little better was once the norm. I completely understand that, should it happen, the shift back to humira will not be the golden key to the kingdom of an arthritis-free life - there's only one way that is gonna happen and I won't know a thing about it - but I am getting seriously grumpy about feeling like this. I have upped my VitD, and started taking an iron supplement, I am forcing myself to exercise but despite all this I am cultivating another boil, can sleep at Olympic Gold Medal standard, and my mood is deteriorating. Cheers everyone! DD

stickywicket

%&$%£~@# and

I'm sorry you're feeling t2507

and I am searching for your t115006

Meanwhile, I wish you m0150 not t111055

and send a few t69044

dreamdaisy

Thank you, Sticky, I appreciate it. I am out of kilter with myself and seem unable to do anything about it, which is irksome. DD

daffy2

DD I do hope your kilter realigns itself before too long; having the sporran hanging awry is awful inconvenient.

dreamdaisy

Oh Daffy, thank you! We have a new code-phrase for when I am not at my best (to be uttered in our best Dr Finlay's Casebook tones) viz. 'Oh dear, my sporran is hanging awry.' Short, subtle, informative and incomprehensible to all those who are not spies. Perfect. DD wanders off, whistling the Dr Finlay theme . . . .