I'm haven't been on the forum for a long time. I've been so busy settling into my new home and supporting two terminally-ill friends.
My RA has been very mercurial throughout all this, with pain and fatigue competing for top billing. I've been on Methojet 25 mg, but am also still on Prednisilone. If I go below 5mg, a flare erupts within 12 hours. I know they aren't good for one, but nor is lying in bed unable to move. I'd rather die dancing!
I did have two sets of Rituximab infusions, but the improvement was minimal and I was completely wiped out for three months. I am now waiting for the funding to be approved for Tocilizumab. I have my concerns about that, but that's not what I'm leading up to here.
My Metojet schedule has been tinkered with by me and by my GP for one reason or another, and because the dosage was also revised, I'm not sure how many doses I am supposed to have in stock. That wouldn't really matter except that I cannot remember if I injected myself on Thursday or not. I have never forgotten a dose before, I don't have a clear memory of doing it this week and my body is crying out for relief with very swollen knees and pain everywhere. So, I am inclined to do the injection now, but IF I'm mistaken and I did do it on Thursday , would one accidental extra dose be a serious matter.
I'm not asking for professional advice, but if anyone has been in this predicament ( and obviously survived it or you would t be reading this!) I'd be very grateful to know.
It won't happen again. I'm going to date all the boxes from now on.
Thanks a lot
J
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Jora
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Can't give you advice as haven't been in that position - but might date my boxes as a precaution anyway!
However a friend of mine had methotrexate treatment for a cancer. She had 25mg a day for 5 days (repeated several weeks later, a number of times). She felt shattered after every round of this, but is alive and well and cancer free. Take from that what you will.....
Hi Jo
As helix helix suggests I would definately mark the boxes. I put a plaster over my injection site so I would always know if I had injected or not.
I'm only on 10mg, 25 is the top dose. If I injected more than one 25 in a week I would ring 111 for advice. I would think having bloods as a precaution would be suggested. I am on a low dose of mtx because it lowers my white cell count too much if I'm in 20/25. Hope that's helpful.
Thanks a lot to Kiki and Helix. Yes, I know, it does sound as if I've been very slack in stock-taking, but until the dose was switched and then briefly stopped, I was always aware of how many should be left in the drawer.
A friend is trying to contact a friend of his (a professor in rheumatology) so I'll go by what he says. This is no time to be flaring - but when is?!
The new house is fantastic, especially my little pod lift. When I can, I use the stairs, but I never carry stuff as I need both hands free to clutch the rail . Stuff always goes in the lift, with or without me. And it's a lot cooler than a stairlift (though a lot more expensive too, I'm afraid).
Glad to hear the lift is proving useful. My gran sold her cello when she went very dead and bought a stairlift. She only ever used it to put her shopping on up to her flat. She lived to be 98.
Although she lived until 98, I expect you meant she went very deaf, not dead! Love it! I'm busy painting, when I can, in aid of the Lift fund! I've even thought of offering rides - tuppence per person per trip! x
Me too. Yours reminded me of the film, "Truly, Madly, Deeply" when Alan Rickman plays the cello - or Juliet Stevenson, in her grief, imagines that he does. A lovely film.
Glad to hear that you've settled in. I think that anyone could find themselves in the same predicament.....I know that I sometimes have to triple check with meds or injections.
I would be inclined to wait for advice from a professional....?if you don't get any joy you could perhaps inject on Tuesday....I have on occasion varied my day by one or two, and I have been ok. Hope you manage to get through whatever....it's a wretched disease isn't it?. Take care. M x
Thanks a lot M. Yes, I think I'll get through the weekend and ring the Rheumaology Nurse (mine is excellent) on Monday and hope she agrees that I inject on Monday which will be mid-way between last Thursday and next. It's very annoying as I am 90% certain I didn't inject, but 10% risk is quite high, I suppose.
Yes, it is wretched, though having just been with someone with Motor Neuron Disease and know which I would rather have. I'm really shocked by the progression of his illness. Quite humbling, really. Jx
Hiya Jo, lovely to see you again, not so much how you're doing. Well, yes, I've been in the same predicament & off my own back I left injecting till the following week, rightly or wrongly though erring on the right side. The difference though was I was quite well controlled at the time (I was also on steroids which took the extra strain) so my joints weren't reminding me I'd possibly not injected. The advice seems clear, you can take your dose if it's within two days of when you should normally take it, three or more days late leave it til when you would normally take it the following week.
If I understand it correctly, a shift of two days is tolerable, so by that rule, could I not bring forward my next one by two days - ie from next Thursday to next Tuesday? And then keep the injecting day as Tuesday thereafter.
One thing is clear, on the weeks that I do have to miss a Metojet for whatever reason, my body very quickly realises. x
I see no reason why not if you prefer to not inject on a Saturday, it's only two days you've (possibly) missed. I inject in a morning so I think I'd leave it til Tuesday evening to give it the extra 12 hours or so & then start the following week Tuesday mornings. Hope that makes sense?
A bit jealous of your pod, sounds just the job for you. x
I think that makes sense. I'm being very thick today. It's not so much how many days I have missed that concerns me, it's the risk of an overdose if I DID inject last Thursday. As I am over the two days, the advice you refer to means that I would now have to wait until next Thursday. I'm taking a risk if I inject sooner. Oh, I think I will have to wait until Monday so that I can ring the hospital helpline. If I was on pills, I would probably take a half dose, but I"m not. Apparently, the real risk of over-dosing is to the bone marrow.
I've already put a date on each of the remaining boxes, to ensure that this can't happen again.
Yes, the pod is brilliant. My cat thinks it's fun too. She doesn't go in it, but dashes up the stairs to meet me with a smug cat face when I appear.
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