Can any one explain to me, is there likely to be any more neurological improvement after the ' every other day' injections stop. My improvement seems to have slowed down although i have had no more than one or sometimes two jabs per week since mid August, because the nurse couldnt fit me on the schedule.
The GP is keen to stop all injections as the haematologist has told her that there will be no more improvement after around 4 weeks. I questioned her about this but she was adamant. Will improvement happen even under the 8 weeks regime. Each jab makes me feel so very tired for half a day can it be harming me in some way? I would be glad of some opinions. Thank you.
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Damseltree
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This suggests the possibility of a review of every other day loading jabs after three weeks but I'm pretty sure it does not say they should stop after 4 weeks.
If improvement is continuing even if it has slowed down then my understanding is that every other day jabs should continue.
Do you have any evidence of continuing improvement eg a symptoms diary?
Perhaps someone could come with you to next appointment and vouch for you that improvement has continued.
If you're a PAS member I suggest ringing them tomorrow and seeing if they have any info or suggestions.
I've been self Injecting every other day since Xmas.
My burning tingling feet started to turn painful when walking around February, as if walking with pebbles in my shoes. So my symptoms got worse after 2 months of every other day.
After referral to a Neurologist, she said to keep on Injecting every other day & hopefully, in time my nerves world repair themselves, though it could be a long time. This is because the Injections start to repair the damage caused before we see improvements, though everyone varies.
Recently I've noticed that my feet aren't as nearly as painful & the tingling & burning is less noticeable. So I'm hoping the damage is now repairing.
While I can’t comment on continued improvement, I can say that while I have done every other day injections, excluding the weekends, I do fine. If I try to cut out my middle injection, I start with neurological symptoms again. I have also tried to cut down to one injection per week for a month and experienced that overwhelming fatigue once injected. I would just tell myself my body can’t heal without rest. It’s harder to keep up with that single injection per week. So I guess I’ll just keep doing what I’m doing. It’s hard when you feel like there is no real knowledge within the medical community. Definitely a lonely health issue.
Hi Damseltree . On the whole, I actually became worse on every other day injections in the first 4 weeks which is not an uncommon experience (though some things cleared up quickly like my brain fog), and didn't really see any significant improvements until after 8 weeks and was on weekly injections. I'm at the 6 month mark now, injecting weekly and still seeing improvements which is awesome. So yes, it is possible you may experience improvements well beyond the 8 week mark. Bearing in mind it is all dependent on personal circumstances, how long you have been unwell for, what you're symptoms were, etc. It varies from person to person. All the best
I didn't start to get better until they restarted my loading doses again 8 weeks after the initial 3 x over 2 week injections. I still had every symptom on the list so they did them for another three weeks and said I would now have them every 8 weeks.
A few weeks later my symptoms were getting worse again, a locum doctor looked up the NICE recommendations I showed him, put them on my notes and agreed to do them for another 4 weeks. This was strongly questioned by one of the senior nurses who said that was not the way they do things here! she went to see him before giving the injection but must have been told to do it but was very reluctant to make further appointments. The next senior nurse I saw said shall I make all the rest of the appointments now?
I was still slowly improving but still had symptoms. However my brain fog was much better and I had learned so much more about the condition and with the support of the lovely senior nurse who made the appointments was able to ask for them to continue until I wasn't gaining any improvement from them and then I would be willing to go back to the every 8 weeks.
All this time doctors were saying the usual things about having toxic levels, dependency as in alcoholics etc, etc.
I wasn't that hopeful but they've agreed that I can have the injections twice a week until there's no more improvement! The wonderful nurse that told them she is still seeing improvement is going to be responsible to monitor this and has even showed me how to self inject so that I am able to go on holiday next week!
That is what happened to me. The best improvement made after restarting every other day after a 6 week break after initial loading g doses. I'm still on 2 weekly.
Try and get more injections if you can Damseltree then reduce thrm when you think no further improvement.
It's difficult to gauge. You haven't even had the correct regime yet. So showground are you still on alternate days? Very good they showed you hoe ti self inject.
I was on that regime every other day in fact from some time. Restarting in January. I'm now on 2 weekly. A gradual change . Yes I hope you get some benefit.
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