I’m interested to hear off anyone with RA that’s found private medical healthcare at a reasonable cost and low deductibles ? (Long story below)
Diagnosed in 2011 and the first biological drug I started worked perfectly until recently (cimzia) I’m now in the process of changing drugs, but I’ve been left for 3 months and counting, in the biggest flare up I’ve ever had as cimzia no longer works I’m in a severe flare up with no drugs basically. I’m under nhs wales and the process is painfully slow. Now they’re pushing a brand new drug that barely anyone is on in the Uk I’m told I’d be the first in wales and I’m feeling extremely fed up and deflated.
I’m 30 years old, mother to a 20 month old and am a self employed worker, my partner works full time. I’m at a bit of a loss that it’s ok to leave someone in this way for so long and I’m struggling to cope since beginning of March - with my boy and work. I can barely drive my car, tend to my boy, I work but the following day I pay for it, dressing myself and general activities is excruciating - sufferers will understand
So my question is can you get reasonable private cover because I’m absolutely sick of this slow treatment from the nhs
Anyone heard of the drug Kevzarra - this is the drug im being advised I need to swop too (against my request for a different one)
Thanks any help is appreciated
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BB2408
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Getting private health insurance is unlikely to change your situation dramatically as pre-existing chronic conditions like RA are usually excluded. And biologics can only be prescribed by an NHS rheumatologist. Sorry.
What you might find more helpful would be to book an appointment with a private rheumatologist (preferably one who also works for NHS so you can transfer) and go through your concerns. But it’s rubbish if your doctor hasn’t explained to you why they thing Kevzara is a better option.
Interestingly there’s a post yesterday from Hessie5 who’s in a similar position and has just started Kevzara! It isn’t a new drug, just the biosimilar of sarilumab.
Thanks for the reply. I wasn’t thinking of private to get my current situation resolved quicker, but more so really for just general future care. If this is how fast the nhs can turn around swopping a drug then I’m filled with dread if the next drug doesn’t work and so on...
Not a new drug but new to prescription for the nhs, I’m just in a position that I feel a more tried and tested (I appreciate most biological are newish) one would be better at this time and that was my choice. But they’ve since said they’d rather this Kevzarra.
I’m just so deflated with the overall care I’d rather pay and get better care but it seems it’s unlikelt with RA
I think from what I’ve read that Wales is particularly stretched for rheumatology cover. So you’ll have to be extra assertive to get heard. Have they not even offered a steroid jab to tide you over (if you respond to them of course)?
Maybe talk to a couple of the big insurance companies to see what would be covered? It was a while ago now but my mother did have cover (for another condition) that meant she was treated privately when she had a flare, and as soon as everything back under control was handed back to NHS for ongoing treatment. But I don’t know if that’s an option with RA and biologics.
The drugs are so expensive that private insurers don't have the set-up to fund them or how they are administered and supervised. A one off appointment (self-funded) might help to get things moving but you would be unlikely to get private medical cover without a large excess.
It is very frustrating that because of under-staffing and lack of resources the rheumatology service in Wales is poor with very long delays and lack of review (in contrast to diabetic services).
You could complain via PALS, approach your MP/AM for support, and write a letter explaining your frustrations (politely!).
It really is. I have total respect for the nhs workers most the time but the difference in my care in 2011 (when first diagnosed) to now, is worlds apart. I’m at a point now I’d pay for better care but as you’ve explained it’s not happening as a RA sufferer. Makes this horrible condition even worse knowing this care is the best you’ll get
Sorry to sound so negative Im just waking up daily feeling absolutely drained and the end isn’t even in sight yet.
I can understand your frustration. But I keep telling myself, don't get angry, do something! If you write letters it doesn't just help you but others, so if you have enough energy (and that's always the problem with this condition) try to do so. Easy for me to say, difficult for you to do...
I think I will write. I’m here this morning alone with my toddler and I can barely even change a nappy as my wrists are the heavily affected. It’s agony, I get frustrated as he (unintentionally) hurts me kicking around as they do - and then I’m absolutely filled with anger towards the slow nhs response. Why should I be left in this way ??? (as many other are too) barely enjoying time with my boy because it’s just agony to do small tasks.
I feel for you. Am in a similar situation myself, I switched from humira to cimzia in January and have been in a terrible flare since. I am now waiting for funding for the next one to come through.
While not ideal, I have now been put on oral steroids for 8 weeks to bridge me as life was becoming impossible. Maybe that could be considered to help?
I go privately to a rheumatologist in the centre I go to when the NHS gets into a bind and is unable to provide timely steroid injections etc. I pay myself. This happens about every 12 - 18 months.
For a second opinion to feel better, do it, but ultimately as people have said, they won’t prescribe.
My advice is to keep chasing the NHS, secretaries, nurses, email the doctors directly. I am relentless and chase everything. When nothing happens, I have sometimes gone and sat in the clinic till they see me (sometimes that doesn’t even work!)
I hope you get some relief. As much as I hate them, the relief from pain from the steroids for the last 2 weeks has been welcome and I’m able to work again
I feel for you. I have had a large steroid injection back in March which took the edge off as before that I was bed bound. Couldnt drive or do anything it’s the worst thing I’ve ever experienced. Sadly it’s not helped anywhere near as much as previous shots. I had a short course of steroid tablets and naproxen but that didn’t even get put on a repeat (which I’d requested l). It’s just shocking service.
Annoyingly last summer I had a flare and told my consultant I thought cimzia had stopped working. As I’d had a steroid shot so was looking / feeling better he disagreed. Kept saying I looked fine. Which I explained was the steroids. Anyway 7 months on I’m in the biggest flare up I’ve had so in hindsight my gut was right. So I’m also bitter that no one listened to me then.
Sadly, private medical insurance companies will not cover RA for new applicants as a pre-existing condition that qualifies after a period of time, as they consider it an incurable disease. Even if you have been with a medical insurance company for a long time they are very picky about what they will & won’t pay for if you are diagnosed with RA - as I found to my cost- there is an inquest every time you need to have treatment as to whether RA is involved.
They also don’t pay for Biologics or in fact any outpatient drugs- the Private Consultant advises your NHS GP what drugs he prescribes , & the GP either issues an NHS prescription or you have to pay to buy them with a private prescription- which can be prohibitively expensive....but that does not include any Biologics & in a lot of areas there are no private rheumatology nurses....so you have to pay a fee every time you need advise to see the consultant.
From reading posts on here & on other HU sites, Nhs Wales does seem to be struggling with employing not only Consultant rheumatologists....but specialists in all areas.....which presumably is why you are finding it so difficult to get the rapid treatment you need.....but maybe a one off private Rheumatology consultation for an overall review of your condition would help...if your GP could then issue Nhs prescriptions or therapies like physio .....but that would not work when Biologics are concerned......have you spoken to your rheumy nurse & asked what she advises? She will no doubt have come across your situation before.
Having a Private consultation to review your present treatment may indeed buy you a better outcome , although you would have to convince your NHS Rheumatologist & your GP that a treatment change would help.
You sound as if you do need more efficient /different treatment....so if no changes are forthcoming in the near future from your present medical team I’d to give a Private consult a try. After all, a second opinion is always permitted.
With RA as you will have read here....what is Gold Standard treatment for one person , can be useless to another....so do try to keep battling away & don’t stop questioning your treatment until you are in a much better place.
Good Luck....I hope you find better treatment very soon.
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