A 29-year-old Chester woman with arthritis is facing the possibility of a double leg amputation. Phoebe Phillips, who has been living with severe arthritis for seven years, is preparing herself for the prospect of double knee replacement and potential double leg amputation.
Offered treatments over the years which have targeted the symptoms, but not the cause, Phoebe's agony was 'so severe' that her GP had to prescribe tramadol and liquid morphine so she 'could survive the days'.
Double Knee Replacement and Amputation
Advised that a double knee replacement is the only course of action, Phoebe would need to have the procedure repeated throughout her life before potentially requiring a double amputation above the knee. Saying she feels 'dismissed by doctors', Phoebe is fundraising to pay for further care privately. The double knee replacement surgery is forecast to cost upwards of £15,000.
Speaking to PA Real Life, Phoebe said: "I've missed out on my entire adulthood so far. It's really the small things that are so much more important to me. Just to be able to go up and down a couple of stairs like a normal person… Standing in the shower and not having to sit down – all the small stuff. I can't even sleep in a normal bed, I have a rail next to the toilet, and all those kinds of things that I just shouldn't have to be dealing with, if I'd have been taken more seriously sooner or listened to."
Diagnosis and Early Symptoms
Phoebe first experienced symptoms in October 2018. 21-years-old at the time, Phoebe noted that 'it really just happened from one day to the next'. She explained: "My right knee basically just blew up overnight… It was the same width as my thigh, and it felt really numb. Over the next couple of days, I just thought, maybe I've tripped, I've hurt it, and I just don't remember. I iced it and elevated it and did all the things that you should do."
With the pain getting worse as the days went on, Phoebe couldn't put any weight on it. Phoebe claims that her symptoms were 'dismissed' at first by her GP, who she said suggested that she 'had been out dancing and tripped in her high heels'.
Eventually getting an appointment with a rheumatology consultant at the Countess of Chester Hospital four months later, Phoebe was diagnosed with psoriatic seronegative inflammatory oligoarthritis. According to the NHS, psoriatic arthritis can develop in people with the skin condition psoriasis, and most commonly affects the knees, hands, feet, elbows, neck and spine.
Treatment Challenges and Progression
"At that very first appointment, I got both of my knees drained, which was very scary – they come out with the massive thick needle and stick that right into the middle of your knee. From then, I was basically just told: 'This is something that can be controlled very well, we have a lot of medications for it, and we can start you on the first one straight away'," she recalled.
Informed that the removal of the inflammatory fluid in her knees should help to alleviate the pain, Phoebe was started on methotrexate, an immunosuppressant that is used for arthritis and psoriasis among other conditions. With the methotrexate making her feel 'violently ill', Phoebe was then also put on sulfazalazine, an anti-inflammatory medication, but said it caused her chest tightness so she was advised to come off it.
"I was just never really told what the forecast was. Any time I would try and ask about it, I was told: 'Well, it's different with everyone. It's not really something that we can predict'. And obviously, being in the situation that I'm in now, I know that actually there are several things that they can 100% determine will happen at some point in the future, they just can't tell you when. Which is unfortunately not what I was told," she said.
Over the years, Phoebe said her condition has 'progressed massively', with it remaining most active in her knees. On top of this, Phoebe said that 'it's in my sacroiliac hip joint, in my elbows, wrists, and hands – it's basically pretty much everywhere now'.
Fundraising for Private Treatment
Opening about an X-Ray she had in April 2026, Phoebe stated: "I have no cartilage left whatsoever in my knees. Although I was medicated, it wasn't actually treating the disease for so long. So because of that, that's why it's worn down so much… But no one had ever discussed with me that that would even be something I'd have to worry about.
"I asked my doctors for years, can you please just look into it? I can feel that it won't move, and it's not for my lack of trying. I can feel there's something in there. I asked for scans over and over again. I was just told: 'No, this is just what the disease does, it's probably just swollen'.
"Even when I asked to speak to an orthopaedic (consultant), I was told point blank that no one's going to look at it because you have active disease inflammation, so we won't refer you. So then, obviously, it's taken years and years to get to that point when I finally got referred."
Phoebe has been told that her only option to regain proper movement in her knee joints is to have a double knee replacement. However, the procedure would have to be repeated every 10 years as the replacement joints will eventually wear out. Sadly, the bone loss from repeated surgeries over time will lead to an above-the-knee double amputation being the only course of action.
"I've missed out on my entire adulthood so far, and I understand that that means that maybe in 10 years, maybe 20 years' time, that I would be an amputee. But arguably, in my book, being an amputee would actually be better than what I've been dealing with, so I'm okay with that. I just feel like there's so many things that I would have wanted to do in my life, and now I can't. And the frustrating thing is, it's not just down to the disease, but it's how it's been treated and how it's been managed, which is such a big problem for me," she said.
Through her own research, Phoebe has found that there is one more treatment available prior to the knee replacement surgery: an injectable drug called arthrosamid, which is designed to treat knee osteoarthritis. Despite 'the likelihood of it working is quite slim', Phoebe believes it is 'worth trying before jumping into a major surgery'.
Due to her going private with her healthcare, she understands it will cost between £12,000 and £16,000 to have a double knee replacement, and she has launched a fundraiser on GoFundMe to begin the process. She's looking to raise £6,000, which she hopes would allow her to test the arthrosamid and seek initial consultations so she can find the right doctor for her treatment.
"I want my life back. I want to stand up straight again. I lost my entire 20s to this disease, trapped in my house when friends and peers were out living, I couldn't often join them. I would love to be able to live a bit again, enjoy my 30s, maybe," she said.
A Countess of Chester Hospital NHS Foundation Trust spokesperson said: "We are committed to providing high quality care for all our patients and their families. Whilst we cannot comment on individual cases, if patients or their families have any concerns regarding the care they receive, we would advise them to contact our PALS team on 01244 366066, or email cochpals@nhs.net who will be able to support them."
