Newly diagnosed Psoriatic Rheumatoid Arthritis sufferer

aj91

So I thought I'd write a post to say hello, with a view to meeting and connecting with fellow sufferers and getting some much-needed help/advice.

I'm a young man in my mid-twenties, some might say I'm in the "prime of my life", but thanks to my recent Psoriatic Rheumatoid Arthritis diagnosis, I certainly don't feel it.

About 14 months ago, I injured my left knee playing football. It was a fairly minor injury, I simply bashed into a wall on the edge of the pitch. Unsurprisingly, the next day I had some swelling and some bruising. The bruising disappeared within a couple of days, but the swelling remained. I visited my GP after a month or so, who advised that knee swelling can take anything up to 3 months to subside. I continued to wait patiently, but after 6 months I still had swelling and my pain had increased. I visited my GP again, who referred me to my local hospital Orthopaedics department, fearful that I may have done some cartilage damage.

The Orthopaedics team did many investigations, including scans (MRI etc.), blood tests etc. The scans didn't show any cartilage abnormalities, just swelling, as expected. My Orthopaedic consultant was stuck for ideas, confused at the situation. Since my Father is a Psoriatic Rheumatoid Arthritis sufferer, I asked the question: "Could it be Arthritis?"
My consultant was quick to dismiss that possibility, with comments such as "it can't be, you're too young, both knees would be affected, and the blood tests showed nothing."
He suggested the only realistic next step would be to perform an explorative arthroscopy operation on my left knee, to try and establish what the real cause of the issue is. I decided to go ahead with this.

Cut to January of this year, whereby I had my operation. My consultant found no traces of cartilage damage. In fact, he commented that my knee joint itself was in "fantastic condition", just swollen. Curious to get to the bottom of the issue, they made sure to take many tissue samples for testing. Two weeks later, my recovery was going well, and I had a follow-up appointment with my consultant. He explained to me during this appointment that the tissue samples taken had shown signs of severe rheumatism, which would explain the cause. He was apologetic and referred me immediately to my local NHS Rheumatology department.

Though I was pleased to finally be getting some answers about my condition, the operation caused some very severe symptoms. Operating on my knee cause the inflammation to go completely wild. Within 4 weeks of the operation, my knee swelled to such an extent that I could not physically move or bend my leg, causing absolute agony. Furthermore, it caused bruising all down my shin. It was so visually concerning that I was rushed to hospital with a suspected DVT (Deep Vein Thrombosis). My knee was aspirated to reduce my pain, and over 100ml of synovial fluid was collected. There were no signs of infection, just standard synovial fluid.

Since this time, my knee has swelled to this extent a further 5 times, requiring aspiration on each occasion to restore my mobility and provide me with at least some relief. I have spent the last 2 days in my local hospital, thanks to the 5th and latest severe swelling episode. I've started seeing a Rheumatologist through the NHS, who has given me 2 local steroid injections (in the knee) and 2 systemic steroid injections. These have had a short-term impact: the most recent was just over 10 days ago, and already I've ended up hospitalised since. My Rheumatologist tried me on Sulfasalazine for 4 weeks, but I reacted badly to it (sickness, vomiting, fever etc.) so I was taken off that and left 4 weeks without medication to allow it to exit my system. I have just recently started Methotrexate, taking my first dose within the last 4 days. My Rheumatologist has referred me for a synovectomy operation on my knee as they feel this might be the only solution for this joint specifically, but there is guaranteed to be a long wait for this.

The impact my symptoms are having on my life (particularly my knee swelling), as a young sports enthusiast and proud homeowner, is so damaging. Since my knee operation, I've been made redundant (likely due to a related reduction in my performance) and as such battled through pain and fatigue to desperately find a new job, terrified of losing the home that I've worked so hard to achieve. I'm scared still, since I'm still in a probationary period with my new employer, and already I'm being forced to take time out of work for medical reasons. My most recent call to my local hospital's Rheumatology advice line resulted in me being told that there's "nothing they can do for me", and that I need to "stop stressing" and "get on with it". I voiced my concerns about my employment situation and affording my home, but I was abruptly told that there's nothing they or I can do, other than wait for the medication to 'hopefully' work (which I'm told could be a period of anything up to 3 months).

Honestly, I'm at a loss. I'm normally a vibrant, exciting and optimistic young Man, but I'm running out of strength. I'm tired all the time, I'm in pain all the time, and no one seems to be able to help me. I'm desperately upset about the impact Psoriatic Rheumatoid Arthritis is already having on my life, and terrified that this is only going to get worse. I'm fearful that I'm going to lose everything that I've worked so hard to achieve, as a result of a medical condition that is beyond my control.

That's my story, up until the present. I hate to say this, but yes, I am appealing for advice. Anything that anyone can offer me, will be so greatly appreciated.

Thank you in advance to everyone for whatever support you can offer. I'm looking forward to getting to know you all.

daffy2

Hi aj, just wanted to say welcome and I'm so sorry to hear you are facing such difficulties. I have 'the other' kind of arthritis - osteo - so can't be of much help with yours, but there are others on the forum with your kind who will I'm sure be along before too long. Fatigue and pain are common regardless of which sort one has though so we can all sympathise with that - as one of our forumites says 'we get it because we've got it'. We may not be able to fix things but we can listen, support and encourage.
Regarding your worry about your home and being able to afford the mortgage, do you have a spare bedroom that you could let out?
These links give more info.
https://www.gov.uk/rent-room-in-your-home/the-rent-a-room-scheme
https://www.moneyadviceservice.org.uk/en/articles/rent-a-room-scheme-how-it-works-and-tax-rules#whos-eligible-for-the-rent-a-room-scheme

aj91

daffy2 wrote:

Hi aj, just wanted to say welcome and I'm so sorry to hear you are facing such difficulties. I have 'the other' kind of arthritis - osteo - so can't be of much help with yours, but there are others on the forum with your kind who will I'm sure be along before too long. Fatigue and pain are common regardless of which sort one has though so we can all sympathise with that - as one of our forumites says 'we get it because we've got it'. We may not be able to fix things but we can listen, support and encourage.
Regarding your worry about your home and being able to afford the mortgage, do you have a spare bedroom that you could let out?
These links give more info.
https://www.gov.uk/rent-room-in-your-home/the-rent-a-room-scheme
https://www.moneyadviceservice.org.uk/en/articles/rent-a-room-scheme-how-it-works-and-tax-rules#whos-eligible-for-the-rent-a-room-scheme

Hi there, thanks for your advice and thanks for the links as well.

Unfortunately, I can't let out a room. I do have a 2 bedroom place, but because it's on a part ownership scheme, I cannot legally sub-let it in any way.

I've just got to hope and pray things improve soon.

dreamdaisy

Gosh, this reminds me of me back in 1997. My left knee began to swell and kept swelling: by the time orthopaedics took action in early 2002 it was 27" in circumference with fresh plus solidified swelling. Rheumatology were positive I wasn't in their gang until five months after the operation (an open synovectomy). it began to swell again. They reluctantly took me on and I had another open synovectomy on that knee the following year .

I began on sulphasalazine which I had no problems with but it didn't bother tackling the arthritis so tablet meth was added. That caused a rash so was stopped. Over the years you name the drug, I've probably had it and am now on injected meth and injected humira:. I was classed for four years as having an unspecified auto-immune inflammatory arthritis but, when my skin helpfully obliged with a bout of pustular psoriasis on my soles and palms, the medical penny dropped and I was labelled with psoriatic arthritis (PsA).

PsA is not the same as rheumatoid, it damages the joints differently as it affects the enthesis, the parts where the muscles and ligaments attach to the bones. I began the arthritis without the skin trouble, now I have occasional bouts of psoriasis but that is well-controlled with the meds. I was born with an over-active immune system so for me this is more of the same. It is difficult to diagnose from blood tests as it is a sero-negaative form of auto-immune arthritis (RA is a zero positive kind, i.e. rheumatoid factor is present). No-one is ever too young for arthritis, it's an equal-opportunites disease so very PC.

I'll stop now because I am away and using a very unfamiliar keyboard which is driving me round the bend! I'll be back soon though, so please ask any questions you may have and I will do my best to answer them. I am now in my 22nd year of dealing with the dross so know my arthritic onions. DD

aj91

dreamdaisy wrote:

Gosh, this reminds me of me back in 1997. My left knee began to swell and kept swelling: by the time orthopaedics took action in early 2002 it was 27" in circumference with fresh plus solidified swelling. Rheumatology were positive I wasn't in their gang until five months after the operation (an open synovectomy). it began to swell again. They reluctantly took me on and I had another open synovectomy on that knee the following year .

I began on sulphasalazine which I had no problems with but it didn't bother tackling the arthritis so tablet meth was added. That caused a rash so was stopped. Over the years you name the drug, I've probably had it and am now on injected meth and injected humira:. I was classed for four years as having an unspecified auto-immune inflammatory arthritis but, when my skin helpfully obliged with a bout of pustular psoriasis on my soles and palms, the medical penny dropped and I was labelled with psoriatic arthritis (PsA).

PsA is not the same as rheumatoid, it damages the joints differently as it affects the enthesis, the parts where the muscles and ligaments attach to the bones. I began the arthritis without the skin trouble, now I have occasional bouts of psoriasis but that is well-controlled with the meds. I was born with an over-active immune system so for me this is more of the same. It is difficult to diagnose from blood tests as it is a sero-negaative form of auto-immune arthritis (RA is a zero positive kind, i.e. rheumatoid factor is present). No-one is ever too young for arthritis, it's an equal-opportunites disease so very PC.

I'll stop now because I am away and using a very unfamiliar keyboard which is driving me round the bend! I'll be back soon though, so please ask any questions you may have and I will do my best to answer them. I am now in my 22nd year of dealing with the dross so know my arthritic onions. DD

Thanks for your reply, doesn’t sound all that positive though. Hope you’re ok nowadays?

I’ll look forward to hearing more of your experiences. Right now, I could really do with some advice regarding reducing the swelling in my knee somehow. Even since last night, it’s blown up like an absolute balloon again. The pain is dreadful, and it’s keeping me from working.

daffy2

Hi aj. Shared ownership certainly complicates matters, but taking in a lodger(where you continue to occupy the house) isn't the same as sub-letting(where you let the vacant property), so would be worth contacting whoever owns and manages the property(HA?). Citizen's Advice might be able to help with what your options are. SO companies are in it to make money and some are willing to be flexible in order to ensure continuity of revenue. Those that have been state subsidised will be less so, but even then you won't know unless you ask.
By the way if you choose the 'reply to topic' button (in red lower down on left hand side than the 'reply with quote') it'll make the posts shorter.

aj91

Thanks all.

As per my previous post, the main priority for me at the moment is trying to reduce the extreme swelling in my knee. Genuinely, it's so swollen that I cannot even weight bear on it.

I think the investigation of my options through the CAB etc. needs to be a topic for once I've at least sort of got these symptoms under control.

Can anyone give any advice at all? Nothing seems to be stopping my knee from swelling, it's just getting steadily worse.

stickywicket

I'm not going to be much help except to say it will get better. How much better it will get is in the lap of the gods.

I have RA not PsA but it's much the same and the meds are the same. Unfortunately, it can take some time for the meds to work and they just won't be hurried. All I can suggest in the meantime is to rest and elevate the knee whenever you can. I have new knee joints now but, when my originals were at their worst, I had two small boys to look after so I do empathise. Some people find that heat helps but others, myself included, prefer ice to reduce (somewhat) the swelling. If you do this remember to put a towel or something between the ice and your knee.

It's annoying and scary that, whatever our needs and priorities, arthritis has its own agenda and simply doesn't care. I keep telling myself that the more inflexible the joints the more flexible the mind must be. Another thing is that it feeds off fear so the pain seems much worse when we are scared of it.

It's a cruel disease but the outlook is much better for you than for your father. The medication has come on in leaps and bounds since the modern DMARDS were first prescribed in the '80s or '90s. (I can't remember which.)

aj91

Thanks for your reply.

I'm doing my best to do exactly as you say, rest, ice, elevation etc. but it just isn't stopping swelling. It just keeps on going and going.
It's stopping me from commuting into London, and as a result, is stopping me from working. When I don't work I don't get paid, and if I don't get paid then I will lose my home.

I've spent the morning just crying my eyes out. It's not like me to cry, but I feel so helpless. I'm utterly desperate for help, but whoever I speak to from a medical standpoint just isn't interested.

stickywicket

I'm so sorry. It's not often I do the virtual hugs thing but my son and grandson are both sporting fanatics and I know how hard this would hit them so....((( )))

It's not that the medics aren't interested but that they're already doing all they can. They've aspirated. They've given you steroids, which work for some but not others. They've tried sulfasalazine and now they're trying methotrexate. There are other meds if the meth doesn't work but, sadly, it's just a matter of trial and error until the right one, or the right combination, is found.

Before I got my new knee joints I had mine aspirated and steroids shoved in. I tried acupuncture and all sorts of weird diets. Only the meds really helped once they kicked in. Methotrexate did it for me along with hydroxychloroquine.

If you swallowed any pride that arthritis leaves us with, could a family member help with your mortgage until things improve?

It might be useful for you to talk to one of our Helpline people. The freephone number is at the top of the page. They are very understanding and knowledgeable.

dreamdaisy

My knee kept swelling, exercise of any kind including walking aggravated it but I kept walking because one has to. I wish someone at that stage of things had told me about the benefits of using a stick, it should be held in the hand opposite to the affected side and it helps to ease some of the weight forced through the knee when walking. I rested it in the evening, ensuring it was supported by a pillow. To this day I sleep with a pillow between my legs to protect both knees and to raise my upper hip (I am a side-sleeper).

My then GP was rubbish which is why I went for so long without medical help: she said it would go away, sort itself out and I believed her because up to then my experience of GPs had been very positive. It was the physios at my local footie club who referred me to orthopaedics who, before they deigned to do anything referred me to rheumatology: they referred me back to orthopaedics so all that took another year before the first op. was done.

If it wasn't for the arthritis I'd be fine I began with one joint but, as arthritis is a progressive and degenerative disease, and I started the meds far too late with far too little, I now have forty affected joints. Some have PsA, some have OA and others have both. Life became much easier to manage once being pain-free became a thing of the past, I hurt from top-to-toe all the time but I am used to it and manage it with distraction and regular doses of co-codamol; I usually take four per day as that leaves room to manoeuvre when things are aggravated. Despite the meds the PsA flares, I am now emerging from one that lasted months; the weather affects the OA as does my overdoing things but at least I can control the latter. Unlike me a friend who also has PsA began sulph within a few weeks of his diagnosis and to the day remains beautifully controlled on just six tablets per day. Neither of us understands how life is for the other.

I had my knees drained but the fluid always returned because the meds were not controlling disease activity. Steroid injections never worked apart from one in my right ankle for the OA, that worked well for three months but of course it all came back. :roll: I don't bother with them now. It took years for me to find the right combination of meds, and things are OK but of course the joint damage is done, cannot be undone, and things will never get better as people understand that word in a medical context. I'm not bothered, life started badly and has continued in the same vein so no change there! One of the great advantages of never having had good health is that this nonsense is easier to acceptance and manage. I will be sixty next year so that will mean I have been arthritic for nearly a third of my life, it may be part of my life but it does not define me, it does not defeat me. It's not easy learning to live with it but it can be done. DD

stickywicket

How's it going now? I've been thinking of you.

aj91

stickywicket wrote:

How's it going now? I've been thinking of you.

I appreciate the thought. Not well, unfortunately. My knee is continuing to swell, it's literally rock solid. The pain is excruciating.

I've managed to book an appointment to see my Rheumatologist privately tomorrow but I shouldn't have to be paying for this help. I physically cannot understand how the NHS can justify leaving people in the situation I'm in. It's the same as someone coming into a hospital with a broken leg, and them saying "sorry mate, sling your hook". It's disgraceful, to be honest.

stickywicket

You're in a nasty situation and I do hope the rheumatologist can help in some way though you've already had the obvious treatments – draining it and shoving steroids in. The methotrexate will, hopefully, get to work soon and you might be given oral steroids until it does but they are a two-edged sword. I wish you the very best. Please let us know how you get on.

dreamdaisy

Hello, how did the appointment with the private rheumatologist go? What did he/she have to say, were they able to drain your knee and maybe inject a steroid? If they did I hope you are properly resting the joint, I was always told that 48 hours of total inactivity would help it work. DD

stickywicket

I was wondering too. How are you doing? Any success?