New and Lost in Life (Psoriatic Arthritis)

@havinghope I am so sorry that you are now a member of this rather exclusive club. Rheumatoid arthritis is rare in the UK, only around 400,000 diagnosed patients, of which only 100,000 are male. Like us. Here you will find lots of kind advice and a sympathetic ear from your fellow sufferers. I’ve had it for 12months now, and I look back wistfully at my “pre-RA” life, but only for a little while. I used to be a gym bunny and weightlifting was my thing, as well as an avid DIY’er. The first 4 months, after the initial swollen finger that scared me enough to push past dismissals and get help, were the worst.

Walking required a stick, opening jars or even using a peppermill was impossible, as was opening cans, and my taps constantly dripped because my joints had become so weak that I could not turn them off. I got to this website and researched the condition and realised treating aggressively, promptly and making adaptations early in the disease gave most people the best chance of success and saving your joints. So I took all of the great ideas from this site, Electric can opener, electric peppermill, bottle lid opener, changing taps from screw type to lever are all a great help. I have been lucky in that a combo of HCQ, MTX & a helpful Rheumy have allowed me to return to work and made life reasonable. Weightlifting is out, but with the meds I was able to recover sufficient joint strength & function to resume my DIY hobby, which gives me great satisfaction.

The pain & heat was intense , before MTX kicked in and damped down my immune system. Now I am aware its there, and if I get too warm & comfy my knees go red with inflammation, so its often cold showers or staying slightly cool and I am ok.

As for dating, I hear you. As Toni advises, its best to talk to your prospective partner early, this is significant, and they need to know, but also neither one of you wants to find out later its not going to work out, after putting a lot into the relationship. It also is for your benefit, to know who will stand by you, in sickness and in health. Unfortunately my diagnosis proved too much for my ex, who’d only seen me as super gym bunny and arthritic me was too scary for her. That’s ok, we remain friends but no more. Can’t blame her, she didn’t sign up for this, and its better that I know now whom I can count on.

Try to keep a wide circle of friends, and know which ones you can count on, and which are fair weather friends best for smalltalk. You’ll need to know who will visit you wearing a mask voluntarily, tell you in advance they suspect they may be coming down with something, or help move your furniture to adapt to your condition. Some of my beer buddies faded away, scared as the condition reminds them we are not invulnerable, not even weightlifters!

As for treatments… not much progress has been made given the gold standard is a 50 year old chemotherapy drug, and while specific diagnostic tests have been developed, the cause for why some T cells go rogue, why they attack your own tissues or what about those tissues triggers them is not well understood, but it is thought to be citrullinated proteins that occur as a result of infection set the scene, and months or years later T cells see this citrullination and get triggered into attacking.

At the heart of it is money, it is a relatively rare condition, and there is not enough money to justify a mighty push into research, and perversely, the biologics trearment drugs industry is worth $47bn per annum world wide, so in the words of a senior Rheumy, pharmas have no incentive to find a cure when lifelong expensive drug treatments, even with bio similars, is so lucrative. DM me if you are really interested in the research side.

For now, its best to accept and adapt quickly and make the best of it, noting that the drugs we take dampen our immune system, so we have to be sensible about what venues and parties we can go to. Also we can no longer donate blood because of all the drugs we have to take. Stay positive and keep in touch with the folks here, they know what its like and the kindest group you can hope to meet, do take up hobbies that you enjoy but will not be limited by the condition.

Hi @havinghope

I would suggest that if you are looking to change rheumatologist to put your request in writing - both to the rheumatologist and your GP - that's what I did. It takes the emotion out of any discussion and will be put on your health record. My first rheumatologist sounds very much like yours - I don't know why people without compassion and empathy skills go into medicine. My local hospital where my rheumatologist is doesn't have an admissions department so every time I've been admitted it's to a larger hospital - so I've seen a good number of rheumatology consultants - both good and bad. After I put my request in writing - listing my reasons - I was suddenly offered a pain management clinic, a rheumatology physio one-to-one zoom service, rheumatology podiatry and an occupational therapist. So for me I think that approach worked.

I hope you are able to get a better service - after all it is the National Health Service. You are not asking for anything that isn't due to you.

Take care.

Hi @havinghope Re gym - My DIY projects are challenging enough now, so I don’t really need the gym, which saves on membership. I have to save my joints so I still do some walking, but there’s no serious heavy lifting ie 100Kg weights are history!

Now I might potter round with 15Kg bags of sand & concrete or operate my SDS drill/pounder as I try to re-lay my cracked garden path etc, install exterior insulation and design a solar array in case things get really bad!

On research… even if there were a breakthrough today, it would take years to go through the funding—>test—next phase funding—> test stages, so its best to find a good rheumy and make the most of the situation. @stickywicket has the best experience and pragmatic guidance, we’ve been dealt the cards we have to play so its best to adapt as best as we can. Your rheumy should do his best to help you to where you are no longer in great pain.