Newly diagnosed

Welby

I have been suffering with chronic pain for just under a year and the odd ache in my knees/on and off skin issues for about 5 years. I was diagnosed a few days ago, with psoriatic arthritis. I’m 25 years old so when the pain started it was quite a shock and has been an even bigger shock to be diagnosed with this. The diagnoses is obviously still very fresh and I’m struggling to not think about my career, and what I understand to be a life long condition.

I have told my immediate family, who don’t seem to take this as seriously as I am (I understand as they can’t relate to what I’m going through). I do have other support in place (my partner and his family) and they have been very supportive and caring.

I’m writing to this group because I don’t want this diagnosis to consume my life but I’m struggling to not let this happen at the moment. It’s all I’ve been thinking about since Friday, most likely because the pain is still present and getting worse mostly everyday. I haven’t started medication yet (still waiting for the ok from my rheumatologist, that my x-rays and bloods are ok).

others who have the same or similar condition, how long until you felt effect from medication and are you still able to work/live a “normal” healthy life?

Dannii28

Hi @Welby

Welcome to the Online Community Forum, so pleased you have found us, you will find there are lots of resources and information available to you, please feel free to have a look around the website. 

From your post you seem to be struggling with your recent diagnosis, I am sure you will find lots of support on this forum with others going through similar things to yourself.

I have popped a couple of links below for you to have a look through:

https://www.versusarthritis.org/about-arthritis/conditions/psoriatic-arthritis/

https://www.versusarthritis.org/about-arthritis/living-with-arthritis/

We also have a helpline available if you would prefer to speak to someone for some additional support, you can call them free on

0800 5200 520 Call us for free* today (Monday–Friday, 9am–6pm).

The helpline is closed from 12.00 pm the last Friday of every month for training.

Keep in touch and let us know how you are getting on

Dannii (mod)

Arthuritis

@Welby I am so sorry that you have received this diagnosis so young, life can be so unfair. First, don’t despair, there is both hope & life after diagnosis… here’s a bit of my journey.

I was diagnosed in October 2021, although I’d had pains in my feet from time to time a year earlier, swapping running shoes thinking it was just bad shoes, but nothing worked, and my young GP at the time, a locum, figured it out and suggested I get tested. The “tell” was painful feet in the morning and feeling worse after a rest from a run.

Like you I went through the pre-medication blood tests as the immune suppression drugs you get are potent and not risk free. However it takes about 3 months for them to batter your immune system into submission, at which point you start getting pain relief. Prior to that all I could do was wrap my joints in bandages that held frozen gel packs in place, particularly at night, and put them in the freezer in the morning to get pain relief at night, when it was at its worst. I was rightly told to avoid getting dependent on steroids, which have serious side effects of their own, but can help the transition while you wait for the “DMARDs” as they are euphemistically called. (Disease modifying antirheumatic drugs) except they do not modify the disease or the rheumatism, they just whack your immune system so that it no longer has the resources to attack your joints, giving you relief and recovery, but it also makes you vulnerable to infections Covid, flu even shingles. You need double vaccinations of flu, Covid etc, and your NHS record will be updated to flag you up as “clinically vulnerable”, and you receive early alerts about vaccinations, and GPs are quicker to prescribe antivirals or antibiotics if you develop an infection as they know those on the list need them.

Once the immune suppression kicked I began feel normal and except for the 24hrs of nausea after taking the drugs I was ok and back to work.

However I have no family history of RA, and after a year of suffering various infections (I was on the MAX allowed dose of suppression) I got a skin infection that needed a particular type of antibiotic and following successful treatment of that infection my RA symptoms eased off so much that unlike the usual end of week ramping up of joint pain and need for the DMARDs, none of that occurred. A week passed, then 2, then 3, now I am on week 10 without. I did need a couple of extra courses of the antibiotics as the suppression had allowed the bacterium to flourish and really establish itself, and likely caused my RA symptoms (which were serologically confirmed). I have now been referred to a gastroenterologist to check for Crohn’s which can result in RA symptoms if not managed properly, however crucially, it responds to antibiotics which kill off overgrowth of bacteria that are likely causing the inflammation.

@Hairobsessed123 also had symptoms similar to yours, diagnosed with psoriatic arthritis and like me, found her PA went away after treatment with antibiotics for some other infection.

I will try to find the Crohn’s website, which although not your condition, was one of the few places which urged patients and clinicians to carefully investigate the cause of the symptoms as the symptoms may not be the disease, but an indication of something causing the inflammation and it gives a list of things to consider. All too often docs and rheumatologists are quick to assume the symptoms are the disease and will dismiss any attempt to look further, assuming that what they know is all there is to know, however there is ongoing research into other treatable possible causes, so you will need to be assertive and insist (there’s a whole separate discussion on this):

https://www.ucl.ac.uk/inflammation-tissue-repair-fibrosis/academic-experts/mauri-claudia

and

https://ard.bmj.com/content/73/1/263

I suggest you swap notes with @Hairobsessed123 to see if there’s things that might helped you. She has done remarkably well getting off the autoimmune merry go round but we both wish we’d had our serendipitous discovery made sooner and systematically by our clinicians rather than by accident. Her rheumy was much more constructive in treating her new found freedom compared to mine, who simply could not accept that his mental model of how it works could be wrong or that he could be mistaken despite knowing there are researchers in his field looking for exactly that. Prof Tim Spector’s (King’s College) material on gut health and the immune system is also very helpful in understanding how to manage the condition & causes. After reading the UCL research & Tim Spector’s book I understood why avoiding eating beans & gluten avoided flare ups!

Feel free to DM me and do keep in touch. The gel packs can be purchased from Amazon. Sports shops sometimes have them but their pricing can be high. Try running cold water in the shower over the overheated joint, then try taking a cold shower as best as you can. The Scandinavians do this as a ritual and compared to the rest of Europe have much lower levels of inflammation.

During my worst symptoms I had to buy aids like electric can opener, bottle opener, electric bread knife, electric salt pepper & spice mills and change my sink taps to lever type from the old turning type. Also a folding cane to hobble around in, where as just 6 months before I was a gym bunny. Now I am contemplating going back as I don’t need those aids anymore. Hopefully you’ll get through the worst quickly.