Psoriatic Arthritis

MarkM21

Hello.

I’ve recently been diagnosed with psoriatic arthritis and I’m finding some things hard. Hoping just putting this down in writing generates some responses of similar experiences/potential tips/coping mechanisms!

I’m an 35 year old male and was diagnosed 4 months ago. Thing I’m struggling with most is methotrexate and the side effects. I take folic acid everyday alongside it, but I still feel sick pretty much everyday. Anyone else had this? And if so, what steps did you take? What’s the ‘best’ type of diet? I seem to feel better ish with my joints but feel like I’ve traded it for feeling generally unwell(but not absolutely unwell) on a regular basis. I did expect this, but will this stay the same while I take methotrexate or should it get better as my body adapts?

I also really struggle sleeping. I feel tired quite a lot especially after work but when it comes to the night time I struggle getting to sleep and then wake up regularly when I do get to sleep! Anyone else have a similar experience? And if so, anything that seems to work to help this?

Last question (for now at least!), are there any therapy/counselling avenues that people have explored to cope with the diagnosis? I’m generally a fit and healthy 35 year old and the diagnosis is probably taking its toll mentally more than physically. I asked my rheumatologist nurse for support and she advised me to see the doctor, but then also told me I’ll likely be offered anti-depressants. Not something I particularly fancy! It’s not depression, it’s more just fears and anxieties of the diagnosis and the fact that it seems to be my only topic of conversation at the moment. So would be great if anyone could recommend anything which they feel has helped.

Thank you for any suggestions/help 🙂

Arciere

Hi there

I also have PsA and am in the same sort of age bracket as you. I’m sorry to hear about your diagnosis - I hope it will get better for you - there is help available.

Regarding Methotrexate - I personally couldn’t bear the side affects of this drug, It made me feel sort of car sick and also very emotional. I was switched to Sulfasalazine which I didn’t feel the benefits from. I was then moved to Yulfltma which is working at the moment with little to no side affects, save for feeling tired in the few days after taking it. There seems to be a range of medication for RA so if it’s not right, for you my advice is to discuss and ask for a change with your Consultant.

Regarding sleep. I think fatigue is the worse part about this disease. I also found it hard to sleep and usually did not feel refreshed upon waking - this contributed to a poor mental state (you know - just totally exhausted). The only thing that worked for me here was trying to reduce flare ups of fatigue and stiffness which I will comment on next.

I did participate in some CBT last year for something else and we did spend some time working through chronic pain - so yes, there are CBT pathways for pain - I was very sceptical about talking therapy but on reflection it kind of helped. I know how you feel re mind set - tiredness plays a huge part in this - in my opinion. I quite like Stephen Fry’s approach to Mindset; its like the weather, very real, sometimes stormy and raining, but it will be sunny one day - so look forward to that. I did take some time out of work - which helped also.

You mention diet. I spent ages and became quite frustrated looking for a pick me up - anything that would sort out my fatigue and exhaustion, What I’ve learned is that by removing food groups rather than adding, I actually felt a lot better. I need to add a disclaimer which is that my health may actually be the result of the right medication and distancing myself from a stressful situation but I feel great for it. In a nutshell I have stopped consuming; gluten (so wheat), artificial sweetener and the deadly night shade veg. I also try to keep a lid on the amount of “ose” I consume - so sugars et al (glucose, fructose). I also try to stay hydrated - but find this quite hard ! I learnt this from RA cook books. There are loads on Amazon.

The only other thing I found helpful were oral steroids Prednisolene? When the DMARDs weren’t working. That and staying warm!

Hope this helps as a starter for 10 - there are lots of people on here with PsA so keep asking questions or sharing frustrations if it helps. I’m confident you will get it under control.

PJoanne

Hello @MarkM21

Welcome to the forum.

Here is some general information from the main VA website that might be interesting to you :

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

@Arciere has some great advice for you!

best Joanne

Sagittarius

I recently read that Vitamin D, which is a hormone not a vitamin, calms an overactive immune system and as PA and RA are autoimmune conditions you could try supplementing with a good quality one. I started taking 3000 iu D3 with added K2 a couple of years before Covid to protect my bones but a couple of months later noticed that the psoriasis on the palms of my hands had completely healed but didn't correlate this with D3 until I read some time later that eczema/psoriasis can be a sign of vitD deficiency. I now take 5000 iu with added K2 and magnesium from a UK company called DNA (Do Not Age). It's a good quality one and affordable. It must have added K2 (in the /"trans" form or a mixture of trans and CIS, which mine is as I have asked).

You may want to try it at 5000 iu (which is the recommended upper limit) for a couple of months but I have read about people taking 10,000 iu with great benefits. I urged my niece to start taking VitD to protect her from viruses as she has an autoimmune condition like Chron's but not as they can't diagnose it. She takes it in the spray form from Boots (3000 IUs I think) as her gut is clearly damaged and capsules would probably not get absorbed as efficiently. She doesn't have as many flare-ups now (which has baffled her consultant) but she does take her medication when she feels one coming on as her condition is quite debilitating. I think she needs to take a higher dose and also a complete change of diet. You may also want to take a good probiotic like kefir after each meal which might help also. Hope this helps and I wish you the very best of luck.

Arciere

I second the Vitamin D - totally forgot about that, it’s actually on my prescription - I use the mouth spray one.

jamieA

I think you might want to check your vitamin D intake - the NHS recommends that the maximum you take is 4000 IU and that the normal daily intake should be 400 IU. I've been diagnosed with vitamin D levels less than half what they should be and I'm on 1000 IU on prescription. I have PsA and over the last 4 years I've been diagnosed with low levels of other vitamins including B12 leading to anaemia. A couple of medics have said it might be due to the PsA or the drugs to treat the condition. Specifically I was told that when I was on NSAIDs and also taking Omeprazole that that might be causing vitamins from food not to be absorbed.