Hi Guys I’m Jay, from Wales, Uk. Recently been told I have PSA. I have joined because I’m worried, I am or was in good physical health. Always in Gym as well as my job also being physical with alot of Lifting. I’ve had small patches of psoriasis since I was a child but its hardly visible. Around 5 years ago it started to appear under my nails and now since January the pain has gotten worse and worse. I thought it was sciatica as the pain was in my hamstrings but now it’s in my wrists, shoulders, feet and even my toes sometimes.
It’s horrendous in the morning and I’ve had days recently where I’ve struggled to get out of bed or even open a coffee jar before I eventually become more active and it subsides a bit. The more active I am, the less the pain seems to usually be, but some occasions I struggle to walk after half hour of stopping.
I’m really worried I will have to give up my job if things dont subside and I am devastated at the thought of being on Medication the rest of my life to deal with this. It’s a big kick in the teeth for somebody in good physical condition when all of a sudden you can’t do what you’re usually able to.
The Doctor has given me Naproxen and I am currently on waiting list to see a specialist. Any advice would be greatly appreciated as I just don’t know what to expect & in my mind I am thinking the worst.
Welcome JC! This is likely the toughest stretch, also known as the gap. You’re diagnosed but not yet fully treated, and you aren’t on any sort of disease modifying medication. The naproxen may help a bit, but it won’t control the disease. The sooner that you can start treatment the sooner you’ll be able to get better control. It may not be perfect, but it will get better than where you are now.
Hi thanks for the reply, yeah its struggle atm I always feel tired too and does it have any effect on immune system? as Ive had loads of colds this year already.
Hi, JC and welcome. Fatigue -- that dead-tired-lead-in-your-veins exhaustion -- is all part of the PsA picture. For me, it and the depression were the hardest things to take. There's loads of stuff in our Newbies' Guide, and here's the piece about fatigue: http://discussion.livingwithpsoriaticarthritis.org/forum/topics/6339595:To...
As for the immune system, this disease has _everything_ to do with the immune system. You and I and everyone here has an immune system that has mistaken our skin and joints for an enemy, and it has gone on an out of control search and destroy mission. And that, after all we have done for it. Betrayal!
We're glad that you found us, JC, and we hope you're happy to be here too. Don't be shy! We have great conversations here: join in and ask questions.
Thank you Seenie, yeah I’ve had issues with Fatigue and depression, seems PSA is possibly the reason behind this now I know the issue and some potential symptoms.
It's a huge kick in the teeth, indeed it is. You can probably see all your dreams flying right out the window. As Stoney says, we call it The Gap here & it's a difficult place in which to feel optimistic. And of course, before diagnosis and the gap there's that other phase where you just feel more and more grotty and don't even know why. And that grinds you down too. I was so ground down I'm not sure if I cared what happened to me or not, I was almost a zombie.
I wouldn't say all of that if it was the end of the story, it'd be too depressing. But in fact I think you really have a great chance of keeping your life on track. The physical fitness you have is surely going to help and getting a diagnosis opens the door to some potentially very effective drugs. Nobody wants to take medication, but some of the things available for PsA can make a tremendous difference. If you need any advice about 'navigating' the NHS then all us Brits here have plenty of experience to share. A good rheumatologist can be a godsend so if the one you see isn't top notch, there will be plenty of recommendations available, though I hope you do get referred to a good & proactive rheumy. Any idea how long you'll have to wait?
Thanks for the reply x one thing I’m really struggling with is my wrists and I can’t seem to shake a cold, I’ve had it for a few months now. How long does naproxen take to work properly?
Others might have different experiences, but I found that NSAIDs (I was given Ibuprofen rather than Naproxen by my GP, but it's a NSAID too) either work immediately or just don't cut it. These days, with Humira and Methotrexate as my regular treatment, I find that one Naproxen takes the edge off any pain within hours. But back in the days when things were a lot tougher, Ibuprofen didn't help at all. Wish I could say different!
Are you eating super-well? That's another thing that really helps with PsA, in addition to staying active. Fresh veg, oily fish, not too much sugar etc. might just help you fight off that cold if you're not doing that already. Plenty of sleep too, if poss. This is probably not the time to defy the disease too much, the kinder you can be to yourself at this stage, the better.
One of my wrists became pretty useless before I started treatment but it's strong now, if just a bit hurty at times. You could ask your GP about a steroid injection .... though not sure if all GPs would consider that. But asking, persisting and generally pushing for help is par for the course.
JC said:
Thanks for the reply x one thing I'm really struggling with is my wrists and I can't seem to shake a cold, I've had it for a few months now. How long does naproxen take to work properly?
I haven’t been eating great of late tbh, had a sinus infection the last few months and my sleep is poor due to a new family edition lol. I will apeak to my doc about Steroid injection. She gave me one in the elbow last year. My fatigue is a mix of both atm, I am hoping I don’t have to wait too long to see a specialist as I’m struggling terribly today, have a job getting down and up off the floor when changing the little dudes.
Sounds like congratulations are in order! But oh my, what a tough time. I'd say push for an appointment ASAP & don't be afraid to really lay it on the line with regard to your family responsibilities and the need to keep going at work. Great that your GP will administer steroid injections. One in the backside might well give all over respite, or in wrist would obviously address that area specifically.
JC said:
I haven't been eating great of late tbh, had a sinus infection the last few months and my sleep is poor due to a new family edition lol. I will apeak to my doc about Steroid injection. She gave me one in the elbow last year. My fatigue is a mix of both atm, I am hoping I don't have to wait too long to see a specialist as I'm struggling terribly today, have a job getting down and up off the floor when changing the little dudes.
Thanks alot, yeah it seems to be getting gradually worse. Ironically I now have hardly any visible skin psoriasis and its practically gone from under my nails. The morning is the toughest, when I’m in work its usually at it’s least due to being on the go
It's great that you cope okay once you get going and that is how PsA is .... it's inactivity that leads to the worst pain & stiffness as a general rule. But maybe don't be too quick to tell your doctor that because they surely have a responsibility to take a person's personal circumstances into account and to help keep us in work. So in your situation I'd tell any doctor who would listen that work was very challenging! Actually I don't suppose that would actually be a lie. And of course that is then just one of a whole number of reasons why you need a rheumy appointment as quickly as possible.
JC said:
Thanks alot, yeah it seems to be getting gradually worse. Ironically I now have hardly any visible skin psoriasis and its practically gone from under my nails. The morning is the toughest, when I'm in work its usually at it's least due to being on the go
They have me fast tracked and down as Urgent. Work can still be a struggle but you’re right that if you play the symptoms down they tend not to do alot. It varies from day to day, sometimes its that bad I have to get up out of bed as I can’t handle being led there in pain.
JC that's great you're marked up for an urgent consult. Several of us in UK needed to push forward even faster than that and paid to see a rheumatologist privately in the early days. Do you perhaps have private medical insurance with your job? If not and you're able to self-fund it's possibly something you could consider if the wait gets too long. Sybil's idea of asking your GP for a depo-medrone steroid shot (sorry, it does have to go in the bum or thereabouts) is great, it can make a huge difference while you're waiting to get started on some more effective treatment.
Keep talking to us and asking questions, we'll get you through 'the gap'. Best wishes, JulesG
Hi JC, and welcome! Ugh, your story brings back some horrid memories and brings tears to my eyes. I remember feeling just like you - like the Tin Man from Wizard of Oz when he didn't have his oil can after sitting around for just a short time--everything locked up and it was very painful to move. I was so scared of the meds and never wanted to become dependent on any of them to make me feel well. After declining Sulfasalazine and Methotrexate, I finally agreed to go on Enbrel (after 6 years of being diagnosed). My pain came on gradually, so the first years weren't too bad with just the nail deformities, pain in my fingers and crushing fatigue but with every passing season more pain until it got so bad by late 2013 I was beside myself and knew something had to be done. I started Enbrel July 3, 2014 and I'm doing extremely well on it!
I'm just telling you this to show you that there is a brighter future and hopefully the meds will help and eventually you'll get on a biologic that works well for you!
Oh yeah, I still have pain--the long stretch of being diagnosed and not treated wasn't good for my back and feet, and now my feet especially give me some major pain. But it's OA pain, secondary to the PsA, and it can be managed with good shoes and ibuprofen, etc. Its nothing like the PsA pain, which made my entire body feel sick.
So, hang in there--better days are ahead! So sad for you newbies struggling with knowing you'll be fighting this forever--it is depressing!!!! Glad you found this place--the people here are so caring and will be here for you every step of the way! ☺
Hi Grandma and Jules, thanks so much for the replies. It’s lovely to hear some reassurance that things will get better. I’ve been thinking the worst as I don’t know a great deal about PSA and how things currently are I was coming to the conclusion I’d be incapacitated by my 40s and unable to work a physical job. I really am hopeful that won’t be the case now as that’s what I’m best at doing. Regarding the Specialist my doc said 6 to 8 weeks but I just hope the pain doesn’t get any worse.
I went through a stage of taking vast amounts of Zapain Tablets and the pain was that bad one week I went through a whole 100 tab Box to help me sleep and get through work, which is dangerous and irresponsible.
Non-medicinal suggestions for dealing with the Tin Man phase (especially in the mornings!)
1) Heated blanket. I used to set an alarm 60 minutes before getting up in the morning to turn on my heated blanket. I'd let it warm my body up as I dozed for another hour or so. This helped my mobility immensely and made it much less painful to start the day. Heating pads are also helpful.
2) Epsom salt baths or soaking salts. If you have a bath at home this may help. Hot baths are not great for the skin, but they can make joints and sinuses feel a lot better, especially with salts. You can get a big bag of epsom salts for cheap at a grocery store.
3) Non-caffeinated warm beverages, even warm water in the summer. This has helped stiffness in my neck, chest, and upper back and improves hydration which can help with swelling and inflammation.
Hi, North
Thanks for that great advice, I noticed a really Hot shower helps a bit in the mornings. When you mention Sinuses does PSA affect them? as I’ve had Sinusitis for a few months almost now.
JC, just something else which you could ask your GP about in the meantime to help you with nightime pain and sleep issues is low dose amitriptylene.
Lots of people here are on it (so many that we often forget to mention it), I've taken it on and off ever since diagnosis. It really does help you get a good nights sleep by making you drowsy, relaxing your muscles and easing nerve pain. In reality it helps you get to sleep and stay asleep when the stiffness and pain sets in. But at the dose we're talking about (10 - 20mg) it doesn't leave you spaced out the next day. It's not addictive or anything like that either ... and you can sometimes get some really whacky dreams.
Since picking up the additional diagnosis of fibromyalgia I've been taking a slightly higher dose and taking it every night and again, it's been a game changer :-)