Posted Tue 14 Jan 2020 7.40pm by Everydaynormalguy
Hi all I hope someone can help me please , I will try keep a long story short (ish) but iv been suffering with joint pain due to psa for about 6 years , I was working full time and nobody looked into the cause of my pain , every time I managed to get time off work to see a gp they just give me painkillers and that was that , each one put it down to wear and tear even though I’m only 30 lol. I recently had to quit my job as it was getting too hard for me to deal with the pain and exhaustion .I recently see a rheumatologist and he says there is 99.9% chance I have psoriatic arthritis and that would explain how iv been feeling for last couple few years . Im just wondering if some people can share their symptoms with me ? Because My fingers and certain joints swell up and hurt after using them , also my hips after walking and using them are really painful and I struggle to walk , but then some things can hurt after inactivity or randomly ? Is this normal ? As I’m struggling to find the right balance , I understand exercise is good but after walking my hips are really painful , i thought psa pain was worse with inactivity ?
Posted Wed 15 Jan 2020 9.27am by PsA@32
I can certainly relate to this. I am now 35 and was suffering the same symptoms as you. Getting up in the mornings was a real struggle and even getting to the office from the car was a feat! It took a while to be referred to a rheumatologist who diagnosed PsA and proceed to try me on a number of treatments (methotrexate etc) which didn't really make a difference. I was finally given a biological treatment called Adalimumab and this has changed my life to be honest. I can do things and move around. I still have some joint pain and flare ups and get exhaustion - but at least I can get out of bed!
Work is an issue - before I was diagnosed I was taking time off, even signed off by the GP for a month. This just leads to feelings of guilt and that I am a burden to the work place. I am currently contracting and looking to what my next move will be this year. i have considered applying for PIP payments to help me with where I struggle.
Keep the faith, there are good treatments out there, its just playing the game to see what works for you. The fact you have been referred to the rheumatologist is a good and important step and will mean you are on the right track to managing the condition.
Posted Thu 23 Jan 2020 8.25pm by Mac
I find the bike good exercise, give it a whirl see if it helps.
Posted Thu 6 Feb 2020 7.37pm by Jeanette
Hi I have just been diagnosed with PSA and psoriasis. I’ve been given Methotrexate to take once a week and folic acid. I’ve been told I will need taken every 2 weeks and will need to see my specialist every 3 months. I’m feeling so tired all the time and my joints are so painful. Would you say this is normal and does it get any better? I’m also thinking about getting in touch with pips, is anyone on pips because of this condition?
Posted Sat 8 Feb 2020 12.38pm by Mac
I take it you meant bloods taken every two weeks? If that's right then yes this is normal, and after a while if every thing is ticking a long nicely they will look bloods every 3 months.
It will take a while for the MTX to work, could take a couple of months sadly, but things will get better with the MTX. Believe me the MTX will help I was on it for year's sadly had to come of it because of my liver :(, I would go back on it in the morning if I could.
As for PiPs contact your local Citizens Advice center, they will help you out with that.
Posted Sun 9 Feb 2020 3.48pm by Jeanette
Thank you, yes sorry I did mean my bloods. It’s the first day of taking MTX but I’m glad to hear it does get better. I’m sorry to hear you can’t take them anymore.
Posted Fri 21 Feb 2020 9.44am by G
Hi I was diagnosed with PSA in May 2018. Initially it was really well-controlled with Sulfasalazine and Celecoxib, with very few symptoms. I then started getting pain and swelling again in my fingers and I was put on Methatrexate. However, I did not tolerate that well...it actually made my pain, swelling and psoriasis worse. The rheumatologist then took me off the methotrexate and increased my sulfasalazine. It helped but not completely. Since November 2019 I have been experiencing much more flares. I think this is partially due to stress at my work. I have been to see occupational health who recommended shorter working days. My manager has done nothing to implement this and subsequently I had a massive flare up 2 weeks ago and was signed off work for 2 weeks. I was given a steroid injection which helped somewhat. I was told that I will most likely be put on a biologic medication at my next appointment, but that is not for a month yet. I’m due back at work on Monday but am terrified that I will not be able to cope with the long hours (13 hour shifts). Also, my workplace does not have parking available so it means going out to move my car up to 4x per day due to local parking restrictions. I will definitely struggle to walk to my car so many times. I have woken up this morning in such pain in my sacro- iliac joints, I’m considering getting some gutter/forearm crutches. I am an occupational therapist so I would not be able to use crutches at work. Help! Does anybody have any suggestions that may help me?
Posted Sat 22 Feb 2020 11.13pm by Debsgil71 (edited Sat 22 Feb 2020 11.14pm by Debsgil71)
Well I'm 48 and because of a really serious staph infection 3 yrs ago I ended up in Hospital with sepsis, a collapsed lung, and neutropenia. Needless to say my psoriasis and psa
went into overdrive, initially on aprimelast because of the severity of the infection but got medically discharged from the NHS (after 27yrs ) my rheumatologist wanted me changed to ustikinamub for my joints but dermatologist took over a year to decide to go ahead been on ustikinamub for 3mths and skin is settling but my joints are agony, starting to get swelling in my goid knee, and I am in pain all the time , I'm so fed up with this blasted disease but I'm going to keep going , heartfelt love to all you other warriors x
Posted Sun 23 Feb 2020 7.24pm by Mac
Good too hear that your getting your psoriasis settled down. Hopefully won't be too much longer till they get those pesky joints under control.
Look on the bright side the sore joints slow ya down so you don't rush about every day :).
Posted Fri 6 Mar 2020 6pm by Everydaynormalguy
Hi people ,
Thanks for replies and advice just a little updat at the minute , I recently had my 2nd rheumatologist appointment with a different consultant and he said it was psoriatic arthritis and wanted to start treatment , I went to see nurse yesterday in order to start treatment but she said because the steroid injection didn’t work very well so the tablets won’t work , and to wait until my next appointment at rheumatologist in 6 months time , I’m currently on no medication so I’m confused as to why she they would let me go in for appointment just to start we are going to start treatment yet , could this be because of the corona virus and they are waiting to see how things pan out before starting somebody on dmards ? I’m confused to the steroid and sulphasalazine link the nurse used as a reason , the rheumatologist seemed adamant I was starting on this medication last time I see him , sorry for the late reply , have a lot going on recently lol
Posted Fri 6 Mar 2020 6.15pm by Everydaynormalguy
Posted Fri 6 Mar 2020 6.43pm by G
That does not sound right to me at all. In my experience, steroid injections either work or they don’t.. However, this had nothing to do with whether the medication would work. The day I was diagnosed with psa I was prescribed medication by the rheumatologist. I also had a steroid injection the same day because he told me that the medication would not kick in for a few weeks. Since then I have had steroid injections alongside my medication, during flare ups. I have had 5 altogether and 2 of them didn’t work.
My rheumatologist told me that psoriatic arthritis needs treating otherwise there is a chance you may end up with permanently deformed joints.
I would get back in touch with the rheumatologist, maybe through your GP if you don’t have contact details for them? I think the nurse must have made a mistake. Surely you can’t go another six months without any medication.
Posted Fri 6 Mar 2020 8.09pm by Mac
It doesn't sound right too me also Everydaynormalguy. So your consultant put you on medication and your nurse said the consultant was wrong, and you would have too go back for another appointment with the consultant?
Why is the nurse sorting your meds out, did your consultant not write you a script for your meds. The nurse should only be doing your bloods.
If this is true the nurse has some set of ba**s over writing the consultant lol.
What meds did the consultant prescribe.
Posted Fri 6 Mar 2020 8.32pm by Everydaynormalguy
Yeah I see what you mean , I only had the steroid injection once and I didn’t notice too much difference ,it’s hard to tell if it helped , she said if the steroid didn’t work then the sulphasalazine won’t work ,and that the rheumatologist only said to start sulphasalazine if steroid worked , which baffled me to be honest , it’s been over two years since my first rheumatologist said he was 99,9% I had psoriatic arthritis and haven’t been treated , so maybe they think iv gone two years without medication I can go 6 months longer , but yeah I’m slightly baffled at the minute lol
Posted Fri 6 Mar 2020 8.40pm by Everydaynormalguy
Sorry I replied before I read all replies , lol . The rheumatologist said he wanted to start me on sulphasalazine, he got the nurse to give me a steroid injection there and then and then wrote out a form for my meds , and said you will get an appointment with the nurse led rheumatology clinic to start your meds in a few weeks . I went to the appointment yesterday to get my meds and the nurse told me the rheumatologist only said to start me on sulphasalazine if the steroid injection worked , but I said it didn’t seem to work , so she said the sulphasalazine probably wouldn’t work either , and to not start them just yet and wait for my follow up appointment with rheumatologist which is in 6 months time to see what he wants to do, but he wanted me to take that , that’s why he filled in the form and told me to give it to reception lol
Posted Sat 7 Mar 2020 4.21pm by Mac
Ah right get you now Everydaynormalguy.
As for the steroid injection, I take it that you get this in the back side. If so I don't know about other's but your mileage can vary with it, there's times I get it and it's great, and then other times not so good, same goes for the length of time it lasts.
Strange the way they are handling it, you would have thought they would have put you on Sulfasalazine and let time answer the question of whether it worked or not.
Posted Sat 7 Mar 2020 5.19pm by Everydaynormalguy
, yes that is where it went lol and to be honest i think I aggravated it somehow because my whole leg and hip on the side which I had the injection on seemed to hurt 10 times worse for a few hours .did you notice any pain like that after the injection ? maybe that was because it was the first time iv had a big needle in my backside though lol . Do you Think it’s worthwhile contacting the nurse to see about trying the injection again ? I really need something to help so I can try get back to work . At the minute small daily tasks are getting a struggle so working 40 hours a week again seem a long shot , thanks for your reply
Posted Sat 7 Mar 2020 8.10pm by Mac
Any time I have got it has went well thankfully, seems abit strange that it caused that sort of aggravation. It might not do any harm just mentioning that to your consultant or nurse next time you see them. Your only allowed three in a year sadly.
I feel your pain (no pun intended) on doing the daily tasks, can get you down when you can't accomplish what you set out too do.