Posted Mon 4 Nov 2019 12.06pm by JulsC
I've recently been diagnosed with Psoriatic Arthritis though I didn't have Psoriasis beforehand. I only started to notice it when my finger started to swell up like a sausage and I started to get an itchy scalp.
I was of course referred to the Rheumatology department at the hospital, who started me on Methotrexate. Unfortunately, I've been having a lot of side effects with the drug and my liver isn't doing very well.
The hospital and doctors have for the past 4 months been taking loads of blood and I feel like I'm never away from them. I'm currently off Methotrexate but have advised them that I don't want to go back onto it due to the side effects. They have suggested an injection instead of the tablets but I'm not sure if that will make a difference.
I've been really struggling to come to terms with is diagnoses as I don't have anyone close to me and am worried for the future on how I'm going to manage. I'm having a lot of low moments which leads me to breaking down and shutting myself away from everyone. I have tried to explain this to my friends, family and work but I don't think they really understand what I'm going through.
I sometimes feel like a fraud as I'm still able to get around ok, though do have flareups and am stiff in the mornings and I'm starting to notice that I get very tired by the afternoons at work and by the time I get home I'm shattered so just lay on the sofa.
Does anyone have any advice on how to manage this type of arthritis on a day to day base? Also is there face to face groups that might meet up to just talk about the week that you've had?
Any advise would be greatly appreciated.
Posted Tue 5 Nov 2019 12.27pm by Mac
Easy to understand having the lows, it's one we probably all fall into at times, more times than we like too. You need to get into the positive side, hard to do at times, but I find negativity just makes things worse. I find that being around positive people helps a lot with this, if people start getting negative I just leave, life is too short for that crap.
It's bound to be hard for people to understand what it's like with arthritis, if they haven't went through it. So I don't even worry what they think, it's one of them things I can't control, and would probably add to feeling low, so why put your self through that (imo), you have enough to deal with.
As for managing with PsA, you just have to work with it, it sure ain't going anywhere sadly. Finding things that upset the apple cart will take time, then try to avoid them or keep to a minimum. Hopefully they sort your meds out soon, this will help a lot.
As for tiredness geez this is a tough one, and I find my meds don't help with this, really hard to deal with, sometimes I can cope with the pain better. If you can just rest when tired, if your working I know that ain't practical, but it's all you can do, a five minute nap can work wonders, it does for me.
I have had PsA for year's now and every time I think I have got on top of it, it just proves me wrong.
For meeting people with arthritis, check out www.arthritiscare.org.uk/in-your-area.
Posted Tue 5 Nov 2019 1.28pm by JulsC
Thank you so much for replying to my post. It's been so difficult over the last couple of months and I'm a bit of a worrier so this is just adding to the lows.
I'm trying to do my best not to get so low but it's hard when there's no-one to talk to about it. I went home and cried last night as I was having a really bad flare up and was just feeling so low.
I've got things to look forward to which is helping a bit but it's the day to day stuff that's pulling me down and this not getting on the right drugs isn't helping.
I've just been advised that I need to stay off the methotrexate for another 2 weeks due to my liver results not a great sign. So more blood tests need to be done again.
Have you tried the methotrexate injections or one of the other drugs? I'm curious to find out if one of the other drugs might be a better fit for me rather than methotrexate.
Working full-time doesn't give me much time to cope with the tiredness and unfortunately I can't reduce my hours just yet as I'm the only bread winner! It's tough and normally by the time I get home I'm so shattered that I can't even sleep.
Today is slightly better but my hand is very sore though my job requires me to type. Hopefully in 2 weeks time I'll get better news and start on some drugs that will help.
I'll keep trying to stay strong and hopefully pull myself out of this low mood.
Thank you also for the info on meeting people in my area.
Posted Tue 5 Nov 2019 2.38pm by Mac
I haven't tried the injections, I had been on MTX 20mg for year's then my liver results shot away up into 70's earlier this year. So I too had to stop for a couple of weeks till they got to below 50, I'm back on MTX at 15mg, all seems to be going good with them again. They are talking about adding in sulfasalazine, so have to see how that goes.
Working full time is not a great friend of fatigue, have you talked too your boss (sorry if you are the boss) they might be willing too work with you. If you get a 30 min lunch you could try going for a doze then, might help with the rest of the day. Try to stay in work as long as you can.
Keep battle it out till you get your meds sorted, and after awhile things should start too improve. When you get out of bed in the mornings, sit for a minute or two and focus on good things, I always believed the way you start the day will hold true for the rest of it.
Posted Wed 6 Nov 2019 7.21am by wendyloish
I had a fatigue problem too. Have you had your thyroid function tested?
Posted Wed 6 Nov 2019 8.24am by JulsC
No not had that tested, I'll mention it the next time to my doctor.
Thank you so much for this.