....trying to stay positive but I'm in so much pain I could cry! Psoriatic arthritis :(

[Icantstopeatinglol]

....just that really, so fed up of my joints hurting when I've not done much at all and now my skin is bad too.
On 2nd wk of sulfasalazine and hoping it gets better :((

Sorry you are feeling down with the pain. Hope it eases for you soon. X

bump.....ended up in a&e after a reaction to the new meds so have now stopped these and waiting for blood test results.

Oh no, you poor thing :-(

I think there are some more PA sufferers, I've seen a few threads, I'll go and look for them, maybe someone on there can give you some more advice x

www.mumsnet.com/Talk/life_limiting_illness/a1654561-Psoriatic-arthritis

Thank you so much birds, I'll have a look at that link now xx

I don't know where you are or what your weather is like, but if you can bear to bare, sunlight is good for psoriasis. My mum has psoriatic arthritis and has been given sun bed treatments in the past.

Thanks korma, I'm ringing consultants secretary tomorrow to see if I can get in to see him Wednesday. If not I have an appointment for Saturday anyway.
Not sure if it was a reaction to the meds or photosensitivety after being out in the sun but my temp went a bit haywire and I now have glands up on one side of my neck so think I may need to try something different.
I'm only on wk 2 which isn't great! Feel terrible, aches and pains everywhere and can hardly move!
I'm still trying to be positive and think this is only short term til we get meds sorted but its still upsetting.
A&E were great though, they're totally under appreciated! X

Thanks mikkii, yea light treatment has been great for me in the past but these meds have possibly made my skin sensitive which may be part of the problem too.

I am fortunate that my doctor has found the right combo for me. Took a few attempts but we got there. I also find taking Panadol Joint brilliant. It lasts 8 hours and means I can have a day with no pain.

I eat plain white yoghurt to deal with any stomach pains.

Hang in there, you will find the right combination.

Hi, I've got terrible psoriasis, was 98% covered, juice fasted for one month and it virtually cleared up....one year on, it's come back plus I've got terrible joint pains too, very scared this might be PA...if you can stomach juicing, it really helped me and gave me an enormous boost in every way.

It's a horrible disease.

I went to a flotation tank the other way and the joint pain eased considerably

Hi

My husband has psoriatic arthrithis, and I understand everything your going through. He had to stop the sulfasalazine, as he has getting really severe nausea. It is a horrible drug, and it wasn't helping his pain any.

He is waiting for the biologic injections at the moment and he was on steroid injections every month, but he has had to stop these as the consultant said he had had too many .

So to cope in the meantime he is getting acupunture done and it is the first thing that has brought him relief in years. He is having to pay and is getting it done twice a week, and they did say they wouldn't be able to take all the pain away, but he can move about a lot easier than he could.

Keep coming back here for a chat as I think it helps to know there are a lot of people dealing with this, and I hope you get some relief soon

Thanks isleangel, it's really getting me down now as its hard to explain to others how much pain I'm in. I've been on sulfasalazine for 1.5wks and its halved my white blood count which is prob why I feel so worn out. I've got large swollen glands on one side of my neck which you can see easily. I've took today off work as I physically have no energy and feel exhausted. I also feel like my dh is running out of patience with me which is very upsetting as I thought of all the people he should be supporting me but I just feel guilty for being poorly.
On top of all that I have no one to direct my anger at as its my body not working properly!
Hopefully the consultant can give me some better news tomorrow fingers crossed!

Have you been offered any steroid injections?

I get these at times when my PA flares up. It took a while for my meds to settle down, but mostly I am oky these days. I get some twinges and pains after doing anything excessive or more out of my norm, and only very rarely have big flare ups.

:( Hope you can get it sorted

Not yet, I've had some before years ago. The consultant was waiting to see how my body reacts to the sulfasalazine first I think. I'm in pain all day and feel like even the etodolac isn't really touching it now so going to mention that too.
The drs at a&e told me to stop the sulfasalazine as I've had a reaction so I'm hoping the consultant offers me something else tomorrow. I feel desperate! I also feel constantly guilty about being bad, like I've let people down :(

Oh I really do feel for you. I must admit that when DH was diagnosed and was so bad there was a part of me that was just angry that he had got it when he was only 36, and we have 2 young boys and I felt and still feel so helpless sometimes. It used to be when DH told me he was really bad, I just got to the point where I didn't know what to say to make it better, and I think sometimes that it got to the point where he though I didn't care, when actually I just hated the fact that he was in agony and I could do nothing about it, so maybe your DH feels some of that to.

Now I have got to the point where we both know it's going to be rough, and it caused a lot of problems with his work, and we are just taking one day at a time and if he gets through it that's great and if he's in pain we deal with it and accept it. I have also told him that if he needs to come out of work, I will support his decision and I think that also helps. Its really hard for him to do this as well, as he was normally working round the house all the time and is not used to sitting down and resting.

He also gets so physically tired and drained and he just has to accept that he will have to pace himself and rest. Talk to the consultant and I hope you can sort something out.

I also have psoriatic arthritis. the best thing I have used to deal with it has been Pilates. In fact it has radically changed things for the better. I have been having 1-1 studio sessions since sept. Expensive, but worth it. My pain is much less and I have something to trust if I'm having a flare up, although even the flare ups have been less intense. I have to try and practise in between sessions. I hadn't got to the stage where I was taking anything but anti inflammatories but was taking them every day. I don't need any now. I know everyone is different but it may be worth a try, it's a good investment in yourself and your health anyway.
Much sympathy as it's rotten being in constant pain and when the meds have side effects too(I went through countless different anti inflamms).
think the Pilates works as it works through your bodies fascia, which is a web of connective tissue that is all over your body. Good luck.

Thanks oola, I'm actually booked in for a barre concept class and hoping to start Pilates too. I'm over the moon you've said it's helped you cos I was hoping it would help me too cos I do feel like I need a good stretch alot of the time!
I do hope it helps my arthritis, feel like I'm a bit of a couch potato at the minute but I'm a bit stuck cos my feet are so sore.
I'm looking forward to it now :)

I know what you mean, I spent sooo much time on the sofa in pain. Every time I tried to exercise I would hurt myself and be set back. Soo frustrating. The 1 - 1 Pilates gave me a safe way to test limits. It helps that I have a really fantastic teacher who I now really trust. But it's also given me back some trust and confidence in my own body. So when the disease appears in a new place (hand or foot or wherever) I feel I can tackle it. It really has changed things for me. I always have pain in my low back, and now I have ways to help release that a bit. It has been tough though, at times the progress has led me to some difficult places, but it still always feels like progress rather than set back. It's also pretty enjoyable to do. Hope you get on with it.

I might look into the 1-1 Pilates sessions as I'm sure the place I'm looking to go does do that. It is very frustrating as I've always been active and like to exercise but currently struggling to find something that suits me. Swimming is good but my poor skin is so bad at the minute I don't have the confidence to put on a swimming costume :(
Think I will ring the studio tomorrow and see if I can get booked in for a 1-1 session.
Thank you oola! :)

Just make sure you find a really good teacher and trust your instincts on that. There are many leisure centre mat classes and in my experience these are not so good. Wrt skin, I managed to get referred for light treatment which cleared mine in 6 weeks and it stayed clear for over a year. Is back now but not as bad and I live too far from a hospital now for this to be a practical option again unfortunately.

Thanks oola, just rang and left a msg at a studio that just does yoga, Pilates etc so fingers crossed it helps. Seen consultant today too and they're starting me on methotrexate soon.
God what I'd give to be normal again ha! :)