psoriatic Arthritis

[beaton]

Is there anyone in Cornwall on this site who suffers from Psoriatic Arthritis?? I would like to find people local to me just to chat to.

[Hidden]

Although I am a fellow sufferer am not in Cornwall, but London. Hope someone replies to you. Having said that am happy to chat if you feel like it. xx

[brit2013 in reply to Hidden]

Also happy to chat but I'm in Kent x

[Hidden]

What about the England/Scottish Border ??

We are all very chatty. I wish you luck I am willing to chat, you may even get someone from Cardiff as well.

All of us are quite a mixed bunch

BOB

[earthwitch]

Phone the NASS (National Ankylosing Spondylitis Society) helpline and ask if they have any groups in your area. PsA is one of the spondyloarthropathies (like ankylosing spondylitis), so you would certainly find other folk who are going through the same as you within NASS groups.

[Hidden in reply to earthwitch]

NASS - never heard of them. I love it. Sounding like I have AS - my doctors are throwing that idea back and forth with my home reumatologist from Mayo Clinic.. I really want answers about this. Going to be googling NASS as soon as I finish this sentence. Than you Earthwitch. I am glad that I looked at this older post. Older posts are teaching me a lot of stuff.

[beaton]

Thank you Georje, Laura, Borderriever and Earthwitch for your replies. I didn't mean to leave you out I'm feeling very isolated at present. My story goes having been diagnosed PsA and under rheumy for three years he discharged me because I couldn't tolerate the meds. he offered. I tried another hospital but they didn't want to know so the only support I have is my gp. I was invited to attend a meeting of NRAS and was hopeful of finding friendship and support. Unfortunately this did not happen. They people were all RA sufferers who didn't understand my being there. Also the group have gone further west,quite a trip especially as I don't drive.

Thanks Earthwitch for recommending NASS,never heard of them so I will look into that.

Love to you all.xxxx

[earthwitch in reply to beaton]

Might be an idea to phone the NASS helpline and ask them to tell you if there are any specialist spondyloarthritis clinics in your area, then try again with the GP to get referred to someone who really understands PsA. Please don't give up on rheumatology treatment this early, as things are constantly changing with treatment options, and you never know, something that will suit you could be right around the corner. My Mum did as you have done, and decided there was nothing more she could try and stopped seeing the rheumatologist some years, and consequently missed out on being offered antitnf treatments when they first came in. If she'd kept even just having a follow up every couple of years, she might have been able to be prescribed those new meds.

[beaton]

P.S. I have just looked up NASS,the nearest group is in Plymouth.nearly 60 miles away and a day trip by bus or train. See what I mean about being isolated??

[earthwitch in reply to beaton]

Did you actually phone the helpline? They may be able to put you in touch with something closer. Also, if you want online support with far more people with PsA (and spondyloarthritis generally), then try either the Spondylitis Association of America or KickAS - both are international forums and have a lot of folk who really understand spondy. Good to stay on this forum too, as this one is mostly british, so its people who understand the UK health system, but for disease and lifestyle management issues, I don't think you can beat SAA.

[Clare-NRAS Partner NRAS]

Hello there. There are two NRAS groups in Cornwall, one in Plymouth and one just launched in Truro area.

The Truro group will be establishing regular meetings commencing in March and the Plymouth group already have their dates set for the year. First meeting for Plymouth for this year is tomorrow. Full details of all group meetings can be found at nras.org.uk/groups. Anyone living with an inflammatory arthritis is more than welcome along at any of the group meetings so while I can't say for sure if there is anyone with PsA attending the issues you all face are so very similar it can still be so helpful for RA, AS, PsA patients to share support and information with each other at these get togethers. If you need more information call 0845 458 3969.

kind regards

Clare

[beaton in reply to Clare-NRAS]

Hi Clare, Thanks for your reply. I do know about the Truro group as I was at the first meeting at Richard Lander school and the meeting at Treliske. Unfortunately this group do not know anything about PsA and wondered why I was there. Also they have moved their meetings out of Truro to Carnon downs. This is nearly twenty miles from me and as I don't drive Carnon downs is almost impossible to get to.

As for Plymouth,Devon. is nearly forty miles away,again transport would be a problem.

Thanks for taking the trouble to reply,regards.

[Janeywom]

I'm from Somerset and my partner has family in Cornwall and we come down from time to time. But happy to chat anytime.

[Lisasones]

Hi I live in Truro and think I have psoriatic arthritis but my Gp refused to discuss it, I told her of my funny toe nails and swollen big toe and finger joint (right hand ring finger only) plus various other joint complaints and she said, can't be psoriatic as that is symmetrical..... (when I had done my research and knew it is both asymmetrical and symmetrical, when you know more than your Gp it's time to leave the room) I later found out that my blood test which she said was normal had asterisks of abnormally high against both the RA tests and another inflammation marker as they were above range... I can't sleep for the neck pain sometimes... and am wary of the pain relief/anti inflammatory melds as I have PA and coeliac so too... And yes, that local Truro branch that recently moved to carnon downs said to me they only discuss RA and have no psa members, no wonder if they keep turning us away! Lol! How far away from Truro are you? I moved here from St Just last year so I know what's it's like being isolated in the Wild West! Xx

[beaton in reply to Lisasones]

Hi Lisa, I live in St. Austell.

I was told by Rheumatology at Treliske that I had PsA some years ago. I went to their clinic for three years and tried different meds. I was intolerant to all of them so was discharged. I now have no help with my arthritis. I'm gluten intolerant too.

I was in on the setting up of the Truro RA group, hoping to get so help but they made it plain that they only wanted to deal with RA and hinted that I lived to far away. Then they moved to Carnon Downs, which did make it impossible for me.

I think moving out of Truro was a bad idea and also feel that this group is very full of their own self importance, which is a shame.

[Hidden in reply to beaton]

Hello

I suffer PSA and the medications seemed to make me quite ill so like beaton I was discharged with my Celebrex and Tramadol, not forgetting Amytryptalene.

So I suppose what it mounts up to is if we cannot take DMARDS they are not interested in us.

i live in as many know up in the wilds of the Scottish Boarder, and the nearest I see on the list is at least 80kms from me so I am all alone in the wilds

BOB

[nomoreheels in reply to Hidden]

The "People near me" is all over the place just now Bob, I have some showing only a few KM's away who I know are much further away & some who I know live near aren't showing so not particularly reliable at the mo. It's still in beta so may have some initial hiccups I believe.

[Hidden in reply to nomoreheels]

Nomoreheels, what does that mean "still in beta" ? and having inital hiccups?.. such interesting words.. I am from the USA and I love your medical language. =)

[nomoreheels in reply to Hidden]

Not medical language Karen, it's relating to how the site works, in this case it's a trial stage before softwear is released, some of us were tasked to try out the format for ease of use prior to release as you see the site now (before you joined the layout was different). It helps to iron out any faults, we report back with how easy it is (or not) to manoeuvre round the site, you're asked for your input, suggest areas which could be improved etc. as a user.

Initial hiccups means that there are still a few teething problems, reported back to the HU team which need adjustment before being released to the rest of the community.

[Hidden in reply to nomoreheels]

I see.. now might be the perfect time to say thank you to all that work so hard on the site. I really like the layout and how easy it is to use this site. =)

[nomoreheels in reply to Hidden]

Oh we don't work on the site, we're members just like you, part of a group who were invited to test it out prior to it going live.

I must admit I was one of the ones who wasn't too keen on some of the changes but since they've tweaked a few things which weren't too clever & added others suggested by the group I've got used to them. It all goes towards having a more user friendly site. This one we're doing now was one suggested by a member & I'm hoping some of the others mentioned & voted for by others will eventually appear in the future to make it even better.

[Hidden in reply to nomoreheels]

Thank you for updating this because I was scratching my head in wonder if you were one that got the site up and running completely - I was just a little put off by it but grateful. Now I fully understand what you meant.

I am reading the posts from way back so I've been a little bit quiet. There is a wealth of information and good stuff on and in them.

I am forming a better questionnaire for my doctor...I have an appointment on Thursday. Now I can stick to the current better with my doctor rather than asking so many in depth that is answered on here....

I really "get" what I am likely to see in my future with this inflammatory disease. I guess that I thought it was about joints only.. I am talking less by far to people who look at me as being a downer - they don't have RA, they want to hear that I am "just fine" and now I can say that to them rather than going on and on about my difficulties because of RA, I can talk to this group about my difficulties..

I figured out that the site here is not really about telling each other what we should and shouldn't do but it's about bouncing off ideas, things that I haven't even thought about that I can bring up in my next doctor appointment. I will never sit with a blank look on my face again when the doctor asks if there are any questions. This site gets the wheels turning for me in the right direction...

I'm no longer saying "Poor me, its the end of my life as I know it"

So you've been here answering questions for eons (lots of time) Many are questions the same after the same for months and months.. and you have answered them for that eternity as if it was the first time that you were ever asked that question... your audience can't realize this unless they go back and read 6 months worth of reply... When I came on board, I didn't know that you ever answered my questions before, that is how fresh your replies are..

and with Twitchy Toes, I always feel like we are two friends sitting down to have an alone chat.. she brings so much of her life into the story to make me feel like she knows without a doubt what I am going through.. I love the atmosphere in chatting with her.. She reminds me of the mother of all... keeping everyone near her with a story that is so relate-able and warm even if it's the truth about an ugly disease.. She reminds me of a hospice worker who is calm and serene enough to calm the worrisome mind and body that sits before or gathers around her...

Not many have that gift - I have yet to meet others or know them better on here to say that they also have great qualities.. you two just came to answer me first. Everyone on here seems to be in the same boat as me and are lovely people that I hope to know some more of their stories.

That may be why I ask such general questions and I read all of their stories from start to finish... I want to see what we all share..

Karen

[nomoreheels in reply to Hidden]

You're right, it's an excellent resource for just getting it out there, to share with people who understand what it's like to live with the disease & associated autoimmune diseases. If I can help a newcomer feel welcome & at more at ease I suppose with my experience then it's worth answering a cry for help or a bit of understanding. The question or post isn't always the same so it stands to reason the answer wouldn't necessarily be the same & no one would want a stock answer would they? Members were so kind to me when I first joined & I'd had the disease some time then like yourself so mostly reaching out as I didn't now anyone else who knew exactly what it's like & as I'm generally well controlled I can pass on that there is light at the end of the tunnel. Thank you for your kind words, not why I choose to be on here & I'm sure Twitchy if she sees your post will thank you also but it's not necessary all the same.

[Hidden in reply to nomoreheels]

Yes heels, I am well on my own up here and like you I thought there was some up here in the local market towns

So I suppose all will be sorted when hiccups have been sorted

All the best BOBx

[nomoreheels in reply to Hidden]

I'm sure it will, guess we'll need to sit it out until it's sorted. x

[beaton in reply to Hidden]

I can't find the reply I sent this morning. Just saying "Hello" to you Bob.xx

[Hidden in reply to beaton]

Hello Beaton.

All the best

BOB

[Lisasones in reply to beaton]

I didn't realise you'd moved away from Truro, it is nice being a bit more central to everything, not that that's helped me with the RA group or even being close to Treliske, my doctor completely flat out refuses any more blood tests or to refer me to a specialist so I'm no further forward than if I was still out in the wilds... It does feel like a singular battle doesn't it - I've had to go down the self care route for my PA and HypoThyroid - and just put up with the PsA... do you have a partner to support you? I was single for quite a few years and that was very debilitating (I wasn't getting enough B12 injections) and really only functioning at about 20% - amazed I kept my job! Xx

[beaton in reply to Lisasones]

Hi Lisa, I didn't move away from Treliske, they discharged me leaving me with no support. At the time I was getting ESA but as I had no up to date medical records I lost my EDA. I tried to get help from Derriford, I took all my notes as proof, but they were no help either.

This was all happening at a difficult time for me. I had resigned from my job because of the pain. Then my hubby got cancer,we moved house and my husband got cancer again. Thankfully he is clear of it now.

I must admit that since getting my thyroid meds. sorted my PsA is tolerable. I've sorted out pain management with my GP and just live each day as it comes.xx

[Hidden in reply to beaton]

I really wish that I could share this story of yours over in "all things pain" because there is another dear person that was left without a plan..

I feel like she is going to have to do her own footwork through all of this stuff...I mean be her own secretary of health.

[Lisasones]

Omg sounds like you've been through the mill, you must have had a lot of stress and worry about your husband too, sounds like your Gp is at least listening to you - and yes, a day at a time is my mantra, no good planning something - my brain might be willing but there's no guarantee my body will be xx

[beaton in reply to Lisasones]

[Cotton79]

Hi beaton, I'm not anywhere near Cornwall I live in Ireland. I also have psoratic arthritis it started 5 years ago. I had a wonderful GP at the time who tried all the DMARDS which had mixed results some I couldnt tolerant die to making me sick others worked for a few weeks and then stopped working, my gp told me to see a private rheumatologist and recommend someone to me. I am now onto my 4th biologic one didn't work at all and the other two I became immune to after 12-18mths. I'm not sure if the same applys in the UK but I was told that as a private patient I would receive better, faster treatment while a public patient wouldn't have the same access to biologic medication as it costs so much. Maybe it would be worth revisiting your GP again and seek a referral to a differant rheumatologist. Wishing you all the best and I hope you get sorted soon. X