Date: 28.03.2010
From: Wendy Burnett
|
Subject: New to this forum.
Hello my name is Wendy,I have had psoriatic arthiritis for about seven years now,I have just started etanercept as well as taking methatrexate and the usual painkillers would like to share experiences with other sufferers.
|
Date: 28.03.2010
From: Verity
|
Subject: Re: New to this forum.
Hey Wendy! I have RA and find this forum invaluable. Where abouts does it affect you? I have it everywhere, from jaw to toes. The girls in the forum (and the occasional guy) are all wonderful people! Really kind and helpful. Great place to have a bloody good whinge lol Take care xx
|
Date: 28.03.2010
From: Kirstine
|
Subject: Re: New to this forum.
Hi, im new to this forum too and have been finding it a fantastic source of support sine recently being diagnosed with RA. Im on MTX, neproxin and pain killers. How do you find the side effects from your meds? Ive just started on he mtx and already have a mouth ulcer and get occasional sickness and tummy upset. Oh and tiredness like ive never experienced before but not sure if thats th RA or meds. X
|
Date: 28.03.2010
From: Verity
|
Subject: Re: New to this forum.
Hey Kirstine, I think the MTX is the culprit for most of the tiredness although the RA is prob still wearin you out too! Ive been takin MTX for about 7 months now and although my side effects ahd slowed right down its not working anymore : ( Felt like s**t for the last few months and my bloods show the same damn it! Should be strtin on etanercept in a couple of weeks. ive heard mixed reviews but mainly good. How much MTX you takin? xx
|
Date: 28.03.2010
From: Kirstine
|
Subject: Re: New to this forum.
Ive got the 2.5mg tablets and last week took 4 tablets (10mg) and this week took 12.5mg. Ive been told to increase by one tablet each week untill i get to 20mg. Then i think the plan is to increase it if its not having much effect by then, the rummy wasnt very clear. X
|
Date: 28.03.2010
From: Verity
|
Subject: Re: New to this forum.
The rummy must mean business if theyre putting you straight up to 20mg. When you get up to 20mg though I found I had pretty bad side effects. Then when I went up to 25 it was horrendous for a couple of months.
At least theyre gettin to the high dose straight away then if it doesn't help they can try sommet else sooner rather than later. Some people seem to really struggle to get the meds they need.
|
Date: 28.03.2010
From: sally
|
Subject: Re: New to this forum.
Hi Wendy, welcome to the forum. I hope you find it as helpful and supportive as I do - and a bit of a laugh at times too. I'm on methotrexate but it's not working yet so am on steroid that I am reducing. Every time I drop down I flare up! Am a bit bad today, esp my feet. I get very tired too Kirstine. My consultant said it was the arthritis (have seronegative inflammatory) but I think it's the meds. Yesterday afternoon I just had to lie on the sofa all afternoon which is not usual for me.
|
Date: 29.03.2010
From: Abbie
|
Subject: Re: New to this forum.
Hi Wendy! I too have PA. I've had it for about 5yrs but wasn't diagnosed till Aug last year. I was put on mtx pills when diagnosed but due to side effects and them not working I was converted onto the injections 3wks ago. I also have depot steroid injections and take oral steroids. Despite these three i'm having a flare right now (CRP 38.8) so am taking Morphine for the pain. I'm everso exhausted because of PA and meds. This group is fab, supportive, friendly and informative I hope u get as much from it as I have in the short time I've been a member. Go well! Abbie X
|
Date: 29.03.2010
From: louloubelle
|
Subject: Re: New to this forum.
Hi Wendy - welcome! I'm fairly new to the group too and it's really good to hear other peoples experiences and advice. I've got PA too (began with psoriasis age 7 and developed the PA age 9 - I'm now 30 so can't remember a time when I didn't have it). I tried everything over the years without much success. I'm a bit of a rarity as far as PA goes as I got it so young, so vigorously and have had to have bilateral hip replacements. Began the etanercept 8 years ago and found improvement almost straight away (PA eased within a week and psoriasis went from 80% coverage to one tiny bit in my belly button within a month). The PA has never really caused me much trouble since and I have even been able to take up aerobics classes and can walk for miles; although I've been off the etanercept for 6 weeks now as I'm pregnant and cannot start taking it again until after the birth so I'm being reminded of what it's like to have PA affect your every day life! I was grilling my rheumy the other day about etanercept. He tells me that 95% of PA patients have improved results with the etanercept compared with only 70% of RA patients. PA patients also find that they can stay on it for longer and have a better response than RA patients if going back on it after a break. (Sorry RA guys, it looks as though us PA sufferers are a bit luckier with this one). I hope you have a good response to the etanercept! Take care x
|
Date: 29.03.2010
From: jill
|
Subject: Re: New to this forum.
Hi Wendy Huge Welcome to our lovely friendly supportive forum.....gotta go for now, but will be back later....the gang in here r fab, ive been coming in 2 years june...LOL u will c my name everywhere from previous posts....does me good, and glad this forum exists, they have been sooooooo supportive, and hopefullly u will enjoy the firum as much as we do....cos we r here 4 everyone....tc Jill x
|
Date: 29.03.2010
From: Wendy
|
Subject: Re: New to this forum.
Thank you for all the lovely comments,I've had P.A for nearly 8yrs now,it affects mainly my lower joints,does anybody else find it difficult to walk in the summer when your feet are that swollen you can't even get shoes on?might not be back on herre today as feel s*****y due to taking mtx i'll try to if not speak 2moro
|
Date: 31.03.2010
From: Abbie
|
Subject: Re: New to this forum.
Last summer my feet and ankles swelled so much my skin split. The Only thing I could get on my feet were flip flop slippers x2 sizes to big for me and I walked like i'd pood myself lol
|
Date: 31.03.2010
From: wendy
|
Subject: Re: New to this forum.
I.ve not had my skin split but i have to wear flip flops as well,they tell me at hosp just have to put up with it
|
Date: 03.04.2010
From: Lynn B
|
Subject: Re: New to this forum.
Hi wendy I have pa I also have painful feet,Rheumy sent me to the podiatrist, who took moulds of my feet and I have now got the most wonderful pair of gel inserts they are sooooo comfy its wonderful, ask your rheumy to refer you, you are entitled to some comfort tc x
|
Date: 07.04.2010
From: Elizabeth
|
Subject: Re: New to this forum.
Hi, I'm new to this forum also. I have PA, got diagnosed in November 2009, all my joints hurt, I have the usual fat toes etc, tried diclofenac but that didn't work, have lodine now and that makes things more bareable. Also have planter faciatis (think that's the correct spelling), I've had that for nearly a year now, steriod injections in the soles of feet didn't help and neither do the insoles from podiatry, although she is fun so I like going there.
I've had MTX for the PA but liver couldn't cope, plus it didn't help so I've got cyclo now, this is making me so tired, worse than usual and my psoriasis is coming back. I now sleep for 17hrs a day and haven't made it to work this week. I take codine for the pain but they don't do much, how do you guys who take morphine manage to go to work and have a normalish life?
|
Date: 07.04.2010
From: jil
|
Subject: Re: New to this forum.
HI Elizabeth, Big Welcome to our and now your Fab Forum, been coming in since over year and half, grt ppl, and lots of fun and good tips and advice...so stick with us, and u will get support and understand also a lot about other peoples issues.... Im al ways shattered and wish i cld sleep that long, but got youngish family, therefore knackered, I take morhine, but I dont work!! I couldnt, others on here will support u with your post, sorry I cant, we have so many different disorders, and conditions...tc Jill
|
Date: 09.05.2010
From: Sean Kiley
|
Subject: Re: New to this forum.
Hi, I'm sero negative doomed. The pain flares are intermittent, but the total knackeredness is becoming more debilitating than the odd crippling pain episodes. I have to work and I am really worried if anything can be done. The NHS seems to think this is a problem that can be dealt with with 4 month waiting lists to see a consultant. I have paid to see the guy privately to try to get sorted. Any ideas?
|
Date: 09.05.2010
From: KayJay
|
Subject: Re: New to this forum.
Sean have you had your blood tested for Anaemia ? I was absolutely washed out all the time when my bloods came back and Ferritin was very low. Had 3 months of Iron tablets and don't feel as bad.
|
Date: 09.05.2010
From: Abbie
|
Subject: Re: New to this forum.
Hi Elizabeth! I take morphine but Only do a day and a half vol work and it's Only because i'm on the morphine I can do so. I was drowsy at first but you soon get used to it. It's just the general fatigue from the Arthur I find hard to deal with and the day and after my mtx injection. I hope you pick up soon. X
|
