Seronegative RA

theresa4

HI Im new to this forum so hello to all

I have been reading alot of the posts on here and I have very similar questions. Luckily I have a great Consultant Rheumatologist who has taken me seriously from day one although I am not happy about all the different treatments I have been on.
My RF is negative and has been for 3 years since this started with just my finger and wrist joints in Jan 2006 I was 34yrs old. At first it was just aches and pains and feeling a bit stiff then it wore off then when it came back 6 weeks later my Gp decided to refer me as he felt RA was a possibiity regardless of the bloods. THis continued on and off for a year the flares becoming progressively worse by then in my feet and ankles too with the only relief coming from my depo steroid in my hip lasting 5-6 weeks. I have been on several DMARDS but no relief then tried Humira along with Methotrexate(MTX)but again that hasnt worked the pain has got so much worse this last year and I have not been working other than when I have a steroid which is why I can type this today. I am now waiting a decision on another biologic I am still on MTX but so far steroids are my only relief and I can only have them every 3 months at earliest my last one was 5 months before I had this one. I lose 6 months a year with pain where sometimes I cant dress myself. With 4 children albeit all teenagers and up it is very disappointing to live like this.
My question is I read on a website that patients with seronegative RA get less pain and problems than RF positive patients it made me feel like a fraud as my pain is so debilitating I cannot function some days even simply dressing myself or lifting a kettle to make a cup of tea, does anyone else with seronegative RA get pain like this???

magenta

theresa4 wrote:

HI Im new to this forum so hello to all

I have been reading alot of the posts on here and I have very similar questions. Luckily I have a great Consultant Rheumatologist who has taken me seriously from day one although I am not happy about all the different treatments I have been on.
My RF is negative and has been for 3 years since this started with just my finger and wrist joints in Jan 2006 I was 34yrs old. At first it was just aches and pains and feeling a bit stiff then it wore off then when it came back 6 weeks later my Gp decided to refer me as he felt RA was a possibiity regardless of the bloods. THis continued on and off for a year the flares becoming progressively worse by then in my feet and ankles too with the only relief coming from my depo steroid in my hip lasting 5-6 weeks. I have been on several DMARDS but no relief then tried Humira along with Methotrexate(MTX)but again that hasnt worked the pain has got so much worse this last year and I have not been working other than when I have a steroid which is why I can type this today. I am now waiting a decision on another biologic I am still on MTX but so far steroids are my only relief and I can only have them every 3 months at earliest my last one was 5 months before I had this one. I lose 6 months a year with pain where sometimes I cant dress myself. With 4 children albeit all teenagers and up it is very disappointing to live like this.
My question is I read on a website that patients with seronegative RA get less pain and problems than RF positive patients it made me feel like a fraud as my pain is so debilitating I cannot function some days even simply dressing myself or lifting a kettle to make a cup of tea, does anyone else with seronegative RA get pain like this???

Hiya,
I too am sero-negative and I hate hearing that 'we' don't tend to suffer as much pain as RA sufferers. I've also heard that our arthritis isn't as aggressive as RA but I think both those statements are completely untrue. I'm like you and suffering terrible pain near enough everywhere in my body-you've probably read a few of my posts? I agree with you on feeling like a fraud-especially when my rhuemys don't really think there's anything wrong with me. Your pain is as real as anyone elses and I hope you get it under control soon. Take care,
Magenta x

colinone

Hi theresa4

On Wednesday 8th April we are going to try and set a new record for most people being online at the same time on this site. I think the time is set for 6pm if you can join us please let BADGER know. If you cant locate him have a look on CHIT CHAT FORUM under are we going to break the record. We need your help to do this so please join us.

theresa4

colinone wrote:

Hi theresa4

On Wednesday 8th April we are going to try and set a new record for most people being online at the same time on this site. I think the time is set for 6pm if you can join us please let BADGER know. If you cant locate him have a look on CHIT CHAT FORUM under are we going to break the record. We need your help to do this so please join us.

#

I will try unfortunately that my med day and it makes me feel very ill for the day so I tend to sleep it off. Should be up ish by then will put a note in my diary

theresa4

[
Hiya,
I too am sero-negative and I hate hearing that 'we' don't tend to suffer as much pain as RA sufferers. I've also heard that our arthritis isn't as aggressive as RA but I think both those statements are completely untrue. I'm like you and suffering terrible pain near enough everywhere in my body-you've probably read a few of my posts? I agree with you on feeling like a fraud-especially when my rhuemys don't really think there's anything wrong with me. Your pain is as real as anyone elses and I hope you get it under control soon. Take care,
Magenta x[/quote]

Hi Magenta
Yes I had noticed your posts I know how you feel except the problem with the rheumys as mine is great. He is very understanding what I found helpful was to type up the kind of pain and where it is and when I get it how it affects my life and my family and then I hand him updates. He is very sympathetic his registrars and sho's not so much but his clinics are great as you see one of his 'underlings' then he comes to check you are happy with what is going on and if not he deals with it. I am usually in flare when I go see him, today I will see him with much less pain as I had a steroid injection 3 weeks ago so I still have 2-3 weeks left although the stiffness is creeping back in. Hopefully thta will change his view as last time I think he thought I was a basket case as I was hysterical about my life changes and how I unjust it all felt. He told me to get antidepressants so I am looking forward to showing him today I am not depressed I am frustrated !! as I am fairly pain free (Not that it ever really goes away.)
My 15yr old asked me last week why was I different and so giddy she hadnt realised I had had a steroid but noticed the change in me my kids had meals on the table after work/school and I was having conversations with them all just shows you how pain affects your every being!

bailey27

Hi,
I have recently been told I have sero-neg too. I am awaiting my first rheumy appointment for a formal diagnosis but know exactly how you feel.
I have good days where I can go jogging, go tot the gym but then more oftent han not afterwards I am left with bad days where it is impossible to get out of bed in the mornings as I am in so much agony.
I have it in my lower back and pelvis and find it stops me doing even the most simple tasks.
I am 28 years ols and know this is going to get worse as I get older but have told myself that it will not beat me and will not stop me doing the things I love to do even if it does mean I lay in bad for half a day afterwards.
Keep your chin up and try not to let things get on to of you. It is difficult when you may feel it is not taken seriously as you are in so much discomfort but try not to let it get you down.
Sorry I cant offer any advice but I know how you feel and where you are coming from!
Take it easy x

theresa4

bailey27 wrote:

Hi,
I have recently been told I have sero-neg too. I am awaiting my first rheumy appointment for a formal diagnosis but know exactly how you feel.
I have good days where I can go jogging, go tot the gym but then more oftent han not afterwards I am left with bad days where it is impossible to get out of bed in the mornings as I am in so much agony.
I have it in my lower back and pelvis and find it stops me doing even the most simple tasks.
I am 28 years ols and know this is going to get worse as I get older but have told myself that it will not beat me and will not stop me doing the things I love to do even if it does mean I lay in bad for half a day afterwards.
Keep your chin up and try not to let things get on to of you. It is difficult when you may feel it is not taken seriously as you are in so much discomfort but try not to let it get you down.
Sorry I cant offer any advice but I know how you feel and where you are coming from!
Take it easy x

Hi and thank you
I Have just been to see my Rheumatologist he was very kind and pleased not to see the basket case of 3 weeks ago now he sees how different things are following a steroid. They are putting me on another 'new' drug called cetrolizumab does anyone know anything about his one? they dont even have patient information leaflets on it yet!! Waiting for a phone call to say I am approved?? I cant believe after years of homeopathy and aromatherapy I am now moved to this taking every and any drug offered just to get by!! and begging for steroid injections every 3 months whereas in 2006 I argued that I didnt want THAT STUFF in me! lol x Take care all xx Theresa :?

magenta

Hi Theresa,
Glad your appointment went well. I haven't heard of that drug-a new one on me! I too have been told I must be depressed but you get so frustrated trying to tell a stranger how you feel-don't you?
Take care,
Magenta x

frogmorton

HI Theresa
just read the whole thread in one go!
So glad you have the hope of a new med - will cross everything taht it works
I know what you mean about not talking when you are in pain - my life can sometimes 'stall' as I can only think of pain :shock:
Take Magenta to your rheumy please!!! She needs help too!
Take care
Toni x

theresa4

HI all again,

Its now December and I am still no better, I have now been on Hydroxychloroquine, Sulphasalazine, MTX (on own), Humira, Enbrel, and now starting Abatacept (orencia)with MTX. Ive been on the Orencia for a few months but keep getting ill so having to stop and start. I had enjoyed a steroid in October but that has now worn off now and I am back to square one. Feeling very low at the moment and very snappy with my family. Just want to curl up and sleep til I am better (unrealistic I know). It will be four years in January since I started with symptoms and still no closer to an effective treatment. I know I am very lucky as I get alot of treatments compared to others as my rheumy is brilliant but none of them work and I am so frustrated I am taking these poisons and nothing is better.

Sorry to whine on but my family and friends are becoming less sympathetic as time goes on I keep getting told thats just the way it is and I have to get used to it (oh and wheres the dinner!) I am only 38 and cannot accept that this is my life from now on. 1 good day 2 bad days etc etc....I cant plan anything as I dont know how I will feel on any given day which frustrates my kids. Some days I can walk some days I cant. Maybe its time for me to accept things but its so hard x Thankyou for giving me a sounding board. x
Theresa

salamander

theresa4 wrote:

HI all again,

Its now December and I am still no better, I have now been on Hydroxychloroquine, Sulphasalazine, MTX (on own), Humira, Enbrel, and now starting Abatacept (orencia)with MTX. Ive been on the Orencia for a few months but keep getting ill so having to stop and start. I had enjoyed a steroid in October but that has now worn off now and I am back to square one. Feeling very low at the moment and very snappy with my family. Just want to curl up and sleep til I am better (unrealistic I know). It will be four years in January since I started with symptoms and still no closer to an effective treatment. I know I am very lucky as I get alot of treatments compared to others as my rheumy is brilliant but none of them work and I am so frustrated I am taking these poisons and nothing is better.

Sorry to whine on but my family and friends are becoming less sympathetic as time goes on I keep getting told thats just the way it is and I have to get used to it (oh and wheres the dinner!) I am only 38 and cannot accept that this is my life from now on. 1 good day 2 bad days etc etc....I cant plan anything as I dont know how I will feel on any given day which frustrates my kids. Some days I can walk some days I cant. Maybe its time for me to accept things but its so hard x Thankyou for giving me a sounding board. x
Theresa

Hi Theresa, just read this thread all in one go. You must be very disappointed if the treatments aren't working very well for you. I am just about to start on Methotrexate so am only at the beginning of all this but do understand how hard it is to be constantly limited with what you can do. My family and friends are great but don't always understand that, although I look ok, I am sometimes in a lot of pain or very tired. I am finding that I can only really achieve one thing in a day - unlike my old self who was very active all the time. I'm beginning to get used to it and the steroids have helped a lot, not so good on lower doses though. It is completely frustrating at times! I expect you will soldier on but you are not alone. love Sally