Thank you so much for all of you kind people for taking the time to respond to my questions, my anguish .
I received a call this evening from a nurse in the Rheumy department, who really listened to my last plight . She conveyed respect, understanding, empathy and a total understanding of the world of RA ( My world of living with my RA') I felt a total sence of freedom ' I'm being at last being listened to' For the first time in 18 months I learnt more about living with RA than any consultant, Biologic specialist or nurse has ever taken the time time to convey to me. To summarise, i need to go into my next appointment ( stripped from steroids and anything else that is getting me through) to be seen at my worst.. but I am reassured they will try and find me the right treatment plan to help me move forward. I will continue to be determined to be optimistic and positive! But one thing the nurse said resignated with me. She conveyed ' You have Sero positive RA which means you have an aggressive form of RA which entails an aggressive form of treatment' it brought me back to my message some months back when my question was ' zero positive versus zero negative RA what does this mean?' it made me think about those diagnosed with ' Sero negative' to feel in limbo! You experience all the effects of RA, You're treading the same journey of pain and anguish , however, you have no definitive answer. I know we are all unique in our journey however, we all share the same journey in so many respects, but this forum allows us to get together as strangers in each other's world of living with this condition but so close in so many other ways.
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Jaxine
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So glad to hear that you managed to speak with someone and felt listened to. It can be incredibly difficult, finding the best treatment path but hopefully, you’ll now get something sorted.
I agree with you re this site. It’s a real safe port in a storm.
Eiram encapulates what many of us would wish to reply. It is a very safe portal and yes we are strangers in many, many ways. In adversity, however, we find common bonds and more often than not a friendly hand to hold whilst we struggle and we in turn, will offer our hands when needed.
I am so glad you have been listened to, it is so fundamentally crucial to our care and sense of well being, emotionally and physically. Wishing you all the best moving forward. x
Thank you RosieA . We all have our close friends and family who offer their support, love and empathy but it is also the understanding that we seek. Empathy is so important but to have total understanding of how this condition embraces our health is vital to our wellbeing. I feel refreshed from the ongoing support of you all.
What a difference just being listened too and understood. 🤞going forward on your new treatment. I learnt more on here than from any medic. A god send this forum
Agree totally. From the beginning, 18 months ago and a newbie on this site, i was supported and listened to by people so much more experienced than me, who have lived years with this condition, who offered solice and wiped away my constant doubts, fears. and anxieties. X
I’m so glad you were listened to and do hope that your next appointment will come very soon. There are such a wonderful variety of people in this group who can offer everything from advice, support, the benefit of their experience, a few kind words of cheer or just a sympathetic “ear“ when one needs to let off steam. It is because we have all benefited in our own times of need that it gives us pleasure to help others on their journey. X
Really good post Jaxine, I'm really pleased you're getting somewhere at last. Long may it continue and I hope you find your treatment pretty quickly. All the best. x
What a lovely, thoughtful and considered post. You are absolutely right about feeling listened to - it makes such a difference. It can almost like a bit of a weight has been lifted at times.
I really hope this leads to better treatment for you and a real improvement in your symptoms. It must have been a very difficult 18 months. I'm happy you found this site and have found it so supportive. What a nice thing to say!
I'd like to thank you for such a lovely and considerate response . It has been an awful 18 months, but having read other people s posts I know I dont walk alone. I'm looking forward to my f2f now and a clearer path. X
Aah, thanks Jaxine. You are very welcome btw! Yes, as you rightly say, we are all stumbling along the same uneven path! Fingers crossed yours will becomes a bit clearer now🤞
I must admit to conveying that on the phone! Problem with RA it s so complex and changes constantly. I myself can t leep up with the ever ending challenges. On our good days it feels we have escaped this wretched disease only for it it to come back sreaming with even more vengeance than before. It s not just the physical pain either it can destroy the soul and the side effects of the drugs can be worse than the effects of RA,. An ever decreasing circle. But as we do with no choice but to plod on with optimism and positivity. Xx
Really good to hear that you have an empathetic specialist nurse.
You might like also to know that the 'sero' bit - refers to 'serology'. It doesn't mean zero, although sometimes it feels like that (from another sero-negative person).
I hope you mean Serum positive and RA is a journey through life with all its twists and turns. I always say I have RA (serum positive) but I am not defined by a disease. lol x
I would love to say I'm not defined by my disease, but if the truth be known when RA attacks as vicious as it is, I do indeed feel defined by it, as it embraces like a tidal wave physically and mentally. Whilst that won't resignate with many people ' not being defined by their disease' I alas when under attack do! Of course I will continue to fight through and ride the wave but sometimes I do feel crushed by it. Positive/negative either/or it s ugly!
I've had it a long time and having an AKI and all that entails makes RA seem fairly trivial. Thats not saying it is, but its not life threatening and you don't know about fatigue until your kidneys work at 8%. Unable to stand up alone, in the ICU puts things into perspective. All things are relative is my point, and once in remission life is normal. Not everyone achieves remission but a lot do. It's about attitude even on a bad day or even week I know that the RA has good medications and it will improve. An CKD doesn't have treatment for me and at some time probably not far away dialysis looms so yes RA isn't going to define me as a person. I live with it because experience tells me that I must, and to be honest once in remission life is normal. So try to stay positive and never give up on leading a normal life. Back in the days of my first diagnosis it did seem truly awful (which took a long time) but nowadays things are very different, good meds. and new ones coming it seems are ever improving treatment and putting more and more people into remission.
It does take time to get RA sorted ML, without having other conditions to contend with....thankfully you have managed to do that.
But purely regarding RA, until people accept their diagnosis, & understand they will probably be taking RA meds for a very long while .......they won’t get their head into the right space to benefit from their treatment.
Until they accept it will take time, & that each of us needs different drugs for our own individual condition.....they will sadly chase a dream solution that doesn’t exist....no matter how many doctors they see...that is unfortunate, but true.
I've certainly excepted it, no choice! But I would be lying if I said it hasn't at times made me angry it has vemently so. But my optimism will certainly invite with welcome arms any new treatments on offer to me.
Yes I think when you have other conditions far worse that RA it puts RA into another league. I suppose we all have our our own journey to bear However small. My friend who is battling breast cancer and also has diabetes 1 was in a shop the other day and overheard a young man complaining of a head ache, she went over to him grabbed her knitted hat off her head ( revealing her bald head from months of chemo) and said ' At least you dont have cancer'! My father was diagnosed with Chrones disease at age 25, ( 60 years ago) the treatment plan then was to operate and cut away the swollen part of his intestine, until they could longer safely cut away anymore. Years of hospitalization , medication and steroids he lost the use of both of his kidneys. My mother donated one of her kidneys in the end as months of dialysis took it s toll on my father. 1 year later my father was diagnosed with dementia and 5 years later died last October. We all have our cross to bear, never easy, often hard and we never know what s round the corner. I also have osteoarthritis and asthma which is no fun, but we must plod on.
Yes with reference to my last message, my father suffered for years as a consequence of the limited amount of treatment options available. We are indeed very lucky to be offered so much more.
I'm sorry about your dad its hard I know and Dementia is awful too, my mum had Vascular Dementia but even worse was the Osteoporosis. I thank god every day I don't have that she had broken vertebrae, shrunk to a shadow of her former self and was in so much pain. she really suffered. Pain patches gave some relief but I have awful memories of the suffering she endured. I take every day as it comes, and wake up tired going to bed exhausted I'd give anything to wake up refreshed but its not going to happen so as my mum would have said " what you can't changed sometimes must be endured" . Today has been bad, its a PJ day on the sofa but tomorrow I'm determined to go to Sissinghurst for a walk. lol
I’m sorry you’ve had a bad day.....but very pleased you are looking forward to tomorrow...it’s so easy to wallow isn’t it?
Tbh...these days I just deal with my own health. Of course I empathise with others & do anything I can to help...but If I took to heart everything my loved ones had suffered from....I’d be a mess & no good to myself or anyone else.
Thank goodness I have just found out I am off the hook for osteoporosis....for now.......I know that could change tomorrow ...so I’ll deal with if it happens..no point worrying about it now.
But I am really hacked off knowing my fractured vertebrae have cost me 2” in height..I was only 5’5” to start with 😂.
Wouldn’t be so bad if I could still wear stilettos 👠...but that would probably end up with a broken hip.....or worse!
Yes wallowing is a good expression and I think it might be something I've eaten or i seem to be very prone to dehydration. And yesterday in Maidstone was hot. My mum was tall and lost a lot of height and so I'm very glad your in the clear at least for now. I thinks well like a lot of people the first thought with a headache is COVID then the imagination can take over. So today it's been nice to just loiter with no intent and read. I had planned to make grapefruit syrup for cocktails but it can wait. Its rare that I feel this bad so its probably a bug and new shoes always make me feel better, and yesterday I turned down a trip to the best shoe shop in Kent thats how my husband knew I didn't feel good. So tomorrow is another day .... lol xxx
Hi Jaxine I'm so pleased you are now getting somewhere at last says you ,I wish you all the best and hope you get put on to what will help you ,take care x
Very nice post!! I have an extremely good/understanding rheumatologist and that makes such a big difference when dealing with this disease! Glad you found someone to trust too!
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Rheumy said
Sero positive consultant tells me it's most aggressive and I will flare soon ☹️☹️☹️
If you have a diagnosis of inflammatory arthritis,should you ask doc to say what type of arthritis it is/may be?
Aggressive Targeted B cell Approach to RA
Zero negative RA
