For 4/5 years I have been under the inflammatory rheumatoid department . It has not been an easy time. I was given Humira and Benapli but infortunately had unpleasant side effects. My then consultant was very unpleasant , PALS stepped in and I had anew consultant . I have seen her once , she politely disagreed with former diagnoses ( stayed loyal to her colleague) put me on a month of prednisilone . Sadly it sent me quite mad xith lack of sleep. The urgent helpline nurse did not ooze sympathy, told me » insomnia isn’t on this departments remit ». I have not reseen the second consultant . I had a tel app with a nurse , she told me I must start Methotrexate . Would not listen to my fears. My ankylodis spondilitis, psoriatic arthritis, seronegative , pubis osteitis ( I don’t know what I have got) have suddenly escalated . Most affected , visibly , is right foot . I can hardly walk, now knee, hip andback are affected . In desperation I went to London Bridge hospital . They were so kind, looked at all my notes and examined me . Treated me as a human being . But , the consultants there think what I have is widespread osteo arthritis . He is writing to my gp to tell her his findings , ask for a foot scan etc. I do not think this will have much effect , my gp (young one) seems afraid of suetoon’ing the hospital .
I am impressed by the very different appointment I had in L B H. The consultant was so human and did not want to take more money off me.
I do not know what to do , if I have been treated for RA or if in fact as LBH say I have widespread osteo arthritis ? Dilemma , making me so tired and inhappy. I have spoken to lovely Rosie at NRAS a while back but no one had suggested osteo then .
Louise Dean
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Luludean
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no one would surely put you on MTX if not needed as OA not treated this way??
I know tiring but you need to somehow get thro to someone re all this and all the different diagnosis as this is not helping you physically or mentally.
I was lucky two months back every one would give a different view thoracic cardio heart a&e and GP. In the end after a chat with a senior GP he is now managing my case when I get info and whether he needs to step in to advise me or speak to a consultant. I know I know I am lucky but you need someone in your corner.
call NRAS and see what they feel re all of this too.
Thanks Deeb , to my horror I thought I had sent that post to the NRAS! Or an admin person . Not « everyone » how humiliating!
Yes I am unravelling !
You have heart problems too , like me . It leaves only pain relief parecetemol .
Glad you trust that department , I used to have yearly cardio tests. Not now .
I used to trust my GP but during Covid I and others were given to 2 new part time gps ,without being told . So all support network swiped away . Too damn tired to try PALS , MPs etc ,
Please don't feel humiliated - if you're unhappy about your name being on your post you can easily edit it but I'm sure that you'll only get support from everyone here. It sounds like you're in a horrible situation, I hope that you get answers - and appropriate treatment - soon. 💐
I would agree with Deeb1764 on this and have another go at PALS as you are clearly not happy with your treatment. If you get nowhere go to A&E at least they will have a good look at you and try and help you. Hugs from me xxxx
Ah don't feel embarrassed your post is true of many of our experiences the not joined up approach and not listening to us is common hope you get the correct treatment soon.
Hi Luludean, we are sorry to read everything that has been going on, sounds like a stressful time at the moment. If you would like to call our Helpline on 0800 298 7650 for a safe space to offload feelings, you are always welcome to call us. Kind regards, Rosie@NRAS
HiLike you I have been treated for RA... actively since 2018.
My particular issue was my left knee which - no matter how much methotrexate, other dmards and over the last year - a biological treatment - has caused me unending pain.
A random steroid shot and ultrasound with a physio led to a referral to orthopedics who confirmed I had bone on bone OA in my left knee
I may have RA in my bloodstream but OA has clearly been there for years.
Rheumatology has never xrayed the joint.
I am mindful now that I need to keep an eye on my own joints and may seek a private x-ray of my right knee and elbows just to be proactive. I think also I might see if I can be seen at a closer hospital as well.
I wish this had been spotted sooner as now am facing knee replacement which is impossible due to my tomophobia issues. So a life of pain beckons for me.
Lol...fear of surgery I think. It explains my jumping off an MRI 😂 and all round fear/tension with medical matters. I would forego surgery out of fear.
Hi, I was started on prednisole and it gave me insomnia too but this was preferable to the knee ankle and hip inflammation along with the fatigue that I had before, which started unexpectedly in January. The steroids are being tapered off and I'm supposed to start Mtx. Maybe you could give the oral steroids a try again to get a quick help with your symptoms while the consultants work out a long-term solution, but perhaps a lower dose? Having had bouts of chronic insomnia in the past, I felt it is unpleasant but survivable whereas my arthritis was having a much worse impact on my life. I think the consultants would need to do scans and blood tests to work out which type of arthritis you have but it sounds like something has flared up that needs damping down again, you shouldn't be left like this, I hope you get what you need soon!
many years ago an arrogant ra consultant wrote to my gp after a consultation stating he did not think I had ra! I wrote not to pals but directly to the clinical director questioning why if I did not have ra had I been given disease modifiers for years. I got an appointment with the clinical director (this is a large specialist hospital) who went through my notes and spent time confirming that yes I had ra and I had received the correct treatment. The consultant no longer works for the trust, not sure how quickly he left after my complaint but certainly no long after.
Since then he has kept an eye on my treatment when it is changed and made time to even pop in to the consultation room I am in to check I am happy with my treatment options.
Do not ever feel you do not have the right to question your treatment, one thing to always keep in mind that your treatment requires you to give informed consent. Which in short means you have to understand the treatment, side effects and why you are being given the treatment. Also you are the person living with this condition and have the right to a quality of life.
it certainly isnt an easy ride. In my 40 years of having RA I have certainly seen the system lacking. I never see the Rheumatologist now….who is the only person who can answer questions fully, unless I pay privately….which I have done. That worked well for me. Good luck
Moved here from London . Been here 30 years , so much has changed !! New estates everywhere , acres of houses and flats but no schools , shops or doctors . Looking out now on a battered garden . Too lazy to go and prop things up . Must be sunny tomorrow. L
In my opinion and experience ALL treatments for severe illness can also have severe side effects and sometimes you have to put up with one or the other. What is certain is that a disease left with no treatment can have irreversible effects on your long term health. You should get hold of NRAS, but at end of day a decision should be made.
What treatment are you already on for ‘ankylodis spondilitis, psoriatic arthritis, seronegative , pubis osteitis’?
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