What do you think? I was recently told by my Rheumatology Dr that there is nothing else they can give me to control my constant inflammation for my RA. He told me to carry on with Baracitinib even though it’s not working brilliantly and to take painkillers when needed. I knew that I was running out of options as I’ve had lots of meds over 23yrs but I was shocked that he seemed to be giving up on me even though I told him I have no quality of life and spend three to four days out of seven in bed with the pain. Should I ask to see a different specialist from another trust? I feel I can’t give up on myself and deserve to have a better quality of life at 65. I would really appreciate your input on this dilemma. Thanks 🤗X
Dilemma Please Help: What do you think? I was recently... - NRAS
I'm quite shocked at what you've been told. I've had RA 27 years and ran out of drugs at one point but my team were with me every step of the way. They worked hard to find solutions.
I would definately do some research and ask your gp to discharge you from his care and refer you somewhere else.
I know with anti tnf/biologics there is a limit on the number of drugs you can have because of the cost. Have you had 4? Maybe that's what he means but I would have thought he would try find a trial somewhere for you 🤷♀️ or at least say he would be there for you.
No empathy at all, and I feel as though he has totally given up on me. Yeah more than 4. I got quite upset at home after it sunk in. He had just diagnosed me that day with Cervical Radiculopathy and sent me for xrays on my neck and shoulders as I’ve been having pain and tingling down my arm and have developed quite a lot of nodules in a short time. I’ve never had a great rapour with this Dr so I think maybe a change would be beneficial. Thanks for your helpful reply Kikideelili I really appreciate it 🤗X
I'd definitely get a new doctor.
Thanks, I’ve decided with all your help that’s what I need to do, stay well lovemydoggy 🤗🐾X
Don’t ever give up on you I don’t know much about your history But have some hope and faith in another doctor I am so sad you feel disregarded no one should feel like that especially when you ill and needing all the support you can get. 🙏🏽
I'm so sorry to hear this Angel. Don't know how long you have been with this rhumy but perhaps you could do with a 'fresh pair of eyes' if you feel he is giving up on you. Again perhaps listening to what you are saying and thinking outside of the RD box and seeing you as a whole person, might there be something else that is impacting upon your health and causing some of the pain, inflammation and how you are feeling? You absolutely do deserve a better quality of life and if he feels he is running out of options perhaps he could suggest/ signpost you to other people or things such as therapies, services that could offer some support/ advice or provide relief to pain/ inflammation and somehow give you back that quality of life. If not maybe it is time to part ways with him and seek a referral else where. Only you know how you are feeling right now and you should make that decision based upon your health as it is now and how you feel about continuing on the current meds you take. Never give up on yourself, you deserve better and I hope that things will pick up for you soon. Take care x
Hi Pippy, been with him approx 10yrs and to be honest he is a man of very few words, I can be quite open and honest with him but don’t get a lot back. There was no suggestions of any other help from him, the team or pain clinic, just to see him in 6months time. I did ask him if there was any new meds came up and that he thought I would benefit from to call me. Thanks for your advice, deep down I think I know my answer, it’s just good to hear it from others who know what we’re going through. Stay well 🤗X
This isn't giving you much quality of life is it?
A second opinion is needed if his mind cannot be changed.
I haven't read all the replies so I apologise if I am repeating anyone. If it was me I would see someone else, if possible at a different hospital altogether.
It's amazing what a new set of eyes and a new approach can do.
Just my opinion.
Thanks happy tulip,
That’s exactly what I’m gonna do. I think it’s just I’m feeling a little guilty having to transfer to another specialist after 10yrs with him. As you say “new eyes new approach” at the moment I have nothing to loose and everything to gain, stay well and thanks again.🤗X
Great. You really never know what will happen.
After two years of treatment nfirva systematic illness I sought a second opinion from a Prof in London. My first rheumies bead very good but felt that they couldn't brake me treatment any further and I was suffering organ damage. I was thinking "s***!"
So I got the second opinion, new fresh eyes 👀 and he found something.
Then I went back to my first Rhumie, I never lost faith or respect for them, just wanted a second opinion. I was a bit nervous but was determined that it would only be right to tell.them myself.
I was worried about their reaction.
"Excellent! Who did you see? I have no problem with second opinions, it's good to have another fresh set of eyes."
Me " well I saw Prof..... and he said X,Y,Z'
First Rheumie, " Oh I wish I had known last week I was at a conference with him for 3 days and we could have discussed you."
Turns out they are firm friends and I am now under their joint care. Brilliant result.
It took a while to decide to get the second opinion, but it just goes to show that you never know what will happen.
Ultimately, go with your gut instinct and I wish you lots of very good luck!
Hi Angel, don’t give up.. I’d be doing exactly the same as Kiki and Pippy and others have said and try for another opinion at another hospital. No one should be abandoned in this way because the consultant has lost faith. They shouldn’t lose faith anyhow. As long as you don’t and keep trying even though it is hard. Stay strong and try tackle this ASAP and hope you can find someone more determined. x
I think I was shocked at his reply and lost a bit of fight in me for a few days, but all your support has given that back to me, so thank you for everything 🤗X
We are eager to help. 💗 I know exactly how you mean when someone does that to you. Deflating and demoralising. You will bounce back and you sound like a fighter but even the best of us get down for a little while when negative things are said. I’ve a male nurse who gets involved when my nurse isn’t around and says some awful things and very ill mannered too. I calmly tell him he isn’t helping anything and he backs off a bit but he’s always charging in guns blazing and the patient knows nothing. 😑🤨Let us know how you go on. x
I’ll certainly let you know the outcome ASAP but knowing the situation with covid19 I’m expecting it’ll be a few months down the line. Thanks again 🤗X
Definitely look to transfer elsewhere, I did this myself as the hospital I was at just wasn’t giving me the level of care that I needed. I switched to another hospital in another trust and have never looked back, the difference is like night and day and the care I get now is outstanding. Good luck x
I am sorry your going through all this,I hope you get sorted out.
out of curiosity how do you change doctors and hosptail?? I don't need to my are fab, but I always thought you were under an area for hat ever hosptail you can go to???
mine are fab but 23 yrs ago they weren't, and I never got the treatment I should have so went back 3yrs ago ,I was ready to tell them, but didn't need to because they couldn't do enough for me, but if that ever change I would tell the one I was seeing that I was losing faith in them.
my dad always said to me, you have a voice use it, now I am older I am
Yes, I completely agree- don’t give up, change hospital if you can . What does your GP think of all this- they ought to refer you elsewhere. Good luck! Thinking of you.
Not contacted my GP yet as I’m waiting for his report on my X-ray results and appointment to land on her desk (GP not received them yet as I can access these on line) as soon as they are in I will ring her and discuss my referral ASAP. Thanks for your support 🤗X
You need a referral from your GP but it’s your choice where you want to go and they are both NHS trust hospitals.
My friend was surprised that I hadn’t been vocal to him, sometimes you get sick of fighting for everything and as you know pain wears you down and that was one of those days. Stay well 🤗X
Im just the same as everyone else, have nothing nee to say, but wanted to add my support to you. Go find a second opinion. You are too precious to be left with such poor quality of life. All the best 🌈
How about joint steroid injections too? Eg I get one into my knee every 5 months and I feel the benefit of it all over. You are too young to be suffering.
You must never give up. I think you should ask for a second opinion. x
He wanted to up my steroids but I feel upping to 5mg after trying to taper off them over 18month wouldn’t be a game changer. I’ve also had high dose steroid infusion but that only lasted 24hrs. I had a steroid shot into my shoulder but unfortunately all my joint are affected by RA and most days it’s an uphill battle, but thanks for your advice anything is sooo helpful. Stay well 🤗X
Hi AngelMar, I agree a change of doctor, it's horrible when you walk away from a visit feeling you've achieved nothing, a change of doctor that has a real interest will make you feel better mentally aswell as physically, I wish you well,
Best wishes sarah
I totally agree!....No this, that, or anything else, just nothing else I can do for you see you in 6months time. Thanks for your support, I’ve needed it at the moment as I was knocked for a six for a few days but I’m feeling more like myself now, “ let the battle begin” stay well 🤗X
I'm in the same boat as you lovely lady. Got to pd by my consultant to just take painkillers, NO meds at all !!!. Now waiting to see a new consultant. I know its frustrating particularly at this time but don't give up. Good luck
I soooo feel for you Bopeep,
I crashed and burned when he took me off all meds.
I’m taking 4mg Baracitinib atm and “they not working brilliantly,” and told him I was and have been taking Tramadol regularly for over 7months and was this ok as I know they can be addictive. His reply was if they work keep taking them!...not really bothered attitude. I wish you luck with a new consultant and keep well 🤗X
I in a similar position so I hear what AngelMar and yourself are saying. My last visit to the rhumy was in January and his parting words were he wouldn't make any further appointments but 'Come back and see me when you are feeling better'. A total insult in my eyes after all I have gone through and am going through. I'm awaiting some bloods to be finally done by my GP and hoping I can get to see her face to face as soon as possible as I need to discuss all my health in depth with her and a way forward and if another referral can be made to see someone who will actually listen and treat me as a whole body for a change. May be a tall order but I don't ask for much. Take care and hope you find a decent consultant too.
That's awful. I had 4 biologics until the 5th one worked. My rheumatologist couldn't be more empathetic. Perhaps you could give your location and someone might make a recommendation for a consultant?
Great idea!! I have considered the Freeman Hospital at Newcastle which is about a 40min drive from home as it has an Outstanding review. Thanks 🤗X
I also found the nras helpline very good. I knew my 5th biologic was really the last one to try but my consultant had said not to worry there were new JAK inhibitors being approved shortly. However, there was not much on the internet about these. Ailsa Bosworth rang me back to tell me all about them and was really very supportive. I'd only had ra for 6 years but it was described as unremitting. Thankfully tocilizumab worked for me.
I am so saddened to hear what you are going through. If it were me I would ask to see a different consultant, leaving aside that a different set of eyes can make the difference but to be “written off” is not acceptable. Don’t give up, I’ve learnt over the years that you have to fight (unfortunately) for your rights. A quote from a classic file “ nobody puts baby in the corner “ , go for it. You don’t have to be rude, just determined and polite. Good luck xx
Hi Angel, so sorry to here of your situation, you are a long term sufferer of RA like me and you do not deserve to be treated as you have been. Do you know what, long story short, if it were me I would ask for a second opinion. Good luck and I really hope you get a good result.
That definitely what I’m going to do, I have nothing to lose and everything to gain! Life can be crap at times and I feel as I’ve got older and older I’m getting pushed more and more to one side and I can’t let this happen. Your support is really appreciated, stay well 🤗X
By any chance are you at James Cook. I am. Just when you said you’re 40 mins from the Freeman it got me thinking.
No I’m under Darlington trust Hospital atm 🤗x
I thought you’d be seeing someone in James Cook. Aren’t the authorities linked in some way. James cook often send people to the Friarage for treatment. The team at James Cook are good.
Sorry just realised I said JC 3 times. I’m not trying to sell them. I’ve been with them since I was 6 am now 62. As you can guess I’m almost totally bionic. 🤣🤣
Thanks for that Craftywonky,
I think all the NHS trusts are linked in some way. I’ll definitely check out the James Cook as it’s about the same travelling time as Newcastle from my home in County Durham take care 🤗X
2nd, 3rd opinion. Whatever it takes to get some quality of life. Your 65 years young and plenty of life in you. Push for another opinion as everyone has said. My rheumatologist is awful. I always leave feeling unheard and uncared about. He cuts me off in middle of me speaking and wouldnt even look at the photos i took of severly swollen joints. He said he cant go by photos! Even though ive a small tattoo on my foot, so he would know it was me. How do i go about changing rheumatologists does anyone know. There is another one at the same hospital but id hate to have to go back to start of waiting list. The waiting list in Ireland is 2 years!! X
I thought you might have been talking about my Rhumatology Dr for a minute 🤣but I don’t live in Ireland.
A referral and discussion from your GP should do it, good luck and thanks for your support 🤗X
Same here Mickeymoo, I take my rheumy copies of reports, tests , photos and anything that is relevant and he gives them a cursory glance and hands them back. He even poo poohed a MRI scan report I had on my right knee done by senior consultant in MSK at a different hospital. He could have done the scan but didn't and said after a brief cursory glance at the report he felt the way it was done 'would have been better if he had of done it in another way' He also seems to have a thing for writing to my GP asking her to order a scan, bloods, x rays or referrals when he could do them. So as you rightly say be it a 2nd, 3rd or heaven forbid 4,5,6 referral, I feel it is so important that we are not only heard, but treated as a whole person and work together to achieve a better outcome and quality of life. Instead of being made to feel dismissed and in my case basically abandoned because I don't fit in the box or am not a text book case. I wish you luck and hope you are able to find a consultant who hears and cares about you and your health. All the best.
My last rheumy appointment was supposed to be in march but was cancelled due to corona. I think when i get my next appointment im going to stick up for myself and tell him that i dont feel he listens and that i leave his appointments frustrated. I have a couple of consultants for other health issues and they are so easy to talk to and listen to what u say to them. If he doesnt like what i say then im only being honest, i can ask to change to the other rheumy at the hospital. I read the 1st report he sent my gp and to be honest i think he was talking about a different patient! Nothing in the report was even close to what i said or he said. Thats terrible your consultant basically dismissed your scan results. I do believe some of these doctors think they are god and we are mere mortals!! Others cant do enough to help x
Wow the letter my consultant sent my GP was the same! I even changed my name partway through it, I was not happy and spoke to his secretary and have asked prior to lock down if I can write something to correct his errors to be put on my medical records. Sadly with all what has gone on I have not been able to do so but when I do I will also copy my GP into it and ask it be put on my records at the practice too alongside the letter. When you get a good consultant I am sure it must be like gold dust, but I agree some do think they we are mere mortals. So hope your next appointment is fruitful and if not perhaps as you say time to move on. Good Luck.
Wow I totally know how you feel I was left with nothing no treatment and told there was nothing they could do for me for 6 years. That was after my old consultant didn’t monitor me at all and I found that the rituximab infusions he gave me had taken my immune system out never to return. I got zero respect from him never had an appointment that wasn’t cancelled at least twice and was left to suffer. The good news is I have a new younger consultant who is fantastic and even though I’m still limited he goes out of his way to try and find a solution. I’m not a problem patient for him he contacts immunology for advice too so doesn’t just put me on a therapy as a one size fits all, let’s get rid of her attitude. What I’m trying to say is you’re so right you do deserve a better quality of life and I think you definitely need a second opinion and don’t worry what your old consultant thinks. You matter not their feelings you’re just a number to him by the sounds of it.
So sorry and I feel for you. You know your body best. If the drugs are causing side effects just don't take them.life style changes are a must with this dreadful disease. I battled with my rheumy for years, it got to the point I hated seeing her , I used to get all worked up. Then circumstances changed and now I have a proffessor, he suggested controlling high blood pressure and cholestrol was important and prescribed drugs. Even then I asked the GP to adjust the doses to my liking.
Basically doctors don't know..they read latest research papers from America and try to apply that knowledge to treat us.
I really think you should
Reduce stress, have plenty of good sleep, eat healthy simple food, fruit, veg and pulses, tasty spices, sweet puddings, fibre, love, love, love, nature, people, music.....
Maybe you do all these already.
I get so much pleasure just watching the little birds in my garden. Also have a frog. Lots of veg and fruit growing.
Had RA since 25yrs.
Fingers are sore, hands swollen, shoulders painful, keep applying Hemp natural gel....and take painkillers....
The drugs are fine no major side effects they just not controlling the disease and high dose steroids make me manic lol! I do eat a healthy diet and exercise as and when I can. I listen to relaxing music and also like you get pleasure from watching the nature in my garden blackbirds woodpigeons, robin, wren and blue tits, even the rain! as I’m lucky enough to have my bedroom facing directly onto my garden and live in a bungalow.
I don’t have a stressful life as there’s only me and hubby, but the continual pain day after day does take its toll. Stay well and thanks for your reply, it really matters. 🤗X
Tha nks, maybe the steroids are causing the bother. I had terrible side effects with just a few doses, teeth and neck pain was the worst.
But really this Hemp natural gel helps.
I’m down to 2mg of steroids now, but been taking them since January reducing slowly. I’ve been having neck & shoulder pain, got a trapped nerve (Cervical Radiculopathy) that has just been diagnosed. Think I’ll ask my GP about this hemp gel 🤗x
I really hope you can find a regime that works. I think this is such a personal thing, doctors are not able to help us. I am on mtx 15mg now and that is after I requested them to reduce it from 25mg where I constantly suffered from mouth ulcers. Even the last few weeks I skipped my dose due to hayfever.
I am constantly looking for ways to reduce inflammation.also try apple cider vinegar and tumetic milk. Something should work.vood luck.
Where do you get hemp natural gel from?
I get it from Amazon. There are a few different combinations. I tried two but prefer - 5kind: Hemp active gel.
See what works for you. It's about £18 and a pot lasts me a month.
It’s an awful situation as you’ve already experienced. But I have decided to move on from him and the trust. I tried without much success to find his personality but now I realise he doesn’t have one.
Like you’ve said one size doesn’t fit all and I deserve better care even if the treatment is limited. Stay well and thanks again. 🤗X
And again AngelMar, I think a second opinion is required.
I would push for one immediately.
Not sure which part of the country you live in - I am under Oxford Rheumatology Team at the Nuffield Orthopaedic Centre. They are brilliant. I am not on any drugs for RA at the moment but have have extensive surgery on my left leg - they were fantastic. I wouldn t go anywhere else.
you do know you can ask for a second opion . i must admit i am surprised they said that . im waiting to go to biologics because the normal meds dont work now . but she said there are always options
I know and that’s what I intend to do. I was very surprised too, and was quite upset. Unfortunately I’ve run out of medication options as been on many biologics and anti-tnf drugs over 23yrs of RA. I need fresh eyes that will hopefully give me some other options and hope. Stay well listellor and thanks for your support 🤗X
I would most certainly change your physician! A second opinion is definitely your requirement!!
Yes maybe another consultant in another trust.
I asked for a 2nd opinion and ended up with the new consultant just taking over from where the old one left off with no new tests given or suggestions so I'm still in the same position.
Thanks. The only struggle I have is getting them to sit down and go through everything with me. Always so rushed.
I'm sorry I'm a bit late to the post, but I would absolutely echo what most other posters have said about getting another opinion. To feel like you have been 'written off' like that is terrible. I've had JIA/RA for 38 years now since just after I turned 14. It's been very difficult to control and has, and still causes many problems.
I suppose what I'm trying to get to is that every time I've seemed to be running out of options, my Consultants have always come up with some alternative. Sometimes it can mean going back to older pre-biologic meds. Not perfect obviously, but you think your doc would consider them wouldn't you? Things like Azathioprine and Cyclosporin (I take this). I believe cyclophosphamide can still be used, and sometimes they used to use thalidomide in some cases. I'm sure there's probably others still too. Gold injections were the first treatment I ever had. Don't know if that's ever still used. You deserve a doctor who will consider all these things - just in case. Also, they can combine various drugs if they have to. Again, it's not ideal, but if you come to this point, then I'm sure you are finding that things are far from ideal anyway!😳 I've had a combination of 5 DMARD'S for a number of years now (including a biologic and steroids). It's a lot of drugs, and requires close monitoring, but I'm still grateful I've been given them.
I wish you the best of luck and hope you find a more sympathetic and imaginative Consultant. 😊
Aww thanks Kags,
Sounds like you’ve had a rough ride, 38years!!!
That’s a long time! Pleased you’ve had a good care team looking after you. I’m definitely changing consultant as I can’t give up just yet. Stay well & thanks for your support 🤗X