Silly, I know, but I have my f2f tomorrow at the hospital to test if I am eligible for Biologics and feel rather in a tizz.
My initial DAS28 was 4.4 and am beginning to understand that as someone who is seronegative, with normal CRP/ESR and -veRF more joints will be involved if DAS28 score increased and therefore reaching 5.1 is less than ideal really as it will indicate a lot of deterioration in the 9 months since diagnosis and treatment. Last hand joint 'ouch' test by me got to 16 joints and probably at least 4 swollen, so more than before (other areas that hurt aren't counted - ankles / neck)
So the tummy butterflies is a combination of trying to avoid Biologics (family history of lymphoma, and +ve ANA) but also knowing that conventional DMARDS were not doing the trick.
Head's buzzing, tears loitering and reality is really that I might have little choice and active disease is certainly limiting my life. I am lucky in that my Consultant is lovely and is up for a good chat about things.
Sorry for the offload. Hope I'm not alone in feeling in a pickle about these things. I know that Biologics can be game changers. Is cost really the only reason they are not used initially to combat moderate to severe RA or is it the risk factors involved? Advice and golden nuggets would be very welcome.
Feet up on sofa as the fatique nausea has hit early today - just managed to trim the dog -in readiness for the heatwave. At least she'll be comfy.
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RosieA
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Biologics are extremely expensive. It is that cost that inhibits their use via the NHS.
No doubt, a cheaper biosimilar, now much more available but still high cost compared to DMARDs, will be recommended if your tests are all ok and you’re approved.
Even when my joints are not obviously hurting, if anyone grabs eg an elbow, it is very painful, indicating active disease.
I too have had a longish journey to find a treatment for suitable long term use. Review next Thursday, probable second round of infusions to follow.
I always find any harsh drug therapy rather scary and have to ignore my fears in the knowledge that staying with active disease is more damaging in the short term, never mind long term.
Pups is indeed a happy girl - darting around house and garden finding toys and showing off.
You are right and thank you for putting it into perspective. You made me reflect upon all I had lost during the progression of this disease. I used to love ballet - the last time I tried part of a class (online with teacher I hasten to add) I lasted 20 mins of the warm up and gentle stretching before I felt wretched and ended up in bed. I know that my general health, heart, muscle tone is all suffering. I haven't picked up my beautiful classical guitar in months as I can't concentrate let alone do the fingering.
I will endeavour to embrace the outcomes of tomorrow and stop sweating the small stuff - big picture thinking is in order.
Do you test your own joints? I did. Mine are often worse in the morning so I made a note and this helped with my score. Stress may make things worse as well. I fought for s biologic so glad I did I’m in a better place not perfect but much much better. Good luck
Yes, I have kept a diary over last 2 weeks (only four times) today hands /wrists in a mess, 18 tender and 4 or so swollen. Will take my little art work with me. I think the plan is if I score what is needed then they will do the bloods for TB, chest x-ray and counselling all whilst I am there so I don't need to go back. Alcohol gel, mask etc all in handbag at the ready. So glad that you are in a better place. Gives me hope. x
Good luck for tomorrow, I know nothing of biologics I’m sorry but there’s maybe a reason why NHS won’t routinely offer it out - if the cost is high, maybe it’s because it’s good. No idea but keep strong 💪
Thank you. Yes cost can be a limiting factor. I have read articles suggesting that people with moderate disease can be missing out on drugs that may be more effective for them. I think this is something that NRAS is exploring. I feel a little calmer having drawn on the strength of this community. It really is invaluable. x
Hi Rosie. I just want to wish you good luck for tomorrow. It's easy to say I know, but try not to worry as from what you say, you have a good Consultant who listens and obviously then will also take your fears into account when assessing what treatment is best for you. Whatever the outcome, I hope it will be successful for you. Take care. Hug for the dog by the way. xx
Thank you. Have passed hugs onto the beautiful brown blob slumped over the back of the sofa, with pink toy sticking out of her mouth like pipe. She thinks she is one of the cats I'm sure. Yes, I must place my trust in them and come to terms with both the disease and the treatment. I am lucky with my consultant I know.
Pups is suddenly alert and requesting toy to be thrown, she has a lot of poddle in her so is very vocal in her requests for play. Melts your heart. x
Good to know for me too, it’s a fear of mine that they will just start me of with metho just because it’s the obvious popular one but face the risk of a “ trial and error” drugs. It saddened me to read about your ballet and guitar playing, one thing for sure you can say you achieved something wonderful which many people won’t have experienced. I like falconry, so longer term my fear is not being able to handle the birds but hey ho, I just have to take on board what I’ve just said to you. Big hugs, go for it 👏💪😘
Metho is generally the first drug the majority of people get and can be very effective for a lot of people. I feel much better since starting it. Just because some people are on biologics doesn’t mean metho isn’t effective. Good luck.
Good luck tomorrow Rosie and I hope you can get started on a treatment that will work for you.
Incidentally, I believe Rituximab is a biologic drug that was originally developed to treat lymphoma but is sometimes prescribed (or it's biosimilar, Truxima which is what I get) to RA suffers and it's been a life changer for me. For RA it's given in much lower doses than when used for it's original purpose. Unfortunately your consultant may not be too keen to prescribe it just at the moment as it suppresses the immune system. I'm waiting for my next infusion, which is overdue, but I'm coping ok at the moment.
Yes, this drug has been mentioned. I think the Consultant is going to chat to heamatology about risks. As you say, the concern is in how much is supresses the immune system under the present circumstances. Glad though, that you are coping well at the moment. Fingers crossed it continues. Thank you for your kind wishes.
It is not just cost that determines whether you are offered biologics. A lot of work now shows that conventional DMARDs can give as good a result, with a lower day to day risk as they don’t compromise your immune system as much, so a much lower risk of infections. Which is why you have to have tried and failed on conventional drugs before they will be considered.
The bad bit is having got to that point your disease needs to be severe enough to qualify - which is a bit wrong to me. In England I never qualified as my blood results were so good that I never got over a DAS of 4.9, and conventional drugs slowed progression to a crawl. However, in France, after a couple of years my rheumy was quite clear that the signs of erosion now meant I had no choice. I still delayed the decision for quite a while as I was worried about infection risk rather than lymphoma. There is something like a 10% increased risk of serious infections (ie needing hospital treatment) which when you live in the back of beyond is a bit unsettling. The infection risk also means they might not be offered to everyone, eg people with a history of infections.
It really does seem that the lymphoma risk is not that great when balanced against the increased risk of lymphoma just having uncontrolled RA - but if you have a family history that might change things. I thought this recent review could be interesting to you
Good that you can talk thing over with your rheumy. But if you have deteriorated so quickly and not responded to conventional treatment then I personally think the writing on the wall is pretty clear...?
A very good, reassuring article. Thank you. Certainly, at the moment I am under no illusions as to the damage uncontrolled RA is doing. Sadly, I looked at my diary when on MTX over a 4 month period (after the initial run in time) I worked out I had 82 good or average days but 54 bad days - which for me meant on the sofa!! LEF gave me mouth problems within 2 days. I gather from my reading that sero-ve RA can be harder to treat - rather it might mean a longer trawl finding the right meds.
I gather NRAS are looking into the issue of moderate RA sufferers and access to biologics. It does seem absurd that more joints need to be involved before entitlement. I might be RF-ve but am ANA+ve (should perhaps count towards DAS score), also normal inflammatory markers are normal but plasma viscocity is high - so inflammation is there. Ho hum! All will be revealed tomorrow and as you say the writing appears to be clear.
Hi Rosie. Firstly I wanted to wish you best of luck for today. I am sero-negative and started my first Biologic last July. I remember being in two minds whether to be pleased I qualified or disappointed that I had to, but ultimately decided to start it as I wanted to improve my limited quality of life, and be able to be the best Mum I could be for my two children. I was interested in the point you made about your plasma viscosity being high - like you my CRP/ESR markers are usually normal - which of your blood markers indicate the high plasma viscosity? Xx
My understanding is that it is all trial and error at the moment, even with biologics but there is hope of more personalised meds on the way. Yes, I miss my ballet at the moment and had just started pointe work even at my age- loved it. I do so hope you are able to keep up with your falconry - passions and hobbies are incredibly important and in may ways help to define us when we stop official working. Will post results tomorrow if you wish. x
Biologics are never prescribed by trial & error Rosies.
As you will find after your appoint tomorrow there is much more involved than your DAS score.
You should stop reading all the doom & gloom reports......your rheumatologist will make the décision which Biologic to offer you.
It doesn’t matter how well or how badly somebody else reacts to a drug....the only thing that matters is how well you manage.....& remember too - some people react in weeks, but others take months, so do please take your doctor’s advice & approach the opportunity to be prescribed a Biologic drug with optimism not trepidation.
Sorry, didn't mean they are prescribed by trial and error but as the RA nurse said that there is still trial and error in which one will work best. Luckily, the consultant is working with haematology because of the rare NH lymphoma that my father sadly died of, which is the one cited in the literature. She thought it very wise that I informed her and worth seeking advice about. Probably nothing to be concerned about but good to put these issues to bed as it were.
I had my f2f today with my rheumatologist regarding biologics but I've to go back in 4 weeks time for a second assessment. So I got a lot of bloods done today and xrays of chest, feet and hands. She also told me it can take 3 months for funding so it would more and likely be November before I start them. Like you I'm quite anxious about starting them but methotrexate and sulfasalazine combined just isn't helping enough and my rheumatologist is keen to get it under control. Keep us posted on how you get on tomorrow and good luck!
Yes I will and you too. Gosh! It is a long time to wait. I dont' think I could bear that as am struggling on just 5mg of Pred: as had to come off Leflunomide due to mouth sores. They will probably up the steroids tomorrow but have kept them purposely low so that they don't interfer with the assessment. x
I finished my steroids last week and my consultant told me to stay off them for the next 4 weeks until my second assessment. After that I can go back on them. It's like you say it's better for the assessment so the steroids doesn't mask the inflammation. I'm in northern Ireland so maybe the process might be different where you live?
Haven’t got your family history Rosie & can remember feeling anxious about starting biologics but the side effects from dmards I was on really impacted on my quality of life whilst not helping joints anywhere near as much. Good luck whatever you decide x
I know what you mean about conventional DMARDS. I totted up good/ bad/ and indifferent days over 4 months. Ended up with 82 good /indifferent and 54 bad on MTX. Tried HYDROX and LEF but ended up with a really bad mouth /throat!! Just want it to be this time tomorrow and no longer have to ponder. Thank you for your kind wishes.
That’s not great, can remember first year of this on them feeling utterly miserable ☹️ MTX and hydroxy for me: constant nausea, brain fog etc. good luck for tomorrow Rosie, hope rheumatology sort it for you x
Hi I've been on biologics for 7 months they are very good there is a history of bowel cancer in my family and Ive had stomach cancer for 10 years. Dmards were making me very I'll. I guess they weighed up the small risk concerning the cancer to the acute inflammation I had
I'm prepared to let them make the decisions my clinic is very good. Good luck xx
Gosh! Thank you so much for your response and I do so hope that they are helping to control your disease. I am sorry that you have suffered so much but it must be very reassuring to you that your team felt confident about putting you on a biologic. HelixHelix signposted me to a good article on this post which is reassuring about the risk of cancer. Many thanks for your response. Wishing you all the very best. xx
Stop worrying....I had Cancer & have been on a Biologic very successfully for 4 years,
Your rheumatologist will only offer you a Biologic drug which is compatible with your individual condition.
Initially cost was the reason funding was refused, but since the cheaper Biosimilars have come on to the market.....all Biologic drugs have been reduced in price.....as the Biosimilars were taking away their business.
Thank you. Yes, am coming to terms with biologics. Will nevertheless be dissapointed that I might qualify after such a short time since diagnosis. I am glad that biologics have been successful for you. Will be glad when I know more. Many thanks.
Thank you I will do. It will be good to have a f2f and have time to go through all the questions I have. So much easier than on the phone I find. It's the fatique and nausea caused by it that I find so debilitating. Here's to uncluttering my mind. How's it going for you? x
It certainly will be good to have the f2f appointment as you say. I had a telephone appointment last week and thought my next appointment next month was due to be f2f too but it has come through as a telephone appointment. I’ll confirm this with my team when I speak to them about my swollen ankles.
I’m still having a bit of a bumpy ride whilst waiting to see if increase in meds gets my flare ups under control. Sadly not much relief right now but am only 8 weeks into the change of meds so will remain positive and hopeful for another month. I am struggling a bit with anaemia at the moment too but hoping now on treatment for it I’ll start to feel more like myself soon. No quick fixes with RA is there but shall try to be a positive as I can meantime. Good luck for tomorrow and wishing you all the best for the appointment. You are always very well prepared and it sounds like your rheumatologist is too so hopefully it will be a positive way forward to you tomorrow. I feel sure it will be. x
Hi Rosie. I am so sorry you are in this situation. I am afraid I can't help as I don't take Biologics but you will get help from others on here. Sending comforting love and hugs.x
I'm so sorry for you unfortunately these injections are the only one thing that works for seronegative arthritis I'm on my 5th injection after others didn't work so far so good I'm on cimzia I hope you find your answer food luck
I also tried to avoid them but gave in when pain and swelling got too much. Was great for the first while then got respiratory issues with persistent cough but pain got too much so back on again with no flares for months but then colds sores which I had never had before then shingles. The consultant said the shingles could have happened to anyone but I went off for a while especially worried about virus. Continued working but pain again became an issue so decided to try fortnightly injections with good pain relief again but still some aches and twinges am deliberating going back on to weekly again they honestly do make a difference but has to be your descision
Biologics (eventually after trying 5 over 5 years!) Were a game changer for me. Before them I couldn't dress myself without steroid injections on top of the oral steroids I was taking. None of them had any side effects (seriously) and some only worked a short while. Head up, deep breath - this appointment could change your life for the better!
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