Biologics

[Blackwitch]

I have a hospital appointment tomorrow morning. I had to stop Etanercept (Benepali) due to side effects. If (and this is a big if) I get to see my new Consultant, he/she is likely to want me to start on an alternative. I know everyone is different but what causes you the least side effects? It’s sickness I can’t cope with. Are they likely to just go onto the next cheapest on the list? I really am dreading tomorrow. ☹️

[helenlw7]

I know this isn’t much use to you but I’m on my 3rd biologic (2 worked) and I didn’t have side effects from any of them.

[Blackwitch in reply to helenlw7]

Thanks for your reply. May I ask why you’ve been on three if you didn’t have side effects? Is the one you’re on now working better than the last two? I really didn’t want to go back onto biologics but I’ve been so much worse I don’t think I have any choice now. x

[KittyJ]

I have no side effects on Benepali, it’s been the best of all I’ve taken. Unfortunately what others experience will have no bearing on whether you will experience the same, also your consultant will have their own thoughts what you will try next and you may not get a choice in that. 🤞🏻 your next drug works well.

[Blackwitch in reply to KittyJ]

Hi KittyJ. I didn’t have any side effects for 3 months but as soon as the Benepali started to work I started getting eye infections, throat infections, swollen glands and rashes. I stopped for about 6 weeks on the advice of the rheumatology helpline but as soon as I started the injections again, all the same symptoms came back. I just had to stop again but they didn’t give me an alternative. x

[Blackwitch in reply to Blackwitch]

No, surely they can’t say, ‘sorry but you’ve tried three, so no more treatment for you’! x

[medway-lady]

Be careful I understand a rule change may man that only 3 biologics will be prescribed over a lifetime. Around here it’s definately the case so look it up and go from there. It can be easy to assume all side effects are down to a particular medication so have you a diary to indicate a pattern? I hope you get offered a JAK but now that’s not available to people over 60 or those with certain medical conditions in their history. So read up on all the biologics and JAKs and be guided by your consultant. I think Etanercept is great as it works well for me but LEF was by far better although had to be stopped because of another medical issue.

[Neonkittie17 in reply to medway-lady]

Hi Medway, What about the people who are on their 4th 5th 6th biologic, etc? Out of interest is this going to be national or just certain health trusts/districts? x

[medway-lady in reply to Neonkittie17]

I don’t know I just went to a local NRAS meeting at the beginning of the year and it was said there. So it could well be just my local health authority. It doesn’t affect me as not had to find out but it seemed to be implying that level of disease was part of the consideration. I just asked was that fair as my CKD and age limits my medications anyway. They said my level was severe and because of that and the CKD that it would be a bit different but it was to stop the try it for a week or so and give up patients. I’d imagine it’s about cost but don’t actually know. I’ve never given up a medication they’ve stopped them so to me it was puzzling as the MTX was stopped by consultant for acute hair loss, LEF was stopped for the AKI the Etanercept because of all the blood and the Abatercept because of drug induced severe eczema and so I was given permission to go back to Etanercept whilst they find out if it is that is the issue or something else. As the CKD is having more impact now, I know what happens next. But I’ve had the work up and it’s wait and see. Ironically the Nephrologist is happy to prescribe LEF as it’s used as a kidney medication although the Rhumatologist won’t. Devil and deep blue sea but LEF worked so much better than anything else I’d be so happy if I was prescribed it again. Xx

[Runrig01 in reply to medway-lady]

My Trust has a written policy that you can access online, stating it would only allow 2 biologics. In 2021 my benepali wasn’t working well, and the rheumatologist mentioned it at my urgent appointment. Thankfully once my shortness of breath was diagnosed I and treated, my pains settled and I was able to continue on benepali. The policy quotes a lot of evidence about why they reached the decision. I think with finances dire in the nhs, more Trusts will be doing the same, or tightening criteria for eligibility. I can’t take NSAIDs due to having a stroke

[medway-lady in reply to Runrig01]

I can't have the NSAIDs either as CKD and I think you're right it'll be a policy that spreads even if just a threat to stop some patients just giving up and might not even be used but it needs thinking about.

[bpeal1 in reply to medway-lady]

I’ve not heard of that policy. My daughter is already on her 4th biologic/JAK and she’s only 18!

She’s tried all of them for at least 6 months and most were changed by the rheumatologist as they wanted to try to achieve better control.

[medway-lady in reply to bpeal1]

Yes I understand but the consultant stopping them especially in a young persons case isn't the same as someone who gives up after a week or so looking for a magic bullet medication, when side effects do sometimes go. Some side effects can be fleeting and that isn't the same as an allergic reaction either, or one failing to work as they sometimes do. Your daughter will, I hope, be eligible for JAKs and that will be wonderful but for us older folk who can't be given them it might be an issue. I don't know but just saying it might be worth thinking about to make sure that we don't give up too easily. It could just be a threat never used but all the same if it's there it must be taken seriously.

[00424291 in reply to medway-lady]

What is LEF?

[medway-lady in reply to 00424291]

Lefludamide. It doesn't suit everyone but put may RA into remission for years. I would not known I'd even got it, despite it being classed as severe.

[Mozart150 in reply to medway-lady]

Hi just read your reply and I was 60 in July -I’m on Baricitinib -nothing else worked and this has kept me off Prednisone. I will mention this at review in December xx

[medway-lady in reply to Mozart150]

I have no idea if its the same everywhere so its good to ask. If you're given the ok then it might help others. xx

[Mozart150 in reply to medway-lady]

👍 xx

[JulieMBrown in reply to medway-lady]

Hi I was offered a JAK at age 64 last year. Filgotinib.

[medway-lady in reply to JulieMBrown]

Then if I were you I'd be very pleased as here its a definite no. x

[JulieMBrown in reply to medway-lady]

I’m very pleased and grateful. In 10 years I’d only been offered Methotrexate which has stopped working for my feet. Filgotinib has been wonderful.

[medway-lady in reply to JulieMBrown]

How did you jump the Biologics as if in UK ? you can usually only get JAKs after biologics. There is a treatment path DMARDS, Biologics the JAK's If you look up Gov.uk it will tell you avoid prescription to over 65 as increase risk of heart attack etc. Which is what they said at the meeting I went too. Very odd that so many variables.

[JulieMBrown in reply to medway-lady]

I’ve got no idea. I went to my consultant he scanned my feet which were full of inflammation. He felt that the JAK medication was the best fit with my methotrexate. I had the necessary blood tests, discussed the risks v benefits and was put on a statin to mitigate some of that risk.

[PianoPlayer11 in reply to JulieMBrown]

Re not giving medication over a certain age - a friend of mine was told she couldn’t have an expensive medication for migraines because she is over 60. She wrote a stiff letter to the consultant saying that this was age discrimination and she would have to consider taking the matter to court. She was allowed the drug. Mind you this happened after she had participated in a drug trial and I’m writing from Ireland - but it might be a tactic worth considering.

[sylvi]

I didn't have side effects as such, but every time i would get an infection so i would have to come of it while on the antibiotics. They would change the drug and the same thing would happen again. So between up we have decided i would not take them anymore . xxxx

[Blackwitch in reply to sylvi]

Hi Sylvi. I must admit I’m thinking along the same lines because I react to antibiotics as well. I just don’t want to be dropped by rheumatology because with all my other medical issues, they’ve all sent me back to the ‘care of your rheumatologist’. I always thought this wasn’t fair on him. I know there are so many worse off than me so I’ll just go and see what this new person thinks.

I hope you’re still recovering well Sylvi. Nic xx

[sylvi in reply to Blackwitch]

Thank you for caring Nic. I am doing ok from the surgery, but my breathing is still not good and i am wondering if it is my asthma or because i am over weight, either way it is difficult. The dr i saw last week is sending me to see the asthma nurse so we will see what she has to say when i get back from our holiday in the Cotswolds. At the moment i don't seem to care whether i go or not i hope come the morning i will feel alright about it. Take care love me. xxxx

[pammi2]

Its not you who decides what you have next? you cant say to them which cuauses less side effects, they will decide what THEY yhink is the nexxt one for you bearing in mind budget, it is always about money.

[Blackwitch in reply to pammi2]

I realise it’s not a pick ‘n’ mix but as I was given a choice to start with, I was just asking about others views on side effects in case I was given a choice. I do know it depends on funding so will just go with the advice I’m given today.

[smilelines]

my rheumatologist gave me a list to pick from. I picked cosentyx. No side effects other than a stuffy nose.

[J1707-]

I have tried 4 Biologics including etanercept didn’t get on with any . I have tried jaks and I’m on my second one (Upadacitinib) which thankfully is showing some good results first was barcitnib it worked well until my first covid vaccine then stopped working . No side effects with either but we are all different

[Brikel]

Hi I was on Benepali for quite a few years and no side affects. For me it worked very well and life became normal again, UNTIL I had a very bad bout of Pneumonia ( PCP ) . I was In hospital for a month.

It was decided by the Consultant that Benepali had taken my immune system away and was the cause of my pneumonia.

It was stopped immediately and I haven’t had a biologic since ( over a year ago ) and apart from a rare flair no ill effects I recently started to take Sulfasalazine to stop any flares and so far so good.

My point being maybe you don’t need a biologic to improve your RA .

I hope things improve for you, and you get what works for you. Brian

[Blackwitch in reply to Brikel]

Thanks for that Brian. I must admit I’m thinking much the same. I took Sulphasalazine many years ago and it was fine until my ALT reading just shot up above 600! Just about to leave for the hospital with so many questions. ☹️

[Mozart150]

Try not to worry. Everyone reacts so differently but it’s good nowadays that there are others to try. I hope the next one works and doesn’t cause side effects for you. Xx

[Seatgeorge]

I have benepali and don't have side-effects have to have a folic acid each day apart from when I take mtx.

[Blackwitch]

Back home. My new consultant was very thorough, actually examined me and because I have so many other health problems she’s going back to basics. Today I had blood tests, hands, wrists, feet and ankles x-rayed. She’s booked MRI’s with contrast for them as well. She’ll then do repeat MRI’s of my lower back afterwards. She seems to be treating me as a whole person and made me feel human again. She will wait for all test results before seeing me again. She was quite a breath of fresh air. Thanks for your comments everyone. Nic xx

[Deeb1764 in reply to Blackwitch]

It’s funny but I think that is what will be happening to me Too many complications with other health issues and they need to hit the restart button!

[Blackwitch in reply to Deeb1764]

Exactly. I have sero positive RA on one letter, sero negative on another (written on the same day) with Secondary Sjögren’s. I asked how did they know that it wasn’t just Sjögren’s? She said it’s a very fine line, especially with fibro, ME, FND and all the problems with my degenerative spine and rotational scoliosis. I don’t know what’s causing the pain, spasms, cramps etc at any one time so I just deal with them the best I can. x

[Deeb1764 in reply to Blackwitch]

I have leant how to deal with most of issues but sometimes I have to just let it wash over the body and be a sofa sloth and then restart in my head when I can. Just had 4 days like this and the body was screaming don’t do the walk I did it only a mile but got me out and moving again 🤪

[Blackwitch in reply to Deeb1764]

My problem is that due to my back (failed surgery in 2020 and rotational scoliosis) I can’t walk upright. I can manage a few minutes before my legs go numb and I have to bend my knees or sit down. I can still just about manage the stairs but sometimes on all-fours but not giving in just yet to a stair lift until someone comes up with a modern looking one. I know I’m being picky but brown & cream is not for me. 🤭 x

[Deeb1764 in reply to Blackwitch]

I know my mum has one they are ugly BUT a great tool. Mum lungs hate me when I walk but ………🤣

[KittyJ in reply to Blackwitch]

You can get different colours ☺️

[Blackwitch in reply to KittyJ]

Yes, you can Kitty but you’d think the design would have changed in 40 years. It’s almost as though ‘older people’ have no taste. It really annoys me that they can get away with it.

[Angels54]

I’m on Benapali, however I preferred Abatacept. discuss it with your consultant

[Blackwitch in reply to Angels54]

Yes, I saw her on Friday. She was new to me and a breath of fresh air. I’m having a break until I’ve had all the results of x-rays, MRI’s etc but don’t want to go back on biologics if I can help it. From last November to the end of January, I had one thing after the other and ended up with an awful case of tonsillitis. The antibiotics made things worse and gave me gastritis and then I finished it all off with gastroenteritis. Lovely.

[hatshepsut]

In the past I was on Abatacept, and was told that was one with less risk of I factions and side effects. It suited me well, until I had to change because of other health issues.

I hope you find the one for you!