Biologics question

[BlightyFiveStar]

Hi everyone

I’m looking for some guidance about biologics for RA after a slightly odd experience at hospital.

I had a review appointment as an emergency some weeks ago due to ongoing foot issues and feeling increasingly unwell. Hospital tested me for various things while there and it turned out I had the Australian flu despite flu vaccine so had tamiflu for that. RA related Feet issues unresolved.

Anyway at this appointment the rheumy nurse got consultant in to see me. I am on MTX for last year, was also on hydroxychloroquine but that was stopped due to some issues. The nurse had previously mentioned adding in sulfasalqzine but due to septrin allergy I cannot take it. My swelling and inflammation are much improved with the MTX but I have ongoing stiffness, pain and fatigue, and persistent problems with my fingers and toes. I am seronegative so normally nothing shows up in blood tests and a lot is based on what I report about how I feel.

So the consultant was looking at my joints and asking a hundred questions and asked what did I want, and what do I know about biologics? Did I want one of them? I was really surprised as I have the impression it is hard to get them due to funding issues and I don’t really see the prescription of what drugs are going to work for me as something I am qualified to judge or demand. I said I didn’t know and that in a way I am scared of biologics as from some things I have read maybe they can open the door to other issues. (As in, here we go experimenting with turning off a different part of my immune system, let’s see what happens - which I find scary.) I am not trying to offend anyone who is on them, I felt like this about MTX too. I was thinking partly of the MS warnings on biologics info I have read online as I have a neurological condition which is not MS but means I have already been tested for ms twice and am nervous of nudging my system in that direction.

The dr said it doesn’t work like that (opening the door to other conditions) but he didn’t really expand.

Anyway after this unexpected questioning I was given some new pain medication and the flu diagnosis sort of took us away from the RA discussion. Then in the letter to my gp after the appointment, copied to me, it said that we ‘discussed moving onto biologics ‘ but that I didn’t want them. Which wasn’t really what I thought we had done! The consultant didn’t explain options to me or whether he thought I should consider them or if I could feel better on biologics than I do now.

I wasn’t expecting the conversation to be like I can just request a certain medication, and I had not been expecting to be offered biologics, as I don’t think my condition is bad enough to qualify for funding. So I wasn’t prepared and in retrospect I didn’t take the opportunity to ask what his idea was, and why he raised biologics at all.

Does this seem strange to you? If you are on biologics, how did it come about? I have a routine appointment later in the summer (with a different doctor) and am wondering what to ask.

Many thanks

[AgedCrone]

. I've had RA for nearly 20 years & started RTX in 2016....so can on,y comment on that.,

Once you have agreed you'd consider Biologics either your Rheumy, or your Rheumy nurse will explain which of the Biologic drugs would be suitable for you.

If you have other health issues, some contraindicate certain Biologcs.

I chose RTX as two infusions two weeks apart twice a year seemed the least intrusive for me.

I've had a few hiccups, but I'm 90% positive & would not want to have to change now.

[BlightyFiveStar in reply to AgedCrone]

Hi thanks for the reply. Were you on MTX before that if you don’t mind me asking? If so, do you feel better compared to the MTX? And was there a trigger for moving onto a biologic? Thanks again

[AgedCrone in reply to BlightyFiveStar]

Yes I was on Mtx for seven years...very successfully then it suddenly went rogue on me around 2014....I was switched to Leflunomide only to lose a ton of weight - went down to around 50kg- the Lfl just took my appetite away.

Then I spent about 9 months with only Depomedrone injections & at that point rheumy said a biologic was the next move. Only two were available for me as I'd had breast cancer & the type of RA I have cut out others. I chose RTX purely for social reasons....I refused to have Mtx included in my treatment as I'd had such nasty side effects & my rheumy fixed that OK.

I have 2 infusions 2 weeks apart twice a year with blood tests & a consult with my rheumy nurse before each one......if you are lucky like I am the rest of the year you are free to roam! This year my May infusion has been moved three months later as I am still feeling the benefit of my last infusions. Some people are lucky enough to only need one set of infusions per year.......I am aiming for that!

I feel much better than I did towards the end on Mtx...but for most of my time on it I was fine ......a muzzy head was my main bugbear & virtually no aches & pains......until the last few months when I honestly thought I was going crazy.

I do tire easily, but after nearly 20 years I am content with how I feel. I know RTX doesn't suit everybody, so I consider myself very fortunate to be one of the lucky ones.

[Neverending63]

I was on mtx but had to come off of it due to liver complications. I tried sulphalazine and leflunomide but was allergic to then so was offered a biologic Benepali. I honestly think no I know I was at my best when on the mtx. Just don’t feel the bio is doing much but rheumy disagrees. So basically I was given bio because I couldn’t take any DMARDS.

[Downtime]

Hi Blighty,

Well I’m about start on Humira and my experience was just like yours. I’m seronegative too and I’ve been on Mxt for 3 years.

I’m better than I was at the start but it hasn’t been a real success. I’m ok though , I can walk around, which I couldn’t do for a while and my pain is controlled except for my hands and elbows which always hurt. Fatigue is still a really bad problem.

I’ve been having a few steroid depo injections which were great and made me feel normal but the last time I saw my Rheumy he said he thought I needed a change of meds and suggested a biologic. I was surprised as I thought he might add something else in but I know these are expensive drugs and from comments on here some people have problems getting them.

Made me wonder if they’re doing some sort of trial on seronegative patients.

Anyway I’ve had loads of tests and should be starting it in couple of weeks. See how it goes.

[helixhelix]

Some doctors missed out on communication skills training....this was obviously one of them!

But patient choice is supposed to be part of the NHS approach, so this could have been his approach to it? And health trusts do vary, so some areas are more open to funding those who "fail" on traditional DMARDs, and some doctors are better at making a persuasive case than others. So if he suggested it surely he most have thought there was a good chance he could get the funding for it?

Anyway, if you think biologics are something you would consider in the future I would write straight back to consultant to say so, and make sure that it is on your file.

I am in a similar place to you, and biologics have been raised as an option. I too expressed concern/fear and increased dose of MTX was added in instead about 8 months ago. This hasn't really worked, so last appointment (with a new rheumy) I sort of agreed to them. But I'm in France and the funding issue is not part of the process here, it's up to the doctor to say if they are right or not.

[Scottishlad]

If you are being considered for Biologics your condition is probably worse than you think. The aim of RA treatment is to control the disease reduce disability and the need for joint replacement.

In my case I started on Sulfasalazine, then added hydroxychloroquine and finally Methotrexate. Each time the RA was gradually getting worse before the new treatment was added. The Methotrexate reached the maximum dose and again the RA was gradually getting worse.

I was offered Cimzia and have not looked back since then.

Every treatment has potential side effects and we have to balance them against the benefits.

[annie0261]

I have had experience of my Specialist saying something different in her letters to my Dr . than was actually said. I put this down to the amount of patients she sees in a day, and deciphering her notes back however, I did feel the need to make my Dr. aware of this for future reference! Perhaps you should visit your Dr. and explain. It doesn't really appear that your Specialist offered you much information.

[juneann]

Be direct in your discussion and say something along the lines of...As this is your profession and field of expertise I trust your judgement. I therefore ask for your guidence and honest opinion on the best medication for my present symptoms and ongoing condition. If all else fails I tend to look them straight in the eye and choose the most likely relationship then say, if I was your daughter, sister, partner, mother...what would you suggest. I found that many years ago we really were in the hands of the specialists and often felt that we were getting the only or the most suited treatment for ourcspecific needs. We never got to question their judgement and we often never doubted it or thought of alternatives. I find now that many GP's and specialists deliver the facts, tell you what drugs are available, then ask you to choose. It's your body, your health and your pain - questions, questions and more questions if necessary until you feel that you have all the information you need and the choice of medication is a joint decision.

[sallygrain]

Hi

I was given the same options as you which I also found disconcerting - My rheumy said you can try the 4th DMARD after hydroxyl/methatrex/sulpha failed or go for a biologic and I had to choose at the time!- how should I know what is the best drug? I was expected to have done the research in advance!! It seems all the info out there has lead to a change across the board with doctors who now can offer us a choice. I only feel good after a steroid but I know that is not a long term option and as friends have had good experiences with atenocept I have agreed as I want to move without pain again!! its scary all this side effect but I am hopeful

We should be grateful for the lovely sun at last

[BlightyFiveStar in reply to sallygrain]

Yes that sounds similar- when I said I don’t know, there are so many biologics, the consultant said they now get patients coming in who have researched them all online and request a specific drug. But I’m not a scientific expert! And I cannot see all my test results on their hospital system. So I find it a bit surprising