Surprised nobody here is taking infliximab? - Behçet's UK

Behçet's UK

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Surprised nobody here is taking infliximab?

MatthewBrog
MatthewBrog

Hi,

I'm new here, I have not read this whole year posts but I notice very few here are taking what is considered as the best treatment for Behcet: anti TNF alpha, best know as Infliximab or Humira and others.

Studies from the past years are giving an 80% of success (full recovery) with these meds.

If someone here has tried this treatment, please feel free to share you experience!

edit: as soon as I posted the forum showed me posts with infliximab in the title. I was surprised almost all of them are pretty old (4 to 8 years old!). My question still stands, if you wish to share you experience with it :)

also, Before getting access to infliximab, how hard was it for you to request such a cure? Was this from your doctor or did you request it? Thanks.

19 Replies
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I Was on colchicine alone for 2 months after diagnosis then they tried infliximab,I was on it for a year before being switched to humira as infliximab wasn’t controlling my flares. Despite being combined with prednisolone. The humira is also failing so I’m now waiting to see specialist and possible next treatment is plasma exchange. I’m on a few Facebook support pages and most of the patients there are on humira

Hi Matthew, I’ve tried infliximab for nine months and I’m afraid it didn’t help me at all. I have also been on Tocilizumab and Rituximab with no help for my symptoms. I’ve just tried a new biological called sekucinumab (Cosentyx), and it is the first time in over 10 years that anything has made a difference.

I’m afraid it’s not one size fits all. I’m in hospital at the moment and have been having a chat with some of the doctors. Basically with these biologicals they try, as someone said to me, “the sledgehammer affect” trying to knock out the parts of the cells that are causing the inflammation. At one stage my neurologist said they had knocked my B cells “into kingdom come” and yet I was still having very severe flares. I don’t understand the immunology concerned, however this time they have targeted something I believe is called IL17 and had much more success with me. It’s definitely not one size fits all and it is a lot of trial and error for each person to find the right treatment. Just be prepared for a long road of trial and error and also try and get a mindset of not getting your hopes up too high on one “miracle cure”. Rather get to know your own body and what helps and what hinders (lots of us keep diaries and take photos. I’ve been told that a determined, “half glass full” spirit is very important. Sorry for the cliches, Hope that helps. Lesley

Hi Matthew,

Been on Humira injections in the past with MTX injections also , this made me severely ill with reaction to it

Have been on Infliximab infusions every 6 weeks for last 2 years , but have had an horrendous last 2 months during which I've suffered a real flare in inflammatory markers and suffered 2 TIA'S (One in each eye) and have also got Uveitis in left eye .....have had eye problems in past but this is another level and something new again

Will prob find out in next couple of weeks if the Infliximab has ceased to work or if the infusions are to be shortened to every 4 weeks....depends on antibody rest results

Im sorry but there is no magic cure for Behcets , just trying to find something that helps control the many affects of this illness ......im lucky living in Wales as my Rhuematologist can give me access to these Biologics without having to go through COE'S

Good luck

Kev

Thank you for sharing your replies.

Actually my greatest fear is to lose my job. I am tired, very tired, and after losing my wife for this reason I now put all my energy to hide this condition to my colleagues and my boss. If I ever share my health issues to my employer I’m afraid I’ll get fired and lose everything.

How did you manage your condition at work? Did you tell anyone? If a treatment makes you worse were you off for weeks?

For info I suffer from anal bleeding for a decade, bad sleep, constant tiredness (I guess the worse symptom for personal/social and pro life), dizziness, headaches, mouth inflammation (blood when washing my teeth), tinnitus and pain in the neck. All I ask at first is getting my energy back so I can stop to pretend at work. I’m 35 by the way and live in France.

delew
delew in reply to MatthewBrog

Hi Matthew, unfortunately it is hard to hide. I apparently have had Behcets my whole life and battled going to work for over 30 years and now, I just can not do it anymore. I have been on leave from work since August 2019 and now the Drs know what is wrong with me, they are not willing to send me back and it looks like I will have to retire medically unfit. I am fortunate to be running a small home business so I am still able to contribute financially to my family.

Battling through work while being unwell has resulted in me being taken to hospital by paramedics from work... one for 2nd degree heart block, 2nd for a TIA, 3rd for a stroke and 4th with Uveitis both eyes which resulted in vision loss.

My drs have told me to accept my limitations and embrace a different work life what ever that may look like.

I am currently on Humira, methotrexate, naprosyn, colchicine, heart meds...... the list goes on..

MatthewBrog
MatthewBrog in reply to delew

Ouch, hard story. 30 years without a proper diagnostic and while still fighting to keep working, someone at Hollywood could probably do a film about that.

What a determination you have.

I hope those meds are helping you / will help.

lesleyg
lesleyg in reply to MatthewBrog

Hi Matthew, just reading all these posts made me think back to a situation twenty years ago. You mentioned how tired you I were. I used to have home made frozen meals prepared. Then what I would do is go to work as a medical secretary, drive home, eat a healthy meal and climb into bed. I would almost be unconscious with fatigue, then get up and go to work in the morning. I had a very easy job at the time and used to put my head on the desk between patients! The two doctors I worked for thought I had migraines, but had no idea how bad the fatigue was. Be careful that your tiredness doesn’t affect your work. Better to retire medically unfit than lose your good name, which almost happened to me years later. Do you have any insurance connected to superannuation? This is the case in Australia. If I had been diagnosed with multiple sclerosis I could have got a very good payout to live comfortably on very easily. However because Behçet’s is so rare it was going to be a huge battle and the very good specialists I had made it very clear that they didn’t get involved in legal battles. I also knew from my previous work that doctors are quite wary of patients who have a leaning towards litigation. For that reason I chose to forgo battling for insurance and in time managed to get on a disability pension. I do have to say that the Australian Government is very generous, and if you are careful you can live quite comfortably. The biggest help is once you are on the pension the medications are heavily subsidised. Obviously all our situations are different I had to downsize and sell a house, but I can live as well as when I was working.

MatthewBrog
MatthewBrog in reply to lesleyg

Thanks for the feedback. However all I wish is to try treatments like coventyx etc. and feel better so I can keep on working, I honestly like my job and don’t want to feel « alienated ». I have different doctors who won’t agree with each other actually. They agree I have an autoimmune problem because that’s what my immune profile says... but none of them agree on 1 name for it. The more I read about Behcet the more I feel it is that one. My mouth has not a lot of ulcers, like one every 1 or 2 months, the problem is rather located in the bottom and they all argue about different names for it. Meanwhile my tiredness doesn’t mean to seem a lot to the doctors because I’m « there » talking to them and I don’t look « that » diminished to them. Sometimes I even wonder if I shouldn’t act like a living dead, it would help...

Dizziness and brain fog doesnt mean a lot to them as well. They trust machines, not what I says. I guess if I were lying to obtain something (what?) I’d have given up for years already, but they prefer considering I’m kind of stressed, it’s easier for them to cure. That sometimes even hurts more than the real desease to be honest...

lesleyg
lesleyg in reply to MatthewBrog

Hi Matthew what you related is exactly what I went through, doctors arguing, me not looking sick enough for them – being female on more than one occasions I was told to cry to get attention. (this was very difficult because I’ve had to be tough to survive until now). I never had many mouth ulcers - my problem is more with my finger tips ulcerating and neuro complications. Fortunately you do have things like Cosentyx to try whereas when I was diagnosed 10 years ago there was not much on offer then. All I can say is hang in there which was what was said to me and just try different things. The good thing about this website is you can have a bit of a whinge and we all understand exactly what you’re talking about. PS One old retired doctor said to me it doesn’t really matter what name they put on it, “a hole in the road is still a hole in the road whatever you call it”. As long as they have the right area of illness to start treating you.

Hi Matthew,

I was on infliximab four weekly for 3 years and then five weekly for two, I finished it in January this year (tailoring down quickly in the end 6-8-10) they checked my levels in my blood and eventually it was no longer working.

I can tell you though, if it helps, the fatigue does go eventually, just take it easy when you can, I worked full time throughout, it kills me some days and still now,but I rest when I can,that's all you can do, I never told my work,for years which I actually regretted, because three years in I was hospitalised for two montha and it obviously ended up coming out and they gave me time off for appointments and infusions without using my AL after and were incredibly understanding. I work for the civil service and they were actually understanding so I was so afraid people would think I was weak, not as capable etc, on hindsight this was ridiculous! It really is a freedom to have it out in the open, less of a weight you have to carry. Workplaces nowdays have to be more understanding or it is discrimination.

Good luck with everything and consider telling people. If someone had told me that years ago I would have rolled my eyes. But seriously, it's a freedom, it's difficult but it's nothing to be ashamed off, and your covered if anything ever goes bad. You can minimise it all too, that's what I do. But then their aware and you're carrying one less burden x

many thanks for the feedback :) !

Just curious, after infliximab, since it doesn’t work anymore, what are your plans for the future? Any new treatment in sight? Maybe another antiTNF would work for 3 more years?

I’m just starting with the treatments on my side since I was just diagnosed. My first treatment is colchimax (Colchicin). Meanwhile I have to kill al potential parasites in case I have to go on infliximab in the next weeks.

Has anyone tried colchicine?

Legomum
Legomum in reply to MatthewBrog

Our daughter has Behçet’s and is on daily colchicine. It can work wonders and def reduced frequency of her ulcers. You need to give it time to build up to the correct dose for you.

Hi Matthew. I was on Humira for about 14 months. For 12 of those months it was really effective and gave me back my quality of life. Unfortunately my immune system developed antibodies to it and I was put onto Golimumab, which didn't work. It's hard to keep working but if you get on the right treatment you should be able to carry on. Good luck.

Looks like we are very near, almost everyone has found something working at least for a few months. Let’s hope 2021 brings new discoveries.

lesleyg
lesleyg in reply to MatthewBrog

Hi Matthew, I’ve been told that doctors are feeling very positive for 2021. In some ways sadly because of this Covid crisis, but also so much research has been done they feel that huge advances are being made in our area of illnesses. The main thing is to try and be positive and hang in there. I’m sorry how you feel about your job - I was running my own business, looking back I had an inflammation of the brain and in the end was making the same mistakes over and over again, after having built a very good name for myself which was in distance education. I retired and after about a year managed to get on a disability pension (it wasn’t easy). I could have possibly claimed on insurance through my superannuation but I put it in the too hard basket. There is no way that I could’ve kept working although I did come good (relatively speaking) about two years after stopping work, but too late for my business and rejoining the workforce. I would encourage you to look into different ways of earning a living that aren’t so strenuous. Is there any chance of getting on a pension? There are degrees of this disease and some people can quite easily keep working whilst others just can’t possibly manage it. I hope I’m not sounding negative I’m just trying to show you the need to be realistic. Cheers Lesley

I am only newly diagnosed so only on the first rung of medication . I have been referred to birmingham behcets centre now yeah . I was given diagnoses of fibromyalgia 5 years ago but then skin went crazy and my mouth suddenly had to have teeth out ( even thought had never even had fillings) it seems tooth extraction can set it off x my rheumatologist diagnosed me after testing my blood for hl52 whatever it is xx just a quick reply and to say hello

Hi Matthew. Hang in there!

I was diagnosed with Behçet’s aged 24, when we moved to London after years of ulcers and then eye inflammation. Colchicine had not worked well for me when trialled by a Dermatologist when I was suffering at uni.

Under the Behçet’s expert, I started prednisolone steroid and Azathioprine after a big Behçet’s flare around 2006 and that made a huge difference so I worked full time, commuting into London and travelling the world.

Things only changed when I had vision problems in pregnancy and I hated having to suddenly go on sick leave at 24 weeks gestation, but it was advice I needed to accept and follow. After a year may leave I returned to work part-time just 3 days per week and busy with childcare at home the rest of the time.

Continues with same meds until big Behçet’s flare 5 years ago triggered by a viral flu illness (that my husband had been unwell with first). That illness led to me starting Infliximab infusions in June 2015 and I got my life back, returned to part-time work and being active, swimming my usual mile, cycling etc. I had to be honest with my employer and they were brilliant. I hated to use the word “disability” but for a while I was disabled by the Behçet’s and UK law offers protection with that label for those with chronic illness. When well, I know I distance myself from the term again because it is an invisible and rare illness and I know I look very healthy on the outside now! Occupational health and my Behçet’s team needed to work together to understand The illness and to know what helps and what support looks like. Eg For me working night shifts would not be good when on steroids and needing rest etc.

I developed antibodies to Infliximab after maybe 18 -24 months so then switched to Humira. Very handy as store that in the fridge at home and inject in my tummy every 2 weeks (so no trips to hospital as had to for Infliximab infusions)

Hope that helps!

MatthewBrog
MatthewBrog in reply to Legomum

Thanks for the feedback! Just curious: will develop antibodies agasint Humira just like with infliximab? I have just started colchicine and if I have to try an anti TFN it will be Humira my doctor said, mainly because it is way more convenient (no infusion).

Yes your body can develop antibodies to any of these drugs Humira / Infliximab etc. When I started Infliximab there was some theory about why starting that one first was better but afraid I cannot recall what it was! But convenience is very important for people’s lives and I would have to leave 2 hours to travel to my infusion site. But it was only 6 weekly so pros and cons to weigh up.

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