How many Lupus patients here have been offered biologics?

[Dragonfly4]

Hi folks,

As some know I had nearly given up fighting Lupus/RA and all the other diagnoses I have. Thankfully, a very kind member mentioned biologics to me. At 52, having been dx since 1989 and after umpteen operations and every medication I was told was available and have taken, I then challenged my consultant re biologics and was then passed straight over to acute medicine and within weeks have had my first two infusions of Rituximab (Truxima) due to reacting to every DMARD taken and being put on massive steroids.

My 2nd infusion was yesterday and all I could hear other patients talk about was rheumatoid. The infusion nurse, nice guy, was very aware of my Lupus... i asked him in ALL the years at my PCT that he has been doing the infusions (over 5 years I believe) he had only had TWO Lupus patients, one being me. I was absolutely gobsmacked.

I am struggling to understand why after all these years I was never offered or even knew about biologics and it took me to a very bad place in my head of stopping all medications. I have deformed hands, 6 major surgeries on both feet with my right foot fused and various other ops and now awaiting hand ops to cut all tendons... i.e. LUPUS ops not RA.

I contacted the hospital today and am asking for statistical info under the Freedom of Information Act of how many patients in my PCT have been offered rituximab or benlysta (my PCT does not allow Benlysta use!) since biologics have been licensed.

I am wondering if any of the kind folk here can tell me if they were ever offered biologics for LUPUS and if so, which biologic?

I won't know if rituximab is going to work for me yet, it's now a waiting game... but knowing how close I came to stopping all medications and letting nature takes its course, I feel I need to find out if Lupus patients are even being offered a possible solution. Yes, I have chronic RA... but they are treating Lupus as my primary amongst the other dx's I have. Had I not been told about biologics... well, who knows what may have happened and I don't want anyone else to feel the despair I found myself in.

I believe it is a postcode lottery and a consultant lottery for which meds we are given and it doesn't sit well with me.

I feel pretty grumpy right now and so tired after these infusions and also awaiting brain scan due to horrific headaches, so I'm sorry if this comes off as grumpy and abrupt. I jut don't want anyone else to feel the need to give up.

So, if anyone is prepared to let me know if they have been offered any biologics for LUPUS, I would be most grateful. Thanking you.

[Bacardibabe76]

Hi.

I have never been offered it, just dmards. I am in a drug trial via guys hospital tho.

All the best

L x

[Dragonfly4 in reply to Bacardibabe76]

Thank you L, wishing you the best with your trial. I'm still awaiting definitive confirmation of APS (it's like getting sticky blood out of a stone to get an answer) whilst my headaches are horrific. I do wish you all the best and thank you for your reply. x

[Hidden]

I know of a two people who take Rituximab for Sjogren's but not for Lupus. I'm guessing that this is partly because it's thought to be more effective for RA, and possibly for seropositive Sjögren's and associated NH Lymphoma, than for Lupus perhaps?

A helpline BSSA person explained to me that it's all about the B and T cells? I do know many who take the anti TNF drugs for RA. Sometines I despair too because there seem to be so many drug options for people with RA compared to those with Lupus or Sjogren's? I'm the only person I know of who takes Mycophenolate for Sjogren's and this really worries me - I feel like a guinea pig! But I believe that Anti TNFs and Biologics can sometimes induce temporary Lupus so I'm guessing there's more to this than just the health economics perhaps?

Anyway I really hope Rituximab like magic works for you.

[bones-bones in reply to Hidden]

I take Mycophenolate for Sjogrens TT. 4 large tablets a day. It has really helped. I know someone on Ritximab and she is quite happywith it.. I also had a friend who was given it along with chemo for lymphoma.

[Hidden in reply to bones-bones]

Oh right sorry I thought it was for your MCTD BB! I don't really suppose the labels we land make much odds apart from enabling us (or obstructing us?!) from accessing the most expensive drugs that we may benefit from if we were only offered them! I'm on 3 large tablets twice a day and am back at the gp this afternoon to discuss the severe constipation it seems to cause at this high dose. I just had a phone consult with him (never seen him before although he's my official GP) - was hoping we could get this sorted out at a distance but he wants to see me and have a feel of my tummy before deciding how to "up the anti" with my "neurogenic dysmotility" - Ugh!

[bones-bones in reply to Hidden]

Well I had been chugging along thinking I had Sjogren's and taking the drugs when it was decided I have MCTD. Nothing has changed. As MCTD is an overlap disease it is definitely overlapping with Sjogrens...what else I don't know.

As you say the treatment for all these things seem to be standard.

Most of my Sjogren's group (about 8 of us )only take eye drops. I haven't really had any problems with my eyes. One has Rituximab ,one(me) has Mycophenolate,one (me) has Hydroxychloroquine. I am the only one who sees Dr Price. You're definitely not a guinea pig for Mycophenolate !

One has developed Lymphoma.

I am seeing another Consultant in a teaching hospital in October so it will be interesting to hear what he says. My GP says if I don't like him to go back to Dr P.

The journey to see Dr Price is getting a bit much but we'll see. Meanwhile my very good GP is retiring so it's all change.

I've been taking Mycophenolate for 3 or 4 years now and haven't had any problems. I was given Azathioprine but it really upset me. I have a huge number of drugs I can't take which seems to be pretty usual.

Have you sorted your throat problems now ?

[Dragonfly4]

Thank you Twitchy, you were kind enough to help me a few weeks ago and got me asking questions.

I was informed by my previous consultant I would not be able to have antiTNF or benlysta and when I saw the new all signing and dancing Acute Medicine Lupus consultant he confirmed it... and though I am just a patient and we all are unique to our diseases, it bothers me that lupus patients do not seem (certainly in my PCT) to even be given the option of biologics.

I simply don't understand it when there are such good (and some pretty darn scary) reviews of the biologic. I am praying it will work for me... can't say I've noticed any difference in the last three weeks but know I have to give it a few months.

I am going to proceed with the freedom of information act to see how many lupus patients have been given this treatment in my PCT. The man I spoke to at the hospital who is there to help me word the questions correctly and to take out the personal feelings, was immensely kind and more than happy to assist, even to the point of saying he could understand my frustration of so many ops and medications over all these years when the rheumatoid patients I heard talking in the ward were saying they have been on rituximab for years and years. I am RF positive, have antiDsna, antiAna, all Lupus and RA markers, vasculitis, ankspondy, etc... yet had never even been told about this medication. How many more patients like me are out there not getting the possible treatment they could, becoming more deformed, more ill and to the point of giving up? Ha, that's a rhetorical question... one I will be putting to the PCT if I get the chance. I may be a hermit and recluse, but I am so frustrated... I've had this for so long, why did I not know about other medications!!!! Heck, am I grumpy and I cannot even sleep now.

Thank you for your reply, I really appreciate it. Wishing you well with the myco... sadly that was my last med and it did me damage but I know it works for many. Good luck Twitchy. X

[Hidden in reply to Dragonfly4]

I do understand what you are saying (and how angry it makes you) D4. I feel very much the same way about IViG infusions for my form of Sjögren's. I have felt this way ever since sitting wedged between two people having their infusions in the day room of a neuro ward for their rare forms of inflammatory neuropathy. One had a finger that was numb and the other had a leg that was full of pins and needles. I was sitting there between them with a very painful widespread parasthesia affecting me everywhere - waiting for nerve conduction studies, brain MRI and a lumbar puncture - my only diagnosed and treated disease at the time being seronegative RA.

In the US and elsewhere my kind of autoimmune polyneuropathy would warrant skin and nerve biopsies and if positive then I would qualify for IViG too. This has saved several people on the Sjogren's World forums from their SFN progressing further and I was certainly far more severely affected by a sensory disorder than either of these them as my lumbar puncture and brain MRI confirmed. Added to which my Autonomic Dysfunction is a huge issue which IViG infusions might help far more than Mycophenolate - which is merely adding to the neurogenic GI problems I'm sure!

But because Sjogren's doesn't meet the very strict criteria for IViG here in Scotland - and because my neurologist isn't proactive about getting my SFN confirmed by punch biopsies - I'm told that, if the Mycophenolate doesn't work out tolerance wise, there will be no further treatments offered apart from wretched antidepressants or anticonvulsants! I get hopping mad about this too! X

[Dragonfly4 in reply to Hidden]

Yep, the frustration is huge, especially when you're having seronegative results... which does NOT mean one doesn't have RA. I have positive markers for every damn thing which is why I'm pretty annoyed having dealt with this for 28 years and once I decided that I'd had enough of living like this with every DMARD causing either severe GI problems, throwing out my LFTs, or lack of efficacy, and having come to terms with my previous consultant telling me there was nothing else they could give me... had I not come on this forum, I doubt I would ever have known about rituximab. I must have met the criteria many moons ago and yet it was me then telling them that i had recently heard of biologics.

I didn't have to go through any panels, nothing... I saw a new consultant on 1 June 2017 and had my first infusion 18th July (I was offered it immediately I.e. the next week), but wanted my partner, who is abroad, to be with me. That is why I feel angry... how many other patients like me are not being told of this treatment? It is bonkers. It makes me sad to hear you too are being told that your current meds are basically your last options.... wrong wrong wrong.

I did delete some of my first post because I felt wrong saying it.. but... here goes... I cannot tell you how annoyed I was to see other patients having the same treatment as I was for RA for many years, when they had no deformities, surgeries etc etc... of course, I'm very glad for them that they do not have the problems I have, but why in the heck have I had to go through that. It simply does not make sense to me.

I will be very interested to see what the FOI Act information tells me on how many lupus sufferers have been offered biologics in my PCT... at a guess, I'd say I am one of the rare ones. Yes, that makes me fortunate... but if I'd not been on here... my lifespan could be significantly decreased. It makes me mad as a box of frogs not only for me, but for so many others like me.

Do keep strong and do keep challenging your consultant, PCT ... do keep talking too because I thought I knew so Kuching about my meds and treatment plans...yet I'd never even heard of biologics. Take very good care x

.

[Sarahd1609 in reply to Dragonfly4]

I was put on a biological called Enbrel to try and control PsA. Then after they realised that wasn't working, they noticed my lupus markers had altered from both being negative to both being positive so they won't say it as such but they think the biological activated the lupus markers. I haven't been given a confirmed diagnosis of lupus yet as I have PsA, Sjrogens and a few other conditions where symptoms mimic each other. I think some biological can make lupus worse so they are very limited. Don't lose heart. I've been on sulfasalazine, methotrexate, leflunomide, Enbrel , ustekinumab, and am waiting to see if using methotrexate, hydroxychloroquine and Secukinomab will work xx

[Silvergilt]

I am on biologics for RA because other meds were clearly not working, and my rheumy had to go to a panel and argue for them on my behalf. Biologics are very new, tbh - I think only been available for a decade, and we aren't even sure how many of them actually work. In the case of a few biological I think there are a few that have only just been cleared for various conditions. I understand your frustrations, but this medicine is very new, almost experimental - therefore the medical field is very cautious with distribution.i suspect because lupus is still a mystery to science they are cautious with offering this medication - again because no one really knows how it works yet or what long term effects are there is some evidence, for example, Biologics triggers hypoglycaemic symptoms but isn't recognised as diabetes (I have a lot of blood sugar crashes on these meds) but data is still being collated

Unfortunately cost also plays a part now due to the squeeze on the NHS budget in the UK and they are getting more difficult to prescribe so I do think there is a lottery element. If you don't have a rheumy willing to argue your case to the deciding panel, one might be out of luck. I hope this changes - perhaps as more information is gathered on how the medication helps, it will be more easily proven and therefore become more accessible.

[Dragonfly4 in reply to Silvergilt]

Hi Silvergilt, thank you your response. I do understand biologics are relatively new and I have to say, even though I have now had the infusions, I am still a tad wary ... my problem is I do have RA with a positive factor since 1990/1991 and SLE since my second month of pregnancy in 1991. That's why I don't understand if the patients I met in the ward at my infusions have been on rituximab for YEARS, and I have been with this hospital since 1998, why didn't my previous consultants recommend biologics? I know no-one can give me an answer here but the need to vent is all consuming.

I also recognise the cost factor and again, with the amount of meds I have taken over the years, all the operations I've had, the thousands of bloods tests.... I can't reconcile the cost in monetary terms but more importantly in my mental health terms and the effect this has all had on my family. My first born was/is HFA autistic ... life has been so difficult and I think perhaps it could have been made easier were I able to be more of a "normal" Mom and not constantly ill. I hope the rituximab works for me... and I know I am fortunate to have now been given the opportunity and even a tad of hope. if not, then my former plan to find peace with my illnesses will come back into play.

I wish you all the very best with your treatment and again, than you for replying... everyone's views gives me perspective and also makes me so thankful for finding this forum. Thank you.

[Hidden]

The criteria for Rituximab to treat Lupus.

england.nhs.uk/wp-content/u...

As the Biologics are so expensive they are 2nd and 3rd line treatments for all Rheumatic diseases with strict criteria. There is a commissioning statement for Ankylosing spondylitis, ANCA associated Vasculitis and Rheumatoid Arthritis as well.

Biologics have been around for over 10 yrs now ( Rituximab and Infliximab are off patent ). There is a good evidence base for their use, nothing to do with caution!!

I would encourage everyone to look up the clinical guidelines and commissioning policy to treat whatever illness they have and ask pointed questions of Consultants regarding the evidence base for treatment. 😀

[happytulip in reply to Hidden]

Thanks for putting this up Hidden ! I have failed 3 DMARDS. Aza caused pancreatitis, MMF did nothing and Methotrexate caused severe pericarditis. Yet I have been told I don't meet the criteria for biologicals. After reading your post I feel that I should do?

I remain on high dose steroids since 2015 and can't get below 15mg of pred without landing up in hospital with serositis or pericarditis. The trouble is my blood are always normal and I'm ANA neg with the occasional very mildly raised ESR. I have recently tested positive for the Mi2a antibody and a slightly low IgG. But reading your guidelines, unless I'm confused, I should be eligible for a biological?

I've been taken off all DMARDS and told to taper my pred and as I do I become less and less independent and more immobile with terrible muscle and joint pain.

Any comment? You seem to be very much in the know.

Thanks x

[Dragonfly4 in reply to happytulip]

Hi HappyTulip

The whole point of biologics (so my new consultant says) are to act as a steroid sparing treatment plan. Steroids cause so many problems and though they do the job, long term use is not a good thing.

Keep questioning your treatment team, stay strong. X

[happytulip in reply to Dragonfly4]

Thanks. Trust me, I am well aware of the long term risks of steroid use. I am desperately trying to get off them. My most recent posts have all been about me being taken off DMARDS and asked to taper pred with no back up plan. Its ridiculous.

Hence I have had a second opinion which has raised a few interesting topics. Steroids are awful but reducing them makes me immobile and I'm in such bad pain from inflammation at 16mg, I dread to think what will happen the lower I go without some form of immune suppression. I have a review in Oct and will be asking some very heavy questions.

Thank you for the encouragement.

[Dragonfly4 in reply to happytulip]

Yep, I hate steroids... thankfully so does my new consultant. I've taken so many steroids this year and I had said that, having been on them for 6 years straight since I got pregnant (25 years ago) that I would not take them again unless my life was in danger. I acquiesced on occasion and had many steroid injections and methylpred infusions in years gone by, but the last year it's been steroids all the way. I can't bear it... now I've got the methyl pred in me since the infusion on Tuesday so I'm hoping that will carry me forward for a few weeks. Thing is, they do the job... but I hate them with a passion.

I guess we have to take what gives us any quality of life. I've spent so many days in total agony unable to move - wishing the day away just in case the next day may be less painful. I'm a total hermit so I don't see people and with the weight gain and the mental effect steroids have on me, my home is really my only safe place. Rarely does anyone cross the threshold which suits me just fine. My quality of life is in my garden, my river at the bottom of the garden, my camera, my family and my partner when he can get home.

Do what you need to do to keep mobile and have some quality of life but most importantly, please know there are folks who will listen when you need to shout out.

Don't hold back on you questions to the treatment team in October... just try to ensure you leave with a plan set out clearly and don't let anyone fob you off. Last meeting I had, I took iPad, asked permission and then recorded whole meeting. Worked a treat, no backtracking! Best wishes.

[Hidden in reply to happytulip]

Hi happytulip,

If I remember corr cloy your case is complex and the diagnosis may be in doubt, did you ever manage to get Behcets syndrome ruled in or out?

I suspect it's your normal bloods that is the barrier to Biologics, especially the ANA.

I wonder if a second opinion from the likes of Addenbrookes would help? They have a world class Vasculitis and Lupus clinic headed by Dr David Jayne, as Behcets is a Vasculitis variant they see a lot of patients with that as well.

It took me 4 years, around 8 second opinions and an odyssey around the UK before receiving my diagnosis ( spondyloarthropathy with features of Behcets syndrome ). I am part of the Vasculitis UK helpline team, please feel free to get in touch if you think it would help. Sometimes talking over all the options can be very beneficial.

[Dragonfly4 in reply to Hidden]

Yep, I've reasearched all the criteria and been reading as much as possible. The criteria for SLE form is quite basic

bilagbr.org/documents/Ritux...

I too would encourage everyone to research and challenge the consultants.

My previous consultant actually admitted to me that she was part time, did not have the time to deal with a patient with my complexities and therefore referred me onto the Acute Medicine Lupus Clinic. Yet, she knew about biologics ... but she had never mentioned then to me until I brought them up! Hmmmm, grrrr.

Thank you for your reply and advice to others.

[weathervane]

Hi dragonfly, I have a diagnosis of primary sjogrens, part of my initial presentation was swollen lymph nodes. I was offered rituximab ofter trying plaquenil first and i am now in the middle of my 3rd course . I know iit is very scary starting new drugs in particular biologics but personally rituximab has given me my life back . It has not been a cure but it has made most of my symptoms more manageable.

[Dragonfly4 in reply to weathervane]

Hi weathervane,

The patients I met at my infusions all swear by this biologic. I don't want to get my hopes too high as I know if it doesn't work, I'm going to fall hard... but I will keep as positive as I can. There is no cure for many of our autoimmune diseases... but if something can provide some semblance of normality... then it's worth a try. I cannot even imagine what "normal pain-free" life is like... it's been so long, too long. Fingers crossed (well, ha, if I could cross them I would). Thank you and I'm so glad it's working for you. Long may that continue.

[Poshcards]

I have SLE for over 25 years. Earlier this year I was told that Rituximab might be next step and I was very nervous of having it but then my consultant said I didnt need it after all! So The Min hospital at Bath do go down that route but you have to get certain targets and points to receive it

[Dragonfly4 in reply to Poshcards]

Hi, keep asking. I had all DMARDS with little effect - keep asking or ask for reasons why you do not meet the criteria. Good luck and wishing you all the best.

[cillfred]

My situation with a biologic did not end well. I was giving myself injections of Humira (adalimumab) for 10 years and developed the "lupus like syndrome" I have RA and now thanks to the biologic i have lupus. Do your research on your biologics is my advice to you. I wish you the best!

[Dragonfly4 in reply to cillfred]

Hi cillfred, I'm so, so sorry you now have the induced lupus and I hope you have support around you.

I think this is one of the reasons I'm asking about lupus patients as it seems RA specific patients receive biologics and yet lupus patients don't seem to be given the information. I was told I definitely would not be given Humira because my lupus could get so much worse... hence the rituximab. Yet Benlysta is approved for SLE but my PCT does not use Benlysta.

Wishing you well and again, so sad to hear you have induced lupus now to contend with. Take good care.

[Dragonfly4]

Thank you for all your replies... will return later as I'm currently sick to my stomach and very tearful for no apparent reason (which happened after my first infusion) so not in a good headspace. Back later. Thank you.

[creaky]

I have not had it offered, I take Mycophenolate at present.

I was told by my orthopedic surgeon repeatedly that I should ask for it, but when I did I was told that all other treatments had to be tried first. He then more or less accused me of demanding it, and it caused such a personality clash that I changed consultant in the end. I think that he thought that I had asked the orthopedic guy to apply some pressure, which was not true.

I really don't care what treatment I have, just something that works would be handy!!

Hope that it works out well for you x

[Dragonfly4 in reply to creaky]

Thank you creaky. Myco caused me huge problems so I was at the end of my tether with all oral chemoDMARDs.

It's interesting you say about you ortho surgeon... that's one of the points I am trying to get across. With all the operations ... surely it makes more sense to go with biologics? I am awaiting hand surgery (both hands) which is more Lupus than RA, my tendons need releasing but I've said if they can't sort my 4th finger out which is at a right angle, chop it off, it gets in the way of everything and when swollen, hurts like heck. I was referred on 8th March and still not even got an appointment!

I would have thought the ortho surgeon has every right to have an opinion, even if he hadn't said anything.

Good luck to you with the new consultant, I hope he/she will make a difference.

[creaky in reply to Dragonfly4]

Sorry to hear that you are in so much pain, I hope you find something that helps soon 💐

[Maureenpearl]

I was offered Rituxamab over five years ago, however I could not get the funding for it I was told because the lupus has damaged my lungs (pulmonary fibrosis) they have not had any evidence to show it would work.

For three years my consultant tried to get the funding and each time we were told no. I have had all the drugs that's available but Cyclophosphamide was so harsh whilst it was been administered and only worked for about three months. The other drugs all had such horrid side effects that I just could not tolerate.

Two years ago I had a different Rheumatologist and attend a combined clinic with a Pulmonologist and together they decided to try again for the funding and we got it and I started Rituxamab June 2015.

I'm still using ambulatory oxygen and the last infusions I had just haven't done anything for me and that was October/November 2016. I was planning not to have any more but I have decided to have one more course and if no improvement in my general health that I may have to look for something else.

I must say after the first two courses I could do so much, I felt so well until it was time for the next infusions (seven months).

[Dragonfly4 in reply to Maureenpearl]

I'm so glad it worked for you initially and hope this next round will do some good. I simply can't imagine the feeling of wellness but I'm so hoping.

I wonder, if you wouldn't mind, could you let me know how your pulmonary fibrosis was diagnosed? My previous consultant believed the lupus had affected my lungs and I had spirometry and CTPA scan. Yet, no-one is interpreting the results and when I asked my GP last week, he said he was not qualified to interpret their results. I did start a thread about it but still don't know if my lungs are good, bad or simply ugly.

Not sure if this link will work, but if you have any info I would appreciate it.

healthunlocked.com/blf/post...

Good luck with you next infusion. I really hope it works for you again.

[Maureenpearl in reply to Dragonfly4]

I was very breathless for a while but I went to a christian event and I decided to get up and dance along with lots of other people and I had an awful pain in my chest along with breathlessness. It was very scary because we were away from home in Somerset.

When I got back I rang the hospital and ask for an appointment to see one of my consultant's team. I saw his registrar who then said you will have to be admitted because it could be a blood clot in your lungs.

I had a blood test (having brain fog now) can't remember the name but it's to check the oxygen in your blood and that was okay, no blood clot.

the next day the consultant came to see me on the ward and said the lupus has damaged your lungs (Pulmonary Fibrosis). All the other doctors had to listen to the sound in my lungs, so they could recognise the symptoms next time. It was off to X-ray and appointment for lung function test.

I think if I had another consultant they might not have recognised the symptoms.

[Dragonfly4]

My history

unleashingthewolfwithin.blo...