The Wolf Within

Have you ever woken up one day, kept your eyes closed, lay in your bed and thought “What will today bring?”

Yep, I guess most people will have done that at some stage… I’m a little different.  I wake up each day, keep my eyes closed and think “Which part of my body will not be working as soon as I move?”

Some days I’m lucky and I can move my arms and legs and there is no immediate pain… most days, there is pain somewhere, but I never know where until I start to move.  Some days, I cannot move and the pain is too much to bear and it's not simply just pain, I feel ILL. Sometimes getting out of bed is difficult enough… stairs, well, mostly I go down them backwards, eating is difficult when my jaw won't work or the nausea kicks in, headaches every.single.day and and and… the fatigue never ceases. It’s overwhelming, it’s life sapping.

However, some days I can get up and all appears well – but during the day something always happens, some part of my body will stop working, sometimes when I least expect it.  One of the most annoying features of my illness is... I LOOK SO WELL.  It's hard to see inside someone but however one thinks I look, believe me, I don't feel well.   My outward appearance invalidates my illness when I see the look of disbelief on the faces of folks, that I am chronically ill.  That, in itself, is one of the most frustrating parts of my illness.

You see, living with many autoimmune diseases, you just never know which one is going to cause the most discomfort from one minute to the next, or even which one is going to be today’s culprit… and the speed at which this happens seems quite unbelievable to most – so most are unaware that behind the smile and façade of “I’m FINE”, the wolf inside me, the little white blood cells that eat me from the inside out, is lurking and picking away at me; you just can’t see it, but I can FEEL it.

I now need to write my thoughts – and as some know only too well, I am totally UNABLE to be concise.  Doing it this way, one has a choice to read or not to read – but the cathartic nature of writing is my outlet on the path I have now chosen to take. It could be a long journey, or it may be a shorter one – but I’m opting for quality not quantity of life – and with the support of my partner, my parents and my closest friends, this is my way forward.

I want this to be positive so I need to get any negativity out in the open in order to eliminate it – and my aim is not only to get through the next few months, or however long I receive this medication, using this silent medium and not having to actually “talk” out loud, I hope to give information and possibly assist others who live a similar life to mine, a life with chronic illness.

I don’t know how to blog – I guess I just get it out there and hope that I make sense, and perhaps those who think I have forgotten them or am not good at keeping contact, will have a better understanding that it’s not them, it’s me.  I know, that horrible cliché, but it’s true, it’s really not you, it is ME. I've nothing to say of interest as I choose a quiet life, I'm fairly irrelevant in the bigger picture but I do enjoy hearing of other people's lives so I check in on social media to see what's going on in the world with those I know and that provides me with smiles and, at times, perspective, but I rarely comment as I really don't know what to say.

So how did I end up where I am and what I’m about to embark upon?

Was it just bad luck getting ill?  I can’t think it really was because I am who I am because of it and I’ve met some pretty amazing folk who rescued me from toppling over in 2008.  Without their support, I don’t think I would be here today.  They know who they are.

Lupus, Rheumatoid - RHUPUS as my previous consultants called it – do not define me, I live with them though they often tend to define my mental health and the need to close off the world to live in a bubble where I feel safe.  My illness does hold my body hostage to daily routine or planning ahead. 

It’s taken me many years to learn to say “no”  to any invite when I don’t feel well or just because I know that if I go, I will suffer the payback.  Though I haven’t quite mastered it completely, I am able most of the time now, to say I won’t go and do things when I am not well enough or simply don’t wish to wear a social smile.  My Eleanor Rigby stays in the jar by the door.  Of course, there are very few invites when the bubble is sealed so tightly and my closest friends, they don't give me grief and do understand why I have become a recluse. I made that life, I am more comfortable living this life.  Even going to hospital is a trial for me - I cannot go alone; I am not comfortable using my walker in public, I don't want to use a wheelchair or have a porter push me around - but if I am with someone (usually my partner or Mom), then it's manageable.

Over the years, for more reasons than just my health, I have become agoraphobic, social phobic – I just can’t muster the social smile any longer that folk want to see or make small talk with people in the street or discuss ANYTHING to do with the past.  Therefore, I avoid everything that means I have to see people.   The fear of falling, needing help if I go out, the onset of IBS (you have no idea how AWFUL that is) or suddenly feeling so tired I have to sleep immediately, and that means immediately – well, for me, I now choose not to go out or leave my house, unless it’s to hospital, to a safe place where I cannot be judged or made to feel guilty, or if my partner is with me when he is in the UK;  if I crumble anywhere, he can pick me up and get me home. 

Folk say this is “sooooooo sad”… but I’m selfish and it’s not sad for me at all.  My garden, river, animals and my camera, which is my comfort blanket, keep me company and give me the modicum of peace I desire. I suppose one could say I don’t live by the rules of social engagement.

Now I have decided that I no longer wish to live by the rules of medical engagement – 28 years of medication – “take this, take that, now take this to counteract that med, and take this to help with the side effects of that med”… well, not now – I’m giving this one more shot and if I’m lucky and it works, then that’s a good thing, a great thing.  If it doesn’t, then pain management is what I’ll ask for – that and the support of those who love me and who will help me living with my decision. 

A couple months ago I had a conversation with a dear friend, MrKS, who has supported me over the years professionally and personally – I suggested if we both end up living until we’re 80 years young, then we’ll crack open a bottle of champagne.  I do hope to live a long life, I have so much to live for – but should this new regime of “biologics” not work – then I’m prepared to go with whatever happens next.  I’m not giving up or giving in to the illness – I’m a fighter but I’m just tired of tired and sick of sick and either brave or a coward, wise or stupid.  I’m no inspiration and not stoic – I’m just who I am.

Now, that didn’t sound at all positive, did it? 

Well, actually, it is.  I’m taking control now and that’s the most positive thing I’ve done in a very long time. Mentally, I am stronger. Mentally I can do this. 

It's not about what I can't do, it's now about what I can do and will do.

I realised, as my family have noted, that I have the great ability to push people out of my life, go into lockdown – but I have a method to that madness, it’s easier for me and probably easier for those in the long term. No-one wants to be around someone who gets sick all the time, I know that from experience of those in bygone days – it becomes a bore and inconvenient to them.  It is a bore. It’s hard to keep saying this or that hurts or pretend you’re OK…

and even worse, you end up not saying anything real in your life but just ask questions about their going’s on.  You sometimes go out and do what other's want you to do knowing that you've kept them happy but then I will then suffer huge payback in the form of flares and more pain.  Then you feel a fraud, like you’re worth nothing… and as I say, it’s not you, it’s me. I just can't be bothered any longer to keep everyone else happy.

When did it start?

Was it the ‘bite’ I got in Kakadu National Park that set off the dormant antibodies to start attacking my system a year later – well, that’s what the doc in 1989 thought… but who really knows?  It matters not because it’s happened and learning to live with it is what one must do, as do so many others who live with chronic illness. I would not have given up my 1988 travels even if I’d had a crystal ball beforehand because travelling was one of the most amazing things I have ever done and I was blessed to meet incredible folk around the world, one particular Canadian chap whom I am still in touch with after 29 years.  1988 was one of thee most wonderful years of my life.

I got ill in 1989.  It was early May, I was 24 years old and, 5 months prior, had returned from backpacking around the world for a year.   Little did I know that in March 1989, whilst skiing in France, the beginning of my illness was coming out of it’s dormant sleep – I couldn’t work out why I was so tired and achey and couldn’t ski as I had done before, or party like I had for a year – after all, I had just spent 12 months traveling everywhere; firstly skiing in Austria, then setting off on my own to Australia, sailing a Tall Ship in Australia,

travelling the whole way around Oz with just my backpack,

skiing in New Zealand, (Queenstown photo) and from South to North and back again...

Fiji (What A Wonderful World),

Hawaii, Canada East to West and finally around the USA before returning to Canada to fly back to the UK. 

So in March 2009, it didn’t make sense, the fatigue, the aches, the pains… why couldn't I ski properly, why didn't I feel right...I was exhausted.

It started with general fatigue, then a swollen left thumb, then a swollen right thumb, then to full blown sero-negative polyarthritis affecting my whole body within a few weeks and I was admitted to a stroke rehab centre in Godalming in Surrey.  It was agony - every breath was agony.  No-one knew what was wrong with me. I was told it was all in my head – psychosomatic – but that didn’t stop them filling me with IV valium, intensive physio, hydrotherapy and wanting to start electric shock therapy. 

Thankfully, before they could do that particular nicety, my then pre-husband and my parents decided to remove me from the rehab centre and eventually I found an amazing Rheumatolgist at St. Georges, Tooting, who took what was happening to me seriously. 

There, the numerous tests began but still no results that gave a definitive diagnosis.  Blood tests showed how ill I was – but a dx was still sero-negative poly arthritis and my first DMARDS (disease modifying drugs) were prescribed – D-penicillamine, Sulphasalazine, Plaquenil (now known as Hydroxychloroquinine) and the nasty steroids. 

Cutting a very long and tedious story short, it was not until I moved to Boston, USA in 1991 that I tested Rheumatoid positive (RF+).  I got married August 1991 and in January 1992 became pregnant. At 8 weeks pregnant, I became gravely ill, losing weight down to 7.5 stone and then the devastating news that I had Systemic Lupus with positive ANA and anti-dsDNA antibodies.  I was told it would be very unlikely I would be able to carry to term and most likely I would lose my baby.  I was closely, meticulously, monitored and at 30 weeks, I went into pre-term labour;  my parents, who had decided to visit us in Boston the same week, arrived to find me in Newton-Wellesley Hospital, on massive steroid doses and obgyn doctors trying desperately to stop me having my baby by filling me with Terbutaline and steroids to help the baby's lungs if he suddenly appeared.  I had severe gestational diabetes with the steroids and was injecting insulin 4 times a day, the doses rising as the weeks went on and the weight piling on thanks to the steroids.

I stayed on bed-rest for a further few weeks in a hospital bed at home but my baby wanted to arrive and nothing was going to stop him.  RDC was born by C-section after another steroid boost for his lungs at 36 weeks, a beautiful boy who appeared healthy, covered in fine golden hair and who melted all our hearts. 

My mother had stayed with me for an additional 6 weeks in the USA instead of returning to the UK after their vacation, whilst my Dad had been sent home with a sign around his neck for someone to get him to Devon, UK.  Little did we know my then husband would break his leg 5 days after RDC was born and Mom offered to stay as neither of us were able to drive!!!! 

4 months later we moved with work to San Francisco – and a new kind of life began.  It was an isolating and tough time raising a baby whilst my husband travelled around the US and me becoming more and more ill.  Despite living in a beautiful place and so close to one of the most amazing cities in the world, life was not a breeze with Lupus and a very young baby.  We did manage to travel around the Western US, Nevada, Utah – oh, Bryce Canyon – Grand Canyon, Yosemite when friends and family visited with us.  It wasn’t all bad – it was just hard work and very lonely.

Due to the huge steroids I was on, I had gained weight to 13 stone during pregnancy (Cushing’s) and was desperately unhappy which eventually resulted in RDC and I returning to the UK on November 5^th, 1994, with my husband following on at Christmas.  The amazing thing about California was having the most brilliant immunologists at Stanford University Hospital.  They were SO good – but my lupus was out of control and I needed family around and support to help so it wasn’t a hard decision to leave. The only real friends that we had met in our apartment block were the Cannells and they sadly moved back to Chicago, so leaving the USA, again, was an easy decision.

I returned to my house in Surrey and continued to see the Rheumatologist at St. Georges.  In March 1995 we moved to New Haw in Surrey and were trying for another baby but all attempts failed and we sought IVF treatment at which time the docs discovered I had chronic endometriosis with 7cm blood filled cysts.  2 laparotomies later, another round of IVF and I became pregnant with twins.  Sadly, we lost a twin early in the pregnancy and this time round, the pregnancy was much more difficult – I was in and out of hospital like a yo-yo and eventually a placental abruption forced the quickest C-section you can imagine and SJC was born at 34 weeks - our miracle child.  He was in NICU for 2 weeks, very poorly – but boy, did he have a good set of lungs. 

Despite the illness, the joy of my two gorgeous, miraculous children was a blessing that is still hard to comprehend, a joy and love beyond words.  I had everything I could ever have wished for. 

Over the next year we began to understand that everything in the world was not quite right.  Eventually, October 1998, for health and other reasons and the need of family support we moved back home to Devon.   We had the dream – beautiful family, beautiful house, life was good despite the illness.  I managed to get a little job at the primary school that my eldest son went to, my youngest went to nursery and my husband travelled to London for two days a week and worked from home.  This changed as the years went on where he started travelling to various parts of the world for his work.

I had 1 further laparotomy for the endometriosis (such a nasty condition) and eventually had to have a hsyterectomy in 1999 (best decision ever) and good rheumatologists to look after me – eventually though, the rheumatologists retired and I was left floating in a system without adequate care.  I remained on steroids for 6 years.

Over the next 8 years many things happened in our life which changed all our lives forever.  Many online friends and acquaintances know my story and it's now best left in the past – history that can’t be changed but that we have to live with and move onwards and upwards.

Eventually, the marriage broke down, it had been broken for years, for many reasons, but the final conclusion was a blessing for us both.  The marriage was over by 2006.  It was actually good to hear my ex-husband finally admit how much he had resented my illness over the years – I don’t blame him for that – it was what it was and was an inconvenience neither he or the kids needed.

The dream house was sold – I moved closer to my parents to a little house by a river and found love in a very mysterious way.

Over the years in Devon I had 6 major surgeries on both my feet and ankles and my right foot was fused.

From this: 

to K:- wires:

To this:

Further surgeries (5th)

Many, many other ops too and this is ongoing - awaiting hand surgery.

Moving on So What Now? Why the blog?

My diagnoses are:

Systemic Lupus Erythematosus - https://en.wikipedia.org/wiki/Systemic_lupus_erythematosus

Antibodies form in the body as a response to infection. When an invader (antigen) enters the body, white blood cells known as B lymphocytes react by making special types of proteins called antibodies. Antibodies are your body’s way of remembering an antigen; if it enters the body again, the antibodies will recognize it, combine with it, and neutralize it to prevent you from becoming infected. However, with autoimmune diseases such as lupus, the immune system can produce antibodies (auto-antibodies) that attack your body’s cells as though they were invaders, causing inflammation, damage, and even destruction. Jaccoud arthropathy (JA), is a chronic non-erosive reversible joint disorder that may occur after repeated bouts of arthritis. ... Joints in the feet, knees and shoulders may also get affected. It is commonly associated with systemic lupus erythematosus (SLE), and occurs in roughly 5% of all cases.

Rheumatoid Arthritis - https://en.wikipedia.org/wiki/Rheumatoid_arthritis

Rheumatoid arthritis is an autoimmune disease. This means that your immune system starts attacking your body’s own tissues instead of germs and viruses, which causes inflammation. Inflammation normally dies down fairly quickly but in rheumatoid arthritis it becomes a long-term (chronic) process.

Raynauds - https://en.wikipedia.org/wiki/Raynaud_syndrome

Vasculitis - https://en.wikipedia.org/wiki/Vasculitis

Antiphospholipid Syndrome - https://en.wikipedia.org/wiki/Antiphospholipid_syndrome

Ankylosing Spondylitis - https://en.wikipedia.org/wiki/Ankylosing_spondylitis

Chronic Fatigue Syndrome - https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome

Fibromyalgia - https://en.wikipedia.org/wiki/Fibromyalgia

IBS with severe gastritis - https://en.wikipedia.org/wiki/Irritable_bowel_syndrome

Trigeminal Neuralgia -  https://www.nhs.uk/conditions/trigeminal-neuralgia/

TMJ/TMD disorder - https://www.nhs.uk/conditions/temporomandibular-disorder-tmd/ 

Costochondritis - https://en.wikipedia.org/wiki/Costochondritis

Updated Nov 2019 -  Dysphonia - Dysphonia (MTD) diagnosed 2019– post cricoid edema and inflamed arytenoids, anterior posterior shortening and supraglottic crowding alongside evidence of aryngopharyngeal reflux; prolapsing of arytenoid joints on forced inspiration due to Rheumatoid.  Lack of saliva, mouth breathing, hard to swallow, talking/breathing difficulties – from January 2019 to present have been very ill. Referred to Joint Voice Clinic. Put on nebuliser with 0.9% hypertonic saline due to reduced lung capacity, along with oralieve, sprays, synthetic saliva to help with swallowing.

Reduced Lung Function

Recurrent Coldsores and Shingles

Left eye Cataract

Kidney infections all of life - was on Septrin from age 4-11 years old. Now have regular Nitrofurantoin antibioics.

Occular Migraines -  https://www.nhs.uk/conditions/retinal-migraine/

Updated March 2020 - Diabetes Type 1

(add on a total insomniac (a true insomniac), a little nutso, social and agoraphobia, hermit, recluse - life is so much more simple that way.)

Operations:

1988 - Tonsillectomy (in Sydney, Australia)

Wisdom Teeth Removal (USA)

2- emergency C-sections (preterm labour at 30 weeks for 1st pregnancy, placental abruption at 35 weeks for 2nd)

3 Laparotomies for chronic endometriosis

1 Total hysterectomy (well two would be a tad weird!)

6 x major right foot and ankle surgery, fused right foot

6 x major left foot surgery

Gall bladder removal

Biopsies – way too many to count (minors) - biopsies of tendons etc

BCC removal from forehead 

Major right hand tendon and joint surgery - 4 fingers, fused 4th finger

Second hand surgery December 2019 followed by sepsis.

Medications:

Nonsteroidal anti-inflammatory drugs (NSAIDs)

Over-the-counter NSAIDs are used to alleviate pain and swelling. There are also prescription-strength NSAIDs available when these are not effective. Up to 80% of lupus patients take an NSAID for symptoms.

Antimalarial drugs

Hydroxychloroquine, a drug used to combat malaria, is also used to treat lupus. Antimalarial drugs may reduce the risk of serious infection in patients with lupus. They may also prevent overactive immune cells from reproducing. Further, antimalarial agents interfere with inflammatory signaling of immune cells, which reduces the autoimmune response; fewer autoantibodies are produced, and organ damage is slowed.

Corticosteroids

Prednisone, one of the most common corticosteroids prescribed for lupus patients, reduces inflammation. Steroids are potent and tend to work quickly. Thus, doctors prescribe the lowest dose necessary for an effect and ease patients off steroid treatment to prevent side effects. Mood swings, face puffiness, and increased appetite are among the uncomfortable side effects of prednisone use.

Immunosuppressants

The most severe cases of lupus are treated with immunosuppressants. The drugs inhibit proteins essential to immune cell signaling pathways, thus blocking heightened immune responses. Azathioprine (Imuran, Azasan), mycophenolate (CellCept), leflunomide (Arava) and methotrexate (Trexall) are the most commonly prescribed immunosuppressants. In 2011, Belimumab (Benlysta) became the first new FDA approved drug in 50 years of research in lupus treatments. The drug is used to treat patients with active, autoantibody-positive lupus (systemic lupus erythematosus) who are receiving standard therapies listed above. It interferes with B-lymphocyte stimulator (BLyS) protein and reduces the number of dysfunctional B-cells in lupus patients.

New treatments

Unfortunately, many drugs used to treat lupus induce unpleasant side effects. These side effects can be as minor as upset stomach from antimalarial drugs or as major as increased risk of heart disease from NSAIDs. Researchers are studying new methods to treat lupus, but the lack of successful clinical trials hamper progress.

It is exceptionally difficult to develop treatments for lupus for a variety of reasons. The greatest barrier is the fact that there is no precise cause for lupus, which means researchers cannot select a specific protein to use as a target for inhibitors. Additionally, no two patients experience the same symptoms or flare patterns. This adds a level of complication to patient selection and endpoint definition for clinical trials.

<https://lupusnewstoday.com/lupus-treatment/>

Just a few of the medications I’ve been taking over the years where efficacy failed:

D-Penicillamine

Sulphasalazine (oral Gold)

Plaquenil (Hydroxychloroquinine)

Naproxen (3 ulcers later)

Prednisone/Prednisolone

Buccal

Buscopan / Mebeverine / Domperidone / Loperamide

Omeprazole

Co-Proxamol

Tramadol slow release

Zopiclone 

Diazepam

Amitryptaline

Gabapentin

Methotrexate (oral 10 years and injections x 4 with LFTs shooting into 200’s warranting immediately cessation)

Azathioprine – 1.5 years

Mycophenolate motefil – 1 year

Oramorph

Nitrofurantoin - regular kidney infections

Valacyclovir - antivirals.  This is VALACYCLOVIR which is an everyday prophylactic antiviral that doctors do not like to prescribe unless the consultant says it's a must do, due to the cost.  

Cyclozir - Antisickness meds

Diclofenac / Diclofenac Gel / Voltarol Emugel

Protopic

Folic Acid / Vitamin D

Faxafendine

Methocarbomal

Naseptin

Lidocaine patches

Benzydamine

Oralieve, Glandosane synthetic saliva for dysphonia, Gaviscon

Omran Compressed NE-C28P with hypertonic 0.9% saline Steri-Neb 2.5ml for reduced lung function

to name just a few…😣

Shingles three times in the last year.

Cataract in left eye due to long term steroid use.

The Summer of 2014 was one of the worst times of my medical life.  I suffered a very severe flare and could not walk, nor had any quality of life for many months.

In September 2015 I returned after the school holidays having been ill for the whole summer, to my part-time work at school and was forced out of my job – though I did fight them and won, but as I have a gag order on me, I’m not allowed to talk about that!  Suffice it to say, I have no contact with people who I had worked with for 10 years of my life and cut it off dead.  My colleagues did nothing wrong - I just had to walk away and keep my defence system in place. That’s my Modus Operandi! I’m not ashamed of that.

Unfortunately, with the latest drugs I was put on, I had great difficulty with mycophenolate motefil.  I started 2grams/day in June 2016 when the azathioprine ceased working, along with steroids, amytriptaline, diazepam at night and coproxamol...usually around 4-6 500mg day,  I hoped myco would work as this was the last of the DMARDS available.  My stomach disagreed.

NOT ONCE was I followed up either by phone or seeing the consultant whilst on the mycophenolate, to which I threw a hissy fit, mainly due to my continued deterioration, I finally saw the consultant in March 2017 as an urgent appt as I was losing the will to do anything and even more tired of being tired. I was upped to 3g/day myco, 40mg steroid a day (they truly are my nemesis but the only med that eases inflammation), amitryptaline 50mg and the diazepaem – and then I decided to take control.

With such a bad gastro reaction and having suffered nausea and other symptoms that are not for the feint hearted, for way too long, I finally, after many days and nights of soul-searching, decided to stop my meds now take my chances with the wolf within. I discussed this with my family knowing what it would likely mean.

I have taken poison after poison for the last 28 years and now, at 52, am going with quality of life.

I have oramorph to try and control pain and reluctantly have persuaded myself to take oral steroids (prednisolone) to keep me moving. I’ve had methyl-pred infusions in the past, had so many depo steroid injections, steroid injections into my joints, fluid drained from my knees, but right now, and having made this decision, I feel stronger mentally that I am NOW taking control of my life and meds instead of just taking the meds thrown at me and being pumped full of drugs when I don't even get followed up and clearly the meds were not working.

I have been on pretty much every medication available for SLE/RA over the 28 years. So I'm calling time on these nasty chemo DMARD drugs.  I tolerated them for about 18 years but eventually each one stops working and some I have serious reactions to… so, thanks to an amazing forum "HealthUnlocked" who were asking me why I wasn't offered biologics, something I had never even heard of, I was then referred to an Acute Medicine Consultant (who is my hero) am now going to start on biologics as a hopeful attempt to have some normality, even if they only work for a few months at a time– Retuximab/Rituxan/Truxima.  I’ll take a few months each year of feeling “normal” – it’s something I no longer know – so if this works, then my quality of life may change.  I no longer wish to exist through illness, I wish to live - even if it's a few months a year, that's more life than I have right now.

http://chemocare.com/chemotherapy/drug-info/Rituxan.aspx

Generic Name: Rituximab
Drug Type:  Rituxan is a monoclonal antibody. (For more detail, see "How Rituxan Works" section below).

What Rituxan Is Used For:

• Treatment of certain types of non-Hodgkin's lymphoma.
• Treatment of chronic lymphocytic leukemia (CLL).

Note:  If a drug has been approved for one use, physicians sometimes elect to use this same drug for other problems if they believe it might be helpful.

How Rituxan Is Given:

• As an infusion into a vein (intravenous, IV), over about 6 hours.  The time of the infusion may be shortened, depending on whether or not you have received Rituxan in the past, or how well you tolerate Rituxan.
• Medications may be given just before the infusion to reduce the occurrence of infusion-related symptoms.
• There is no pill form of Rituxan.
• The amount of Rituxan you will receive depends on many other factors, including your height and weight, your general health or other health problems, and the type of cancer you have. Your doctor will determine your dosage and schedule.

How Rituxan Works:

Rituxan is classified as a monoclonal antibody.  Monoclonal antibodies are a relatively new type of "targeted" cancer therapy.

Antibodies are an integral part of the body's immune system.  Normally, the body creates antibodies in response to an antigen (such as a protein in a germ) that has entered the body.  The antibodies attach to the antigen in order to mark it for destruction by the immune system.

To make anti-cancer monoclonal antibodies in the laboratory, scientists analyze specific antigens on the surface of cancer cells (the targets).  Then, using animal and human proteins, they create a specific antibody that will attach to the target antigen on the cancer cells. When given to the patient, these monoclonal antibodies will attach to matching antigens like a key fits a lock.

Since monoclonal antibodies target only specific cells, they may cause less toxicity to healthy cells.   Monoclonal antibody therapy is usually given only for cancers in which antigens (and the respective antibodies) have been identified already.

Rituxan works by targeting the CD20 antigen on normal and malignant B-cells.  Then the body's natural immune defenses are recruited to attack and kill the marked B-cells.  Stem cells (young cells in the bone marrow that will develop into the various types of cells) do not have the CD20 antigen.  This allows healthy B-cells to regenerate after treatment.
      

https://en.wikipedia.org/wiki/Rituximab

Rituximab, sold under the brand name Rituxan among others, is a medication used to treat certain autoimmune diseases and types of cancer. It is used for non-Hodgkin's lymphoma, chronic lymphocytic leukemia, rheumatoid arthritis, idiopathic thrombocytopenic purpura, and pemphigus vulgaris. It is given by slow injection into a vein

Monoclonal antibody
Type	Whole antibody

The side effects can be pretty bad – BUT not for everyone, I hope to be one of the fortunate ones – IF it works, then I may get to experience a few good months and then have further infusions 4-6 months later.  

Some people don’t have any side effects - so I have to give it a try, and even though I am terribly selfish, I do think that my family and friends should deserve that I be strong enough to give these biologics a shot. I won’t be taking it in combo with the other oral chemo meds that have failed, as my gastro problems have been too severe… I may change my mind once my stomach has had a decent rest and, as biologics are used as “steroid sparing” meds, I hope not to have to use any more steroids or at least the minimum required to keep me stable and pain-free.  I have already had a huge weight gain though I do admit, crème eggs are a guilty pleasure.

This blog will follow my treatment and thoughts – I expect to go up and down… but the thought of having a “few good months” … well, unless you have a daily debilitating chronic illness, a few good months can feel like a lifetime – I don’t know what it’s like to feel that anymore. I’m looking forward to it.

My infusions have been brought forward to 18th July 2017 – arrival 9.00 am and leave 4.30-5pm – all going to plan. My partner will be with me and I hope not to suffer any adverse reaction. I will receive an IV methyl-pred infusion first, then an anti-allergy (like piriton) infusion, then a 6-7 hour Rituximab infusion.  I’m told I'll be in and out of it during the day and feel very fluey and tired the following day where I won’t be able to get out of bed – after that, it’s left to fate – I may do well, I may not, I may have a reaction, I may not - everyone is an individual and everyone will react differently to these medications. 

21 days later, 8th August 2017, I will have the second infusion as above but it should take around 6 hours total if I don't have a negative reaction on the first – it takes 12-16 weeks for the Rituximab to really kick in and I must keep away from anyone who is poorly as my immune system will be severely compromised – and in 4-6 months, if I have improved, further infusions will take place.  I may get my few good months each year – that will be the most amazing thing and I am optimistic.  I'll be in a separate room with 3 others who are having the same infusions - we are kept together and have a specialist infusion nurse at the hospital I'll be attending.

I will be seeing my new Acute Medicine Consultant 4 months after my treatment - I'm told that he is "the best" and deals with the highly complex lupus patients - I've met him once and found him to be worth putting my faith in.  He is the first consultant in a long time who has given me "time".  My first appointment with him was thorough and lasted 1.5 hours: he went back all 28 years and every med I have been on, listened... but the best thing ever was - HE IS AS OPPOSED TO STEROIDS AS I AM.  I have never met a consultant who has not said "keep taking the steroids, now increase them blah" - he doesn't want me to be on steroids and the Rituximab (biologics) are used as steroid-sparing meds.  I have faith in this consultant - I believe he wants the best for me as an individual and will listen to my concerns and address them. Every nurse I have spoken to (so SO many over the last month) have all said how fantastic he is and... so far, so good.  I know I'm incredibly fortunate to be transferred to him though obviously, as he is acute medicine, I realise how serious my health condition now is.

However, my optimism very much comes from the support of my partner and close friends. My other half always tells me that I am not actually disabled, but that I am “uniquely enabled”.  He loves me despite my inabilities and in part due to my disabilities because it is part of who I have become and who I am now– and as we are both so completely imperfect, we balance each other rather nicely.  What I can’t do, he can. There’s not much he can’t do but we work.  Together, we're a team, and if at first we didn't succeed with a medication regime, we continued to try again. He lives and works abroad and though that may be weird for some – it works for us he and supports me every single day in spirit.  I do not feel alone.

I have so much to live for and perhaps Rituximab, a biologic treatment, may help me to have a better quality of life.  I would like to continue this blog so that others who live a similar battle of chronic incurable illness, who may feel alone as I have done in the past, may have the belief that something, sometime, might come along to help them live a better life too.  I hope this blog will serve to give information to people on this type of chemo – biologic treatment used for autoimmune diseases.  Soon I will find out if I get my wish to enjoy a rosier future.

This is my journey; it's an unknown path that I'm taking.  If this, or future blog posts, in any way assists anyone who has similar illnesses or if this can address any concerns about treatments available and their effects, either to inform or help anyone to make their own decisions as to whether this could be a possible path for them, then this can only be a good thing.

Tonight I am a little apprehensive, tomorrow could be a very big step to a brighter future - life enhancing.

©Naomi Clark

(excerpts from Wikipedia & chemocare.com)
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