End Of CYC (Cyclophosphamide) IV Treatment For Lupus Nephritis

Finally my CYC treatment (6 treatments) was over. It ended on 11 August 2014, but was the most painful one that I encountered in the haematology centre. Before the therapy start, the nurse will insert a needle with small tube into my vein for letting the medicine to pass through the bloodstream. Unfortunately, the job was not properly done and a "big bump" was formed on my hand (sign of back flow). She quickly removed the needle and another nurse assisting to re-do the needle insertion on my the other hand. During the process, I felt a sharp poky pain. I started to sweat as I'm phobia to needle and blood. I almost wanted to give her a loud thunder roar but didn't. I never encounter such a lousy skill before!

 

The Treatment

During the treatment, I was given 250mg Mesna first (for protect my bladder), followed by low dose CYC (cyclophosphamide) 500mg IV (30 minutes over) and finally  another 250mg Mesna (2 hours later after CYC) for every two weeks x 6 times.

The Side Effects
 

Each time when I completed one session, my legs become very weak. The impact will be greater on the 2nd and 3rd day after the therapy. My body felt weaker with stiff joints especially on my knee and spine. I can't bend down my knee and will hear a loud "cracking" sound when squatting. I can feel the tightness on my spine as if metal rod was tied onto it to make it tighter and stiffer and sensing of back pain at times. I just feel like I am "humpty dumpty" when the pair of "jelly" legs start to wobble.

Another constant night mare was hair loss. I have lost a considerable amount of hair and saw strands of dropping hairs on pillow, floor, bathroom etc. My boy could even notice the clumps of hairs on the bathroom's floor trap and had questioned me who its  belong to? I was quite sad with the drastic change in my appearance. I hate glancing at the mirror with that big moon face, thinning hair look and sign of bald patch at the back of the head. I had gained a lot of weight recently. My boy had noticed my fat tummy and commented that I have become fatter. I must say "thank you" to prednisone for pumping me up like a balloon. Not only my appearance, the medication had also affected my mood whereby I get irritable easily and my mood can swing like roller coaster.
 
I'm hopeful that I can return to the same old me soon and my hair will grow back in few months times. At this point, I am trying hard to step down my prednisone dosage (from initial 40mg to now, 18mg). At least, the good new is there were sign of improvement after these treatment. From the test result, it shows that no more blood  appeared in my urine and protein in the urine had significantly reduced to normal level. 

My nephrologist had commented that he will start me off next week with "MMF - the immunosuppressive drugs which I never try before. I am hopeful that the maintenance phase will turn out well and I can continue to eliminate prednisolone to "zero" phase. Another worry is the medical bill, hearing that MMF is an expensive medication. Looks like the hole in my pocket will get bigger!

 

New Episode For My Lupus

My new chapter of life living with lupus begin here.  I was discharged from hospital on 3 June 2014 for SLE Glomerulonephristis Syndrome, Class IV. It just comes unexpectedly and without much choice, I have to take whatever possible advise from Doctor to safeguard my kidney.

 

My rheumatologist referred me to see a kidney doctor as there was sign of protein and blood in my urine. My first visit with the Kidney doctor, he advised me to carry out a kidney biopsy to determine the extend of the inflammation in the kidney. I decided to get the biopsy done on the following week. So I went to the hospital on 29th May 2014, thinking that it just a simple outpatient procedure and I will be discharged on the next day. Doctor rang me up on the day when I was discharged from hospital. The test result showed that my lupus were very active. They need to put a quick stop to prevent further inflammation caused to my kidney. I was re-admitted on 31st May to start with chemotherapy  (Infuse with cyclophosphamide which is the immune suppression medication) followed by methylprednisolone on three consecutive days.

By hearing the side effect such as nausea, vomiting, hair loss, infertility, urination bleeding etc, resulting from the medication.  Its really make feel nervous and demoralise. Even since living with lupus (for 8 years), I am always haunted by hair loss problem. My hair is getting thinner and lesser each days even though I have tried many hair supplement to savage the situation but with no avail . I wouldn't know how to face myself when the side effect kick in? Definitely, I will be demoralise! My lovely hubby keeps assuring me things will be alright and he will stand by me throughout this bumpy times.

 

I have never expect Lupus to attack my kidney even though I knew Lupus is a disease that can attack any part of your body organ. At some point when there were signs of flares, my rheumatologists will at most add on the dosage of prednisolone to keep the activity down. It seem to me that all these years it was quite under control.

Except for last year, in 4th April 2013, I was once admitted to hospital for Pseudomonas chest infection with acute bronchitis and sinusitis. Probably because of SLE that have make me prompt to bacteria infection. For that past few months, I encountered a rough and tough rollercoaster ride. I thought things will turn out better after my recovery.

Well, I have never expected this coming one did a great impact on me. After going through the 1st chemo session, I feel extremely tiring, fatigue and with lethargic joints. My back aches at times and my knee seem to break into two parts and have no strength upholding my legs. I even have to rest on bed for a while to rejuvenate my energy to keep up with my daily activity. I am expecting more side effects to occur within the next few weeks. Not knowing how bad is it, I know that it will make me feel lousy and terrible!  

In fact, this June holiday, we had planned an overseas trip to Beijing with my parents, siblings, niece and nephews. It was my Dad's dream (who is 80 years old) to be able to visit Greatwall of China in his life. We wanted to fulfil his wish and decided to organise a family trip to Beijing. Well, the negative news is doctor advised me not to travel overseas due to my low immunity. I am pretty disappointed but still holding out hope for travelling with my family in this June vacation. Hopefully miracles do happen and I could obtain green light from Doctor to allow me to travel.

At this point of time, my worrisome will not make any difference, so just let it be and takes one step at a times. Live as per normal and hope for the best.

I am looking forward for a positive outcome as I knew that my two lovely boys need my accompany. I wanted to give them a complete family life till they grown up and I will try my best to overcome whatever obstacles occurring to me.

Never underestimate this little friend, Lupus! Listen to your body!






 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Lupus Flare???

Just have my routines check up every quarterly (on Monday) at Specialist Outpatient Clinic. Quite disappointing with my blood test result, WBC and RBC are lower than average and my ESR increased. I know it is quite difficult to explain what is the caused...perhaps due to stress, environmental, infection, etc...

I still remember in mid march (last month) , I felt my joint is killing me (fingers, knee, ankle, elbow...etc..everywhere pain), fatigue, lethargic..then encountered hair loss....really start to feel panic and worrysome. I have suspect my lupus may flare again..Then my fingers start to get swollen and the swollenness goes off and on at times. My daily activities was kind of affected as I can't move freely and steadily (as usual) and I cannot concentrate well. I feel bothersome because of the pain and achyness all over my body!

I was in hestitation to contact my doctor as I know all they can do is to put me back to steriods. It will be a long recovering process and the impact (side effect) for taking steriods. I decided to seek help from my chinese physician.  My condition did improve within the seven days. I started to feel better, no more joint pain, no more lethargic, can carry out my daily activities as per normal. I feel more ease and "normal". See the photo below. I was on steriods when my lupus flare. I put on alot of weight and pimples popped up everywhere in my body plus the "moon face" I encountered (side effect caused by steriods). Just cannot imagine, I was on daily medication for almost 5 years.

My "moon face"



Then, I discussed with my chinese physician two weeks ago to allow me to reduce the medication gradually. She has no objection. But then, I realised it doesn't really seem to work well for me. Start to feel fatigue and unwell again. It's a pain in the ass.....I really feel like..I am a "medicine bottle"...need to fill up with medicine in order to function properly. Without pumping medicine into my system, it cannot function properly. What a haywire and pathetic system! Have to go and visit my chinese physician this weekend again!  

Cheers!

Lupus In Silence

I have lupus (SLE) when I'm 32 years old in May 2006. I'm happy that my lupus has been quiet now. And feel grateful and contented for having a lovely husband and my precious 1 year old baby boy.

I am currently on medication and continues my routine check up at SGH (S'pore General Hospital) occasionally. I started with 20mg prednisolone and 200mg Hdroxychloroquine and had now been tapped to only 200mg Hdroxychloroquine daily. Of course, during this past 2+ years, there will be some up and down of my blood test result and doctor will increase my prednisolone when necessary. Thank Buddha! That now I can completely eliminate the intake of prednisolone which I feel can be harmful to our body if taken over a prolong period of time.

I felt so lost and worry when I was first diagnosed with Lupus. At one stage, I was in depression, frustation and pain and thus, indirectly would throw my frustration at my hubby. I encountered symptoms like high fever, swollen/achy joints and fingers, skin rashes, fatigue, hair loss and fingers turning white/blue when in cold, frequent flu and sinus. Needless to say, some side effects like putting on weight, "moon face" and pimples all over my body occurred when taken 20mg of prednisolone. Also, it can be so frastrating when you can't even move your body as it was aching and in pain everywhere. I feel so handicapped and hated myself so much.

I was once never believe in TCM (Traditonal Chinese Medicine) as I feel the recovery process is too slow and is too expensive to invest in it. However, my sister recommended me to try consulting a "sinsen" (chinese physican) because this sinsen had experience in treating a lupus patient. I decided to give it a try to act as a supplement to boost my body/immune system. I started to consult her in July 2006 (which was two months later when I was first diagnosed with lupus). I consulted her every week for the past two years even during my pregnancy in march 2007. Concurrently, I still continue my prescript medication from my Rheumatologist and frequent visits to my Rheumatologist and obstetricians. And thanks Buddha again! I successfully delivered a healthy baby boy without any complication and luckily my lupus did not flare at that point of time. I am grateful to all the doctors and medical staff that they had well taken care of me.

Right now, whenever I encountered some minors flus or sinus problem, I would prefer to take TCM than western medication. I personally feel that TCM is a type of natural herbs and will has less impact cause to our body. Though the process can be long, it does help to improve and nourish our body system and blood.

My life has changed and I have learned to control my temper and be less worrisome and will try to take things easy as I know "stress, frustrations, depression and unhappiness" somehow would be our enemy to cause lupus to flare.

I started to learn to be healthy by cutting down alchol, watch out my diet and do remember to take your medicine promptly.

I wonder has anyone with lupus do the same like me - "Western medication + Chinese Traditional Medicine"???

I love this quote:

"The secret of health for both mind and body is not to mourn for the past, worry about the future or anticipate troubles, but to live in the present moment wisely and earnestly."