Managing Prednisolone Withdrawal Symptoms

It has been a long while since I last accessed my blog.  Have been extremely busy with work after my long medical leave.  My nerve pain on my left finger has healed but not completely healed. It's not painful now but I can feel that it's not normal as before.  Shingles has indeed left a bitter after taste for me. 

I have learnt my lesson.  It's important not to let your guard down especially when you are reducing the dosage of prednisolone.  Your immune becomes weaker.  Either your lupus flares up, got disease like Shingles or you suffer prednisolone withdrawal symptoms like fatigue.  When my doc reduced my prednisolone to 6mg in Feb, I got Shingles.  Then in May when dosage was down to 5mg, I experienced fatigue and my blood count showed low white cells and low haemoglobin.  Doc then up the dosage to 7.5mg.  It is really a hurdle to lower prednisolone let alone wane it off.  So besides taking my western medication and my vitamins dutifully now, I am also seeing a Chinese physician who has experience with lupus patients. I am taking Chinese herbs regularly to supplement and "wake up" my adrenal gland since it has been on "sleep mode" for quite some time.  The adrenal gland is responsible for the manufacturing of the "hormone" - corticosteroids.  But when you start to take prednisolone and in doses more than the body level - (i.e. anything more than 5mg is considered as "treatment' dosage since the usual body level is between 5-7mg) , this gland reduces the output and eventually shuts down the production since it senses that there are more than enough corticosteroids in the body.  And this is the reason that people will experience prednisolone withdrawal symptoms like fatigue if the dosage is suddenly or drastically reduced.  I am hoping this works for me, though it's kind of troublesome as I must make sure there is at least a 2 hours gap in taking western and chinese medications.   I am now on 6mg prednisolone for 2 months (and yes I think the doc is reducing it extremely slowly given my last 2 episodes) and also take my chinese medication (is in powder form and you mix it with warm water and drink it) twice a day.  So far, my blood test is alright and I just have to keep my finger crossed that this combination of western and chinese treatment will eventually help me wane off prednisolone uneventfully.

Nerve Pain Managment

Blisters caused by shingles have healed, but the nerve pain persists. Doc increased my Lyrica dosage to 300mg per day (4 tablets/day).  My left hand continued to be painful, numb with pins & needles all day long.  And when the intense shooting pain or aching pain comes, it can be so unbearable that I am reduced to tears.  No painkiller seems to help too so I tried ultracet again in the night but by taking half a tablet instead of one.  I was hoping that it does not cause nausea but may help in reducing the pain at night. So far, it works - while it does not completely reduce the pain, it has helped to reduce the pain intensity.  I felt more tired the next day but at least I did not throw up.  Doc also asked me to increase my prednisolone to 15 mg per day for a couple of days and then reduced it to 10mg for the next 5 days ( I was previously on my way to reduced prendnisolone and was taking 6mg).  He was hoping that this would help to reduce the  inflammation of the nerve and hence reduce my pain.  We will monitor the pain and see whether the medications help.  If not, the next step to manage my pain is to do a nerve block. Though it is simple procedure, but as it is carried out on the spine, it does carry some risks.  So I will rather not go to this route, but hope that the nerve will heal over time and the pain will go away.

Diet wise, I am pumping myself with vitamin B complex, C and E daily.  I read that celery juice is good in reducing nerve pain and I am thinking of trying too.  Though Doc has given me medical leave for another week, I am thinking of slowly easing back to work by working half day. I have no idea when the nerve pain will go away and so it is better I start work now that the blisters have healed.  I am hoping that work will distract me from the pain or the irritation of the pain and numbness of my hand.  And since I work half day, I can at least rest in the afternoon.  I also need to work to earn money to pay my medical bill!  I have since spent near to $1000 on this episode of shingles. Think more will be needed if the nerve pain persists.  Lupus medication and regular follow up with blood tests also cost me a few hundreds per month.  And as a lupus patient now, I also wonder what will come next.  So it is better to have money given I have limited medical insurance coverage now. There is a saying - "one can die but not ill". I fully understand what it means since medical costs is really an issue if you are not earning enough.  If not for this reason, I think I will quit my job and take a long long long rest before I think what to do next. 

Coping with Pains Physically and Mentally

I left the clinic feeling devastated and desponded.  Doc extended my medical leave and I have to be reviewed next week.  While the skin was healing, the nerve pain was not getting any better.  Doc told me to increase Lyrica from 1 to 2 tablets at night.  I asked him how long can I take this medication and he replied that some patients take it for weeks! Though I know it before hand that nerve pains can last for a long time as it also takes a long time for an inflamed nerve to heal, hearing it from my Doc somewhat made me feel worse.  I asked him why the pain was more intense in the night that I could not even sleep and he told me perhaps it was I am more aware of it at night while there were more distractions in the day. What a logical but lame reason I thought.  Anyway, I know at this stage, the Doc is managing my pain more than the disease itself. 

I came home and felt even more depressed.  The unbearable pain of my left hand and shoulder was still there.  But the mental pain of me suffering from lupus and then shingles, causing inconvenience to my family and colleagues, reducing me to a dependable and unpredictable person suddenly became too much for me to bear. I wonder what I have done that I deserved this punishment.  I wonder why my life was always full of obstacles.  I was so tired, feel like giving up and disappearing from this world and not care about anything.  I laid down on my bed and started crying non-stop. 

I felt much better after the crying.  Guess it was an outlet for all the emotions I was bottling up for weeks.  Illness can be a emotion draining journey for many.  But then, when I saw the images of the damages caused by Japan's earthquake and tsunami, I realised I am the lucky one who is alive here receiving treatment.  My pain will come and go. I just need more patient and endurance.  But for those who lost their homes, their loved ones and perhaps everything in all these natural disasters, their pains may never go away.

Lupus and Shingles (Herpes Zoster)

I have been very busy with both work and family.  And while I diligently and faithfully take my medication daily, little did I know I will be "gunned down" and be confined to home suddenly by this disease - shingles - in the midst of a busy working schedule!  It seems that people with lupus are prone to this disease.  Shingles or herpes zoster is caused by the same virus that causes chicken pox.  When you have chicken pox especially when you are young, apparently the virus does not completely leave your body when you recovered. Some virus hide in your nerves and become dormant like a volcano. When your immune system is weaken, as in the case of lupus patient who is taking steriods and immunosuppressant drugs for a long time and probably due to stress too, the virus will be awaken like a mummy and create havoc to your life and give your pains that can be killing, if not unbearable.

It all started with hypersensitive skin at part of my left hand. Then this hypersensitiveness slowly spread to my whole left hand and arm.  And I also experienced numbness, tingling feelings, pin and needles and ache on my my hand and arm.  As for my left shoulder, I have this stabbing pain and sometime piercing pain from the back of the shoulder to my heart area which can be unbearable.  I ignored the hypersensitiveness of skin initially as I thought it will come and go like those I experienced before.  But when it didn't and spread, I went to see my doc.  He initially thought that it is nerve pain caused by nerve inflammation - probably due to my lupus fare.  He increased my prednisolone to 15mg from 6.5mg and gave me a new medicine, Lyrica for my nerve pain.  I stayed home the next day and noticed that rashes appearing on my left armpit and hands.  I called the doc thinking it might be an allergic reaction to the new medicine I took.  The doc ordered me to see him immediately.  Just a look at the rashes, he concluded that I have shingles.  He prescribed anti-viral drug, valaciclovi and asked me to go back to same level of prednisolone.

I have innocently thought that shingles is like chicken pox.  I was so wrong.  The pain both on the skin and the nerve are unbearable at times.  Sometime when my spirit was weak and the pain was killing (even when I took the painkillers), I secretly wish I was dead so that I need not suffer the pains.  I told my doc about the ineffectiveness of the painkillers (panadeine) and when he changed to another medicine - ultracet - it was effective in reducing the pain but I have adverse reaction to it - dizziness and nausea which was so bad that I was reduced to staying in the bed for almost 2 days.   I guess there is no such thing as having the cake and eat it too. 

I am still on medical leave recovering from shingles.  Typically, it takes about 2 weeks to recover from it.  The pains are still there but the rashes are drying out. I have stopped taking ultracet and relying solely on Lyrica to cope with the pain although it is not very effective.  When I told my doc that shingles seems to be prone among the lupus patients, he said with a matter of fact that it is a "balancing act'.  While steriods and immunosuppressant drugs are used to control lupus flare, it inevitably that they also weaken your immunity and make you suspectible to disease like shingles. It is unfortuntable but it is definitely something lupus patients must deal with and somewhat come to expect it.  Personally, I am quite depressed over it, having to deal with 1 operation and 2 major illness within a short period of 1 year.  Not only my family suffered, my career and work is also badly affected by my "roller coaster" health.

Nothing could change the fact that I have lupus and my life will be more unpredictable with it.  But no matter what happen, I just have to take one day at a time, and live life to the fullest as I could since I do not know what will happen to me next.    

Living a normal life which may not be normal

Life is slowly going back to "normal" but deep inside me I know it is "not normal" as before.  Taking a cocktail of medication has become a new routine now.  Though still clocking an average of 55 hours for work, I know my energy level is not the same as before.... and even shopping which suppose to be a "therapeutic" event can be a tiring task now.  Tend to get infected by bugs and viruses easily since immune system is weak and probably due to immune-suppressing drug.....  Many times, I just feel tired, uncomfortable and sick but for no apparent reasons. It's a feeling but I find it difficult to explain and express it to others.   For others who do not know what I'm suffering from, it is probably my excuse to be lazy....   but even for my hubby who is very understanding and considerate, I think it is difficult for him to comprehend why I am fine a while ago but may suddenly feel unwell and tired all of the sudden.

Just like my hair loss problem.  It could still be very bad a while ago, but all of the sudden, it stopped with no apparent reason and started to go new hairs. Not something I groaned about but it just goes to show that things are pretty unpredictable for me now.   And now I am left with a new and unused wig made of 100% human hair.  Wonder I should put it up for sale now :))     

Viewing Lupus as a Positive Life Changing Event

I somewhat believe things in life happened for a purpose.  But as we are always forever busied ourselves in this world with so many demands and so many distractions, we do not always discover what is that purpose that certain things that happened to your life are trying to tell you.

Knowing that you have an unpredictable chronic illness like lupus can be a devastating blow to many. 

For me - it slows me down at least for a while - it let me discover or reconnect with many aspect of life - warmth, love, priorities in life, reading - to learn about many things - impermanence of life, diet, ..... and of course writing,  Things that were lost when I buried myself with the day to days demands at home and at work.

At least compared to the past, I am now more aware and appreciative of the things that happened to me and my loved ones - that's being present which is most important thing.   I should not delve in things that have passed and worry too much about future that has yet to happen. I need not wait for all conditions that I have set to be happy to be happy. What is matter most is the present.... and I should always enjoy my time with my loved ones. 

Without lupus - I suppose I would continue my life without much reflections  -  not with a life without a more meaningful purpose. 

Fear of Hairloss

It has been a crazy month since I went back to work in early Oct.  Things and issues just cropped up continuously.  While I tried to take things easy, it could be tiring at times and I also did not get enough rest.  Blogging has take a back seat for a moment. 

Doc increased my Azathioprine dosage to 100mg while he reduced my prednisolone gradually.  But then, not sure whether it was lupus flare due to stress (dealing with issues and office politics!!!) or not enough rest or due to increased dosage of azathioprine, I started to experience severe hair loss in the last 2-3 weeks.  For a person who have thick hair, watching your hair thinning at an alarming rate was not pleasant.  I told my hubby and kid that it was depressing to know that I might get bald patches in the near future.  But then, it was a case of no choice given my medical condition.  Doc advised that I should continue with the medication and the hair would grow back when the recent active lupus was better under control.....   Anyway, got to focus on what I have and not what I have lost.  So meanwhile am on active lookout for a nice wig.....:)).