Throughout this post I have capitalised words and phrases I think need explaining and linked them to Wikipedia so you can click for an explanation if you require it!
Most people who haven’t seen me for a while but who know I have Lupus comment- ‘Oh you look well!’ This is the common phrase encountered by Lupies! It is down to the ruddy glow one permanently carries, the ‘bonny faced’ look of having put on two stone due to the drugs etc etc and simply the fact that Lupus is one of those ‘invisible illnesses’.
For many, during the periods when the Lupus is ‘controlled’ one certainly can appear ‘well’, but a consultant telling you that they are happy with your blood results does not mean that you are symptom free- oh how I wish that were true!!! My consultant tells me mine are currently stable and largely within normal limits… however this is all part of a bigger picture and relative. They are not normal. One set of IMMUNOGLOBULINS is too low down to the drugs but he tells me not to worry. I always have blood traces in my urine, but he tells me not to worry, I wake every morning with painful feet and knee joints- I just have to put up with these. Some days getting up and going to the loo and having a shower is about all I can manage…
Conversely, on a good day I can ride my bike for 12 miles or more! Never a dull moment with Lupus!!
The problem is that each morning you wake up not knowing what sort of day you will have- it is so unpredictable. The only assurance is that if you want to do something special that requires ENERGY you need to plan weeks ahead and rest, rest, rest. I’ve probably mentioned it before but THE SPOON THEORY explains this fatigue very well. For me this is not helped by secondary FIBROMYALGIA which I think the doctors use to describe the ‘unexplained’ aches and pains!
Most people with Lupus survive on a pretty rigourous drug regime depending on the severity of the condition.
The following information is taken from LUPUS UK with comments added about what I take!
There is at present no cure for lupus but careful monitoring of the disease and a treatment programme with medication adjusted as appropriate enables the condition to be controlled, most patients being able to live a normal life span. Doctors will usually only keep the patient on high impact medication for as short a period as possible.
Non-steroidals, Aspirin etc – anti-inflammatory drugs (NSAIDS), used for patients who suffer mainly from joint/muscle pain. Aspirin, heparin or warfarin may be prescribed in the case of patients needing anticoagulation treatment. For more information go to:
Medicine Guides for blood clotting Medicine Guides for pain
I AM UNABLE TO TAKE THESE AS EARLY INDICATIONS SHOWED THAT THERE IS THE START OF KIDNEY INVOLVEMENT SO ANTI-INFLAMMATORIES ARE OUT!
Anti-Malarials – these are of help in patients with skin and joint involvement and of some assistance with fatigue. The drugs may be sufficient for patients with moderately active lupus to avoid using steroids. Hydroxychloroquine (Plaquenil) has anti-inflammatory properties, some sun-protective features and gives some protection against clotting – mepacrine is also used.
I TAKE HYDROXYCHLOROQUINE, AS AT DIAGNOSIS I WAS SUFFERING FROM THE CLASSIC DISCOID RASH AS I HAVE SHOWN YOU BEFORE! THIS DRUGS ALSO HELPS WITH THE PAIN TO SOME EXTENT
Steroids such as prednisolone have been vital in the improvement in lupus care and in some cases are life saving. They have a profound effect on inflammation and suppress active disease. The dosage depends on the severity of the symptoms. Once the disease is under control the dosage might be reduced gradually and/or it might be possible for the patient to transfer to other medication. The side-effects of steroids are well-known and include possible weight gain, muscle weakness, and over time the possibility of osteoporosis. For more information go to: Medicine Guide for steroids
I WAS ON A HIGH DOSE OF PREDNISOLONE AND AFTER THREE YEARS HAVE FINALLY COME OFF IT! DURING THIS TIME I HAVE PUT ON TWO STONE IN WEIGHT ABOUT WHICH I AM VERY UNHAPPY BUT ONE HAS TO BALANCE THE HEALTH BENEFITS WITH THE SIDE EFFECTS. I ALSO DEVELOPED A ‘DOWAGERS HUMP’ AT THE BASE OF MY NECK BUT SLOWLY THESE THINGS ARE DIMINISHING. EVERYTHING CROSSED THAT I DO NOT HAVE TO GO BACK ON THESE DRUGS IN THE NEAR FUTURE.
Immunosuppressants – these drugs are widely used in more severe disease. The most commonly used are azathioprine, methotrexate and cyclophosphamide. Azathioprine is a milder drug and used for mild to moderate kidney disease, or where its difficult to reduce steroid dosage. Cyclophosphamide, usually given by pulse, is widely used for kidney disease and is very effective. Regular blood testing is required initially 2-3 weekly, subsequently 4-6 weekly whilst on such medication.
AZATHIOPRINE IS MY IMMUNOSUPRESSANT AND IT DOES A GOOD JOB. BUT THIS IS WHAT IS RESPONSIBLE FOR MY IMMUNOGLOBULINS BEING LOW!
Other drugs – Other drugs are less frequently used in lupus and include intravenous immunoglobulin (often used when the platelets are low) and cyclosporin A, the drug widely used in transplantation medicine to suppress rejection. For very severe skin disease in patients where pregnancy is not a consideration, thalidomide has proved an extremely powerful medication.
Non-lupus drugs – Various medications have helped improve the prognosis in lupus. These include a variety of improved blood pressure tablets and diuretics, anticoagulants (aspirin or warfarin) in those patients with a clotting tendency, anti-epileptic and anti-depressive medication. Skin creams include corticosteroids and newer, vastly improved sun-protection creams. There are now, in addition to standard calcium and vitamin D preparations, modern effective drugs for the prevention and treatment of osteoporosis.
I ALSO TAKE VITAMIN D AND CALCIUM SUPPLEMENTS AND CITALOPRAM FOR CENTRAL NERVOUS SYSTEM INVOLVEMENT.
Shake rattle and roll!
So there you have it. Another little snippet about Lupus and a peek into my life with it. There is always more to tell (as you can imagine) so watch out for Part 5 sometime in the future. And in the good tradition of Lupus symptons, it will pop up without warning just to keep you on your toes!!! Actually. it is more likely to send you to your bed but there you go!