Thank you 3fifteen and Internet Solutions for helping APSSA reach so many
Wonderful news - Professor Hughes has agreed to be our Patron. Thank you Professor Hughes, this is such an honor. We badly needed support and to have you behind us will hopefully encourage others to join in and move the foundation forward.
Other great news is that doctors from the Charlotte Maxeke Hospital (Jo-Burg General) and the Donald Gordon Hospital have agreed to assist the foundation. This is vital for us, for without a medical team the foundation is struggling to obtain funding and support. I am so grateful to you, this is going to be the catalyst we needed to ensure that the foundation reaches its aims.
Now we need to reach out and ask you, the reader to help here please. Without help from you we will continue to struggle. There must be many of you out there who have talents that can help the foundation. We need your help to survive. Please contact myself or Wendy if you feel you can help us acheive the aims of the foundation.
3rd July 2009 - Take a look at Hughes foundation at www.hughes-syndrome.org You will now find a blog by Professor Hughes and a link to a pod cast in which APS is discussed. Both blog and video are very interesting.
I will be using this page to talk about issues that are affecting many people with APS, but that are not understood as well as they should be. This month we will be talking about Chronic fatigue, joint and bone pain.
If you have comments to make about these subjects, or have other issues that you feel need to be disussed on this page. Please contact us.
Chronic fatigue is debilitating to the sufferer and is a common symptom in auto-immune disorders such as APS, Lupus, Rheumatoid Arthritis, etc.
The hallmark symptoms of CFS are overwhelming fatigue and weakness that make it extremely difficult to perform routine everyday tasks, like getting out of bed, dressing, and eating. The fatigue does not get better with bed rest. The illness can severely affect school, work, and leisure activities. It is devastating to suffer from chronic fatigue, not only for the sufferer, but also their family and friends who will in all probability be unable to understand that you have no control over this dreadful condition.
Some patients with APS find relief from these symptoms with ecotrin (aspirin) alone. If you continue to suffer severely from the effects of fatigue, speak to your specialist about anti-malarial treatment. I personally found enormous relief from chronic fatigue with the anti-malarial drug Chloroquine Phosphate, but that drug was discontinued due to concerns with side effects. I was then prescribed Plasmaquin to replace it, but despite helping many with auto-immune disorders, it failed to work for me. I knew about Plaquenil and asked to have it prescribed. I find this drug very effective. Plaquenil is the preferred drug of choice in Europe and elsewhere in the world for use in patients with auto-immune disorders. Sadly, South Africa has not sanctioned its use, so if you wish to use this drug, one has to go through the red tape of ordering this Sec 21 drug through the medical council. One hopes that the Medical council will soon follow the rest of the world and sanction its use, so that South Africans can benefit from it more easily. If your specialist is happy to prescribe Plaquenil for you, you can download the section 21 forms required on www.focis.co.za/files/section_21.doc.
Your doctor or specialist will help you fill out these forms for you. Your medical aid may not cover the cost of these drugs.
If you require more information on this matter please contact the foundation.
JOINT PAIN
Antiphospholipid Syndrome has been recognised as an inflammatory disorder as well as a clotting disorder; this can result in inflammation throughout the body affecting organs and joints. It is joint pain we will be discussing here. Not all patients with APS experience joint pain.
Joint pain in APS can be mild or debilitating, causing extreme pain and stiffness. The joints affected can be anywhere and everywhere. The pain can become exhausting to experience, sometimes not much swelling is noticeable, and so family can be less than understanding! I have heard many stories of doctors who fail to recognise the pain and distress of joint pain in APS.
Sometimes the pain can spread throughout the joints in the body, making walking extremely difficult. If severe and widespread, it can cause everyday life to become a nightmare for the sufferer. The patients CRP (C reactive protein) levels are frequently elevated. The CRP levels are not necessarily indicative of the severity of the pain.
Your doctor will need to treat you on an individual basis. Your treatment will depend on the amount and type of pain you are experiencing and your current treatment regime.
Please discuss the following with your specialist:-
Anti malarial therapy is considered a mild disease modifying therapy in the management of inflammatory arthritis, in particular for Rheumatoid arthritis and joint, skin and fatigue symptoms in Lupus. It has also been found to be very effective in the management of general symptoms such as rash, fatigue and pain in APS.
The drug is available in several forms.
Chloroquine sulphate - Nivaquine / plasmoquine
Chloroquine phosphate - Chloroquine
Hydroxychloroquine - Plaquenil
The decision regarding usage is based on need for treatment of the actual immune process rather than just treatment of symptoms of pain. The response is often only seen after 6 weeks - 2 months, but response may take as long as 6 months to begin to be effective. The drug may be used alone or in combination with other disease modifying drugs - in particular methotrexate. Interestingly, combination with methotrexate seems to reduce side effects of the methotrexate. Methotrexate is considered only if the immune response dictates a need.
There are also other treatments used to control the immune process and therefore the symptoms that are experienced by the patient.
Anti-inflammatory drugs and other pain relief must be carefully prescribed by a knowledgeable specialist, as these drugs can affect the anti-platelet and anti-coagulant therapy you may be taking. Some drugs can also in fact cause the immune response of APS to increase and cause you more problems. So, be careful to ensure you don’t take over the counter medication or that prescribed by a doctor with little knowledge of APS.
ALWAYS GET YOUR APS SPECIALIST TO OK ANY MEDICATION.
Do not despair, a good specialist and a tailored treatment programme should help you achieve a good quality of life.
You are always welcome to contact myself or Wendy on our contact numbers if you wish to ask any advice on these matters.
* A false positive test for syphilis is characteristic of the antiphospholipid antibody syndrome. Patients with this false positive test do not have syphilis, and the illness has nothing to do with infection by syphilis.