Has anyone taken or taking: CISLOSPORIN?

[nida_nobrdali]

Hello everybody, I'm new to this page, and was diagnosed with Lupus 17 years ago. My condition is getting worse. Has anyone taken CICLOSPORIN? If so I would really appreciate if you could let me know what side effects you may of had, allergic ..

[lupus-support1 Administrator]

Dear Nida,

Welcome to Lupus Patients Understanding & Support (LUPUS) at HealthUnlocked!

I am sorry to read that your condition is getting worse. I hope the following is helpful to you. It's not just the physical aspects of lupus that are difficult and painful, but how it affects us emotionally. We also need space and time to talk and sometimes it is difficult to talk to family and friends.

With good wishes,

Ros

About ciclosporin

Type of medicineImmunosuppressant

Used forTo prevent rejection after organ or bone marrow transplant

Rheumatoid arthritis

Severe dermatitis and psoriasis

Nephrotic syndrome

Also calledCapimune®, Capsorin®, Deximune®, Neoral®, Sandimmun®

Available asCapsules, oral solution, and injection

Your body can try to reject new donor tissue following organ or bone marrow transplants. Ciclosporin helps to prevent this by suppressing your body's immune or defence system.

Ciclosporin is also used to treat autoimmune disease such as rheumatoid arthritis, and certain skin conditions such as severe dermatitis and psoriasis. If you have an autoimmune disease it means that your immune system attacks part of your body as if it were foreign. By suppressing your immune system, ciclosporin reduces your symptoms.

Ciclosporin is also used to treat nephrotic syndrome which is a condition where large amounts of protein leak from your blood into your urine, because the 'filters' in your kidney are not working properly.

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Before taking ciclosporin

Some medicines are not suitable for people with certain conditions, and sometimes a medicine may only be used if extra care is taken. For these reasons, before you start taking ciclosporin it is important that your doctor or pharmacist knows:

If you are pregnant, trying for a baby or breast-feeding.

If you have kidney or liver problems.

If you have high blood pressure.

If you have an infection.

If you have cancer.

If you are taking or using any other medicines. This includes any medicines you are taking which are available to buy without a prescription, such as herbal and complementary medicines.

If you have ever had an allergic reaction to a medicine.

How to take ciclosporin

Before you start this treatment, read the manufacturer's printed information leaflet from inside your pack. The leaflet will give you more information about the specific brand of ciclosporin you have been given, how to take it, and a full list of side-effects which you may experience from taking it.

Your doctor will prescribe a dose for you which is tailored to your weight and the reason why you are taking it. It is usual to take a dose of ciclosporin twice daily. Make sure you take it exactly as your doctor has told you - your dose will be on the label of the pack to remind you.

Try to take your doses at the same times each day, as this will help you to remember to take them. If you do forget to take a dose, take it as soon as you remember. If it is almost time to take your next dose, skip the missed dose and take your next dose when it is due. Do not take two doses together to make up for a forgotten dose.

Your doctor will tell you how long your treatment is expected to continue. This may be from several weeks to several months. Keep taking ciclosporin until your doctor tells you otherwise.

If you have been given capsules to take, swallow each dose with a small glass of water. Do not chew or open the capsules.

If you have been given the oral solution, measure out your dose using the syringes provided and then add it into a glass of water, and stir it well before you drink. Make sure you drink all of it in order to get your full dose - you may find it helps to add a little more water to help you drink what remains in your glass. If you prefer, you can take your dose mixed into orange juice (or squash) or apple juice instead of water, but you must never mix it with grapefruit juice. Do not wash the syringe out after you have used it, simply wipe it clean with a tissue.

Getting the most from your treatment

Do not drink grapefruit juice while you are on ciclosporin. This is because a chemical in grapefruit juice increases the amount of ciclosporin in your bloodstream. This makes side-effects more likely.

There are a number of different brands of ciclosporin which may not all be absorbed by your body in exactly the same way. Because of this, your doctor will prescribe the same brand of ciclosporin for you each time you need a new prescription. If when you collect a new supply it looks different to what you have had before, ask your pharmacist to check this out for you.

Try to keep your regular appointments with your doctor. This is so your doctor can check on your progress. Your doctor will want to do some blood tests before and during this treatment, to check that your kidneys and liver continue to work well. Also, ciclosporin may change the levels of some electrolytes (salts) and lipids (fats) in your blood and your doctor will want to check for this too.

While you are taking ciclosporin, and for a while after you stop treatment, do not have any immunisations (vaccinations) without talking to your doctor first. Ciclosporin lowers your body's resistance and there is a chance that you may get an infection from the vaccine. Also, some vaccines may be less effective.

Your doctor will have discussed with you the possibility of a slightly increased risk of cancer (particularly skin cancer) associated with immunosuppressants like ciclosporin. Do not use sunbeds, and avoid strong sunlight or use a sun cream with a high sun protection factor (SPF of at least 15). If you have psoriasis, do not have PUVA treatments.

You should avoid becoming pregnant while you are taking ciclosporin. Make sure you have discussed with your doctor which types of contraception are suitable for you and your partner.

If you are having an operation or any dental treatment, tell the person carrying out the treatment that you are taking ciclosporin.

If you buy any medicines, check with your doctor or a pharmacist that they are suitable to take with your other medicines. This is because ciclosporin interferes with many medicines (including some painkillers) and so they may not be recommended for you.

If you drink alcohol, ask your doctor for advice before taking ciclosporin and alcohol. Many ciclosporin preparations contain a small amount of alcohol and your doctor may recommend that you avoid alcoholic drinks.

Can ciclosporin cause problems?

Along with their useful effects, most medicines can cause unwanted side-effects although not everyone experiences them. These usually improve as your body adjusts to the new medicine, but speak with your doctor or pharmacist if any of the following side-effects continue or become troublesome.

Common ciclosporin side-effects - these affect around 1 in 10 people who take this medicineWhat can I do if I experience this?

Increased susceptibility to infections (such as

chest or urinary infections)Contact your doctor if you feel unwell

HeadacheAsk your pharmacist or doctor to recommend a suitable painkiller

Feeling or being sick, abdominal painStick to simple foods (avoid rich or spicy meals)

DiarrhoeaDrink plenty of water to replace any lost fluids

Feeling shaky or tired, swollen gums,

high blood pressure, skin tingling or numbness,

loss of appetite, muscle cramps or pain,

increased body hairIf any of these become troublesome, speak with your doctor

Important: tell your doctor if you start to feel sick, develop a ringing noise in your ears, get head or neck pain, or get any problems with your sight or memory. This is because there is a condition called benign intracranial hypertension which has, on rare occasions, developed in people taking ciclosporin.

If you experience any other symptoms which you think may be due to this medicine, discuss them with your doctor or pharmacist.

How to store ciclosporin

Keep all medicines out of the reach and sight of children.

Store in a cool, dry place, away from direct heat and light.

Source: patient.co.uk/medicine/cicl...

[sylviaweller_79]

Hello. I was diagnosed with lupus 18 years ago and recently come out with eczema. Non of the creams or lotions worked so the skin doctor has given me ciclosporin and it is working. The only side effects for me are extreme tiredness, and little while after taking them I get a slight burning sensation of my skin. Nothing mega tho but no other side effects

[JL1w in reply to sylviaweller_79]

Hi I hope you don't mind I'm replying to a post from 2 years ago - my Rheumy wants me to start cyclosporine to eventually get off my steroids but I am very anxious - please would you mind telling me your experiences and any side effects ! I am concerned about the weight gain and profuse sweating I get from prednisolone and still have severe fatigue and occasional aches and pains even though on morphine patches so I guess cyclosporine will be a replacement for the steroids eventually . How does the body cope with no immune system ? Thanks I hope you are well !!