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Corticosteroids

Are the steroids that autoimmune patients are prescribed, the same as those drugs known to be abused in competitive sport?

 

Hi everyone! I was at the hospital the other day, and realized the question posed for today’s blog is one that a lot of people ask. Whether from the patient or even from family & friends, there seems to be a lot of confusion about the word ‘steroids’.

If you’ve read some of my other health related blog posts, you’ll know that I was diagnosed with PAN and have autoimmune related problems since 2001, I would love to help others and learn more too, I hope you enjoy this blog post. Check out my other health blogs after for other info about autoimmune conditions 🙂

 

Corticosteroids are the name of the drugs that are used to treat asthma, arthritis and found as the central medicine for many autoimmune conditions, they are often just called ‘steroids’, which as defined by medical practitioners is the chemical name for substances that have chemical structure characteristics of consisting multiple chemical rings of connected atoms. They are drugs that are closely related to cortisol, a hormone which naturally is produced in the adrenal cortex (the outer layer of the adrenal gland). They act on the immune system by blocking the production of substances that trigger allergic and inflammatory actions, such as prostaglandins. The most common examples would be Vitamin D, Cholesterol, Estrogen and Cortisone (Prednisone, Solone, Prednisolone, Deltasone, Hydrocortisone etc).

 

The drugs that many people refer to when they talk about ‘sport steroids’ are called anabolic steroids. They are synthetic substances related to the male hormones called androgens, and promote the growth of skeletal muscle which is an anabolic effect, and also stimulate the development of male sexual characteristics which are androgenic effects. The prescribed usage of these drugs occurs when males produce abnormally low amounts of testosterone, such as delayed puberty and impotence. They are also used to treat AIDS patients and other diseases where there is a loss of lean muscle mass. These are the ‘steroids’ that are sometimes being abused by some athletes to enhance performance or improve physical appearance.

 

Another short way of putting it, is while one of the uses of anabolic steroids is to gain muscle, patients use corticosteroids for inflammation and just the opposite occurs. There is weight gain in fat tissue (adipose tissue), rather than muscle, and can even cause detriment to muscles and bones, which defeats the whole idea that we would be prescribed the other kind of steroids.

 

Now you are aware of the major difference between corticosteroids and anabolic steroids, it’s still really important to know what you’re getting into, when you’re taking ‘steroids’ as we shall be calling them, as we know we won’t be dealing with the other kind. You may wonder why you’ve been prescribed such a powerful drug. Well, you might notice it is one of the few drugs that really give relief to patients while waiting for longer acting drugs like immunosuppressants (such as Imuran, Cytoxan, Plaquenil, Methetoxtrate etc.) take place and even help during the period when you are taking them already. Corticosteroids can prove some incredible results in patients and greatly improve symptoms. However, there are a number of risks and long term side effects. Steroids at best are prescribed in low dosages and in shorter periods of time. But for some conditions, you will be prescribed for a quite a while, from months to years in some cases. I’ve been taking prednisone since 2004 and cannot stress enough how important it is for patients to take calcium+D3 everyday to combat any effects that it may have on your bones over time, such as osteoporosis.

 

Common side effects you may notice will include depression, rashes, acne, weight gain, deposits of fat in the face, upper back, behind the neck and around the trunk of your body, stomach and hips. Water and salt retention leading to swelling also occurs, personally I experienced that in my face, which a lot of us call ‘moon face’ because of the bloated look, I also have it around my knees. Don’t worry, it will not stay this way forever. Experiencing PAN during my teen years, was really a test, I had slight bouts of depression and low self-esteem because of the physical pain and the emotional pain of what was happening but naturally being a very positive person, having my music and my family, I got through it. It takes a while but whenever I lowered my dosage, I felt less side effects of the medicine after a few months. Other side effects that can develop overtime include sleeping problems, diabetes, muscle weakness, thinning of the skin, osteonecrosis, avascular necrosis, stomach ulcers increased susceptibility to infection and stomach ulcers. Side effects are more minimal when taking lowest doses possible for your body size and situation. You will find throughout your journey, it will vary throughout different periods, with some years taking the most minimal, or none if the chance arises. This is usually done through tapering, and your doctor will be able to monitor your blood works and body to see what is best for you at any given time. It is really not advisable to increase or decrease your dosage on your own. Like with other medicines, you should consult your doctor with any questions about your medicine etc. as your doctor will know your medical history and details.

 

As you can see the side effects are quite great, but at the same time, a lot of us patients refer to corticosteroids as a necessary risk, you don’t also want to imagine the alternative if you let your disease progress without medicine, it can also do a lot of damage when you are not treated.  Corticosteroids are powerful medicines and should be respected, keep dosages to a minimum if you can. Dosages may rise during flare ups but it should only be that high for a short durations no longer than a month or two until you can return to your regular dosage which will only fluctuate by 0.5-5 mgs difference once it is in regular stage – personally I vary between 5mgs and 10mgs on a regular basis, and during flare ups it ranges from 25 to even 50 or 60mg when it’s really bad but only for short periods. For the first 4 years on prednisone, I didn’t gain a kilo, but as soon as the dosage went above 25mg, I started gaining weight. Earlier this year I had a flare up, my weight was 47kg at the beginning of raising the dosage, and after 4 months gained 12kg, I’m 5’3”. I’m on the way down now and have already lost 3kgs since lowering the dosage. There are different standard rules, some doctors say maximum 0.5mg per kilo of body weight, but others say 1mg, it really depends on your situation and what the doctor believes is right for you and your body. Whatever happens with your weight, don’t mind it too much, you are taking medicine and going through a condition that not many people understand. So if ever you feel down because of that, remember you are brave and beautiful no matter what you look like. It is how you deal with these situations that really challenge and show who you really are. You can still live a happy life, albeit a little different but you can do it! 🙂

 

Here are some quick tips if you are on or going on corticosteroids:

1.take your tablets at the same time every day, that way you can establish a routine for your body clock and it will also make it easier for you to remember to take them

2. If you miss taking the medicine, as soon as your remember take it. But do not double dose if you are unsure.

3. Like I said before, please take Vitamin D3 and Calcium as a supplement everyday, your bones will thank you. I’ve had bone density scans, and the doctor commented that it was really good I took them, since other patients he had seen who had not, at the same stage as I was had very brittley bones.

4. While our conditions can sometimes be quite debilitating; affecting movement, our energy levels and moods, it is also important to remember to stay active. It will make it easier. I’ve learned while resting/sleeping is essential, keeping mobile is too. If you have aching joints, try low impact activities such as swimming and yoga. If you have not so much energy, try to force yourself at least 20-30 minutes a day doing a physical activity if you can. It will increase your energy levels, get the adrenaline up, strengthen bones and muscle and encourage positive attitude towards yourself and your autoimmune condition. It sounds a little paradoxical but it’s true. Ask any gym instructor and they’ll tell you the many benefits of exercising when you’re not only healthy, but also when you’re not feeling good (at your pace of course, it’s not good to over exhaust yourself either since that will just make things worse).

5. Feeling down? Put on your favorite music, talk to a good friend or family member, do something that makes you happy to distract from negative feelings. It’s normal to have them, but don’t let them pull you down so low that you aren’t able to still enjoy life and function wholly.

6. Drink lots of water, I found personally I always feel dehydrated after taking prednisone

7. Always talk to your doc if in doubt 😉

 

 

Remember, I’m with you in this journey, I know the feelings that surrounds having an autoimmune condition and taking certain medicines like prednisone. At times it can be hard, but it is helping your body for now, keeping down inflammation and other concerns surrounded around our conditions. It’s always good to stay informed. I hope this helps anyone who is on, or going to start taking prednisone. If you have any questions or would like to add more ideas of your own, I’d love to hear from you so we can help others together.

 

 

Lots of love and take care, Lari xo

 

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