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Lupus

Lupus, Treatment

Avoid these with lupus

10. November 2021

When I was first diagnosed with lupus, I had no idea there are certain supplements, over-the-counter medicine or prescription medicine that I couldn’t take. I learned the hard way to read labels and to check twice if I can take a certain supplement and/or medicine. I compiled a list of 4 things to avoid with lupus that may help you on your journey to health 🙂

1. Ingesting alfalfa sprouts causes the onset of SLE. Alfalfa and mung bean sprouts contain L-canavine, an amino acid protein that stimulates the immune system. With our overactive immune system, it is not advised to take it.

2. A herbal supplement, Echinacea, can help with colds and the flu. It can increase the activity of the immune system, therefore we should avoid taking it.

3. Special attention deserves one medication – the sulfa antibiotic. Some people who have lupus will have a flare or develop an allergic reaction when taking this antibiotic. People with lupus should never take this antibiotic.

4. Supplements containing ephedra* can exacerbate Raynaud’s phenomenon because they can constrict blood vessels. * Ephedra or Ma Huang is a plant that has been used in Chinese medicine. Its medicinal use ranges from treating bronchitis and asthma to improving cold and flu-like symptoms like congestion. Ephedrine is the main alkaloid within ephedra, which has been synthesized for medical uses.

Sources:

  • Sources/Zdroje: The Lupus Encyclopedia, Donald E. Thomas Jr. M.D., FACP, FACR
  • Lupus Q+A (Revised Edition), Robert G. Lahita, Robert H. Phillips
  • The Lupus Book: A Guide for Patients and Their Families, Daniel J. Wallace
  • https://www.samedaysupplements.com/blog/supplement-reviews/ephedra-pills-vs-ephedrine/
Lupus, Pregnancy

After childbirth

6. April 2021

We have already talked about planning the pregnancy and being pregnant. We are missing the last piece of the puzzle – what happens after childbirth.

Can I have a natural birth?

Will my lupus flare up after giving birth?

Is it true that I will have to take high doses of medication after childbirth?

Can I breastfeed my child?

If you are having the same questions, this video is for you. In the third episode of Lupus and Pregnancy series, I talk with dr. Laura Andreoli about what happens after childbirth.

Lupus, Pregnancy

Pregnancy with lupus

6. April 2021
Tehotenstvo

What medication is safe to take during pregnancy?

Can women on biologic treatment become pregnant?

Can lupus flare up during pregnancy?

How can you ensure a healthy pregnancy?

I answer these questions with dr. Laura Andreoli in our second episode in the Pregnancy with lupus series.

Lupus, Pregnancy

Preparation for Pregnancy

20. February 2021

Finding prince charming can be a daunting task. When you finally find the one, true love, you want to start a family. It may not be so easy because there is this big shadow over your head called lupus.

Now, let me tell you some good news. Women with lupus can have children. There are certain steps that you would have to take prior to conception. It will be so worth it because you will have a healthy pregnancy and be able to take care of your future baby.

Have a look at my video where I interview a rheumatologist who specializes in pregnancies with lupus. This is part one of three in the Pregnancy and lupus series. We are having a closer look at the preparation for pregnancy.

Lupus, Pregnancy

EULAR Recommendation 3

20. February 2021

Can lupus cause infertility in women? Although it may be difficult for a woman with SLE to become pregnant during a severe flare, women who have lupus have normal fertility rates.

“Women should receive counselling about fertility

If you wish to have a baby, either now or in the future, you should discuss general and disease-related risk factors with your doctor. Your lupus (especially lupus nephritis), your age, the drugs you take for your lupus, certain lifestyle exposures (such as tobacco use or alcohol consumption) may affect your ability to get pregnant. There may be lifestyle changes you can make to improve your fertility, such as limiting how much alcohol you drink, or stopping smoking.”

Sources:

https://www.eular.org/myUploadData/files/Lay_summary_EULAR_reco___Mgt_SLE___TF_report.pdf

Lupus, Pregnancy

EULAR Recommendation 2

20. February 2021

“Women with lupus should be counselled about the use of effective contraception

Your doctor should talk to you about your contraceptive options, including the pill, a coil, or an implant. Using contraceptives is especially important to prevent unwanted pregnancies when your disease is very active or when you are taking drugs that could be dangerous for a fetus. A combined pill may not be suitable if you have APS, or if your doctor thinks you are at high risk of developing blood clots. In such cases, the progesterone-only pill and a coil may be suitable options.”

The most effective oral contraceptives are those that contain a combination of the female hormones estrogen and progestin. In addition to helping to prevent pregnancy, they can also lower the risks of getting certain gynecological cancers, including uterine, enometrial and ovarian cancers. However, they can potentially cause blood clots, worsen migraines, worsen liver disease or increase the risk of developing breast cancer. Studies show that the „newer“ OCPs that contain lower amounts of estrogen are generally safe in most women who have well-controlled lupus without increasing the risk for lupus flare.

However, one never knows with our disease. Have a look at the list below when oral contraceptives are contraindicated.

Women who have lupus who should not take oral contraceptive pills:

  • Have active moderate to severe lupus
  • Test positive for antiphospholipid antibodies
  • Have had blood clots in the past
  • Have had a stroke before
  • Have poorly controlled hypertension
  • Have atrial fibrillation
  • Have had coronary artery disease or a heart attack before
  • Experience migraine headaches
  • Have Raynaud’s Phenomenon (although this is not for certain)
  • Who smoke
  • Have nephrotic syndrome (a complication of lupus nephritis that increases the risk of getting blood clots)
  • Have had breast cancer in the past
  • Have very high cholesterol (increases the chance of blood clots)
  • Have cirrhosis of the liver or liver cancer (to include hepatic adenoma)

Sources:

https://www.eular.org/myUploadData/files/Lay_summary_EULAR_reco___Mgt_SLE___TF_report.pdf

The Lupus Encyklopedia, Donald E. Thomas

Lupus, Pregnancy

EULAR Recommendation 1

20. February 2021

In 2017 the European Alliance of Associations for Rheumatology (EULAR) introduced EULAR recommendations for women’s health and the management of family planning, assisted reproduction, pregnancy and menopause in patients with systemic lupus erythematosus and/or antiphospholipid syndrome. These 12 recommendations move away from undue caution against pregnancy for women with lupus. On the contrary, health professionals are encouraged to open this topic with their patients provided that the individual risks for each one of them are discussed. The recommendations were developed by a multidisciplinary team of medical specialties, other healthcare providers and patient representatives. They are based on scientific evidence or expert opinions of the members of task force themselves. For the next 12 days, I will tell you more about each recommendation. Please share these posts so that women with lupus and/or APS know about them.

“Women should receive counselling and advice before they decide to have a baby

Very severe or flaring lupus, or having APS can have very serious consequences for a pregnant woman and her baby. This should be discussed before a woman decides to have a baby. Each woman’s risks, such as her type of lupus and her individual treatment regime, should be assessed to help develop the best strategy for a safe pregnancy.”

Sources:

https://www.eular.org/myUploadData/files/Lay_summary_EULAR_reco___Mgt_SLE___TF_report.pdf

My journey, Self-help

Urinary Tract Infections

9. February 2021

It can be difficult to live with lupus. Especially when you feel like you are attracting everything the wind blows you way. Have you also noticed that a certain part of your body gets attacked more often than others? Mine is the urinary tract. It seems to be the most vulnerable.

Let me summarize what antibiotics for urinary tract infections you should avoid at all costs, what alternatives you can try out and foremost how to prevent these common infections.

Antibiotics for urinary tract infections to avoid:

  • Sulfamethoxazole and trimethoprim cause lupus flares. I was recommended to put it on my list of allergies so that every doctor knows not to prescribe this medicine.
  • Doxycycline also worsens the symptoms of lupus and should be avoided by luppies.
  • In addition, I am allergic to penicillin, i.e. cannot take penicillin, clarithromycin, ciprofloxacin, cefixime commonly prescribed to treat UTIs. If you are allergic to a certain active substance you have to avoid all medicines in this group.

What helps me get over the inceptive infection? There are actually several products.

  • First warning signs – very mild but strange feeling when I pee – I use homeopathics made by my doctor. You can disagree with this approach but it helps me in these initial stages.
  • If I overlook the first signs and they become more apparent – the feeling of not completely emptied bladder several times in a row, frequent urge to pee – I alternate between two herbal products – one is a mix of several herbs to help with UTI and the other one is with Tropaeolum majus. These work the charm quite nicely. You can look for products that contain cranberries, Veronica officinalis, Tropaeolum majus. Before you try any of these, it is good to consult with a medical professional whether they are suitable for you.
  • When I ignore the previous signs and the infection spreads – burning sensation when peeing, smelly urine, or swimming in a lake right after my period, I go for my urologist’s recommendation. These drops contain also hyaluronic acid, D-mannose, and extracts from Tropaeolum majus and Epilobium parviflorum.
  • Only when the above-mentioned remedies don’t work, I see my doctor and we set on a journey to find something stronger for me.

However, the most important although I am writing it at the end, is prevention. I try to prevent UTIs at all costs. They are uncomfortable, they hurt, they take forever to heal and I like feeling good, healthy. So, what do I do?

  • I read the signs of my body. It takes time and practice but once you master it, you’ll realize that your bodies tell you everything.
  • I don’t sit on cold surfaces. My grandmother taught me not to sit on the ground in the months that have an -r in them. Not that I follow it to the letter, but I rather stand or sit on a pillow.
  • I keep my feet warm. I wear socks and slippers almost all year round. My feet just get cold easily and it is an easy way for me to get a UTI.
  • I wash myself down there often and keep my underwear dry and clean. Also “dirty” bacteria can cause UTIs.
Fatigue, Lupus

10 principles to help you sleep better at night

25. January 2021

You probably know there is something called sleep hygiene. This can be defined as the principles you should follow when you want to sleep well at night.
The results of my unscientific, spontaneous survey show that even though you sleep more than 8 hours a night, it is not always a good night’s sleep. The reasons differ: children wake you up at night, children wake you up early in the morning, you have bad dreams, you generally sleep poorly. However, the causes were often also due to bad sleeping habits: you can’t get to bed early enough, you watch TV before bed, you fall asleep with a mobile phone in your hand, you fall asleep in front of the TV and then you can’t fall asleep again when you get to bed.
Experts recommend working on proper sleep hygiene to increase the quality of your sleep. I have to admit that when I don’t sleep well, I’m tired, I am irritate, I don’t perform well, I make a lot of mistakes, everything seems to take me a bit longer.
I will share some techniques hat could help you sleep better at night. Maybe you’ll find out things you didn’t know about. I’ll comment on them from my own perspective because I’m far from perfect and I don’t follow all of the principles. You can choose what suits you best. But it is important to start following them if you want to improve the quality of your sleep. I will say one thing here: decide on one new habit that seems simple and you will easily be able to implement it into your daily life. Don’t choose more things. You can feel distressed when you are unable to follow through. Pace yourself 🙂

  • Try to go to bed and get up at the same time, even on weekends and holidays. This is something that I work on and I can say that I am successful. I specifically plan to be in bed by 22.00. That means getting ready for bed around 21.00 – turn off my computer, TV, take a shower, walk my dog sometimes. Most of the time, I fall asleep with a phone in my hand. That is because I read ebooks mostly. I have a yellow light with limited intensity on so it doesn’t stimulate me too much.
  • Learn to cope with stress – easier said than done. I realise the importance of coping with stress and there are some strategies that work for me (I’ll share them in future posts) but this is something I struggle with. However, I try no to stress myself about things that I can’t control or change. It is something like my mantra. Maybe you can try it, too. Write it down and place it visibly at your desk. Whenever you’ll start feeling under pressure, repeat the words. It may be helpful.
  • Exercise regularly, but do not exercise before bedtime. This one is easy. This is something that I have no problems doing 🙂
  • Do not eat at least 2-3 hours before bedtime. This one is also easy. I actually can’t lie down after a meal.
  • Limit drinking fluids before bed so you don’t have to go pee in the middle of the night. Yep, this one is tricky. I try only taking one of my medications with a sip of water in order to avoid mid-night trips to the bathroom. This one is work in progress.
  • Limit or omit caffeine, alcohol and cigarettes before bedtime. These are stimulants that prevent you from falling asleep. I know my body, so I know not to drink coffee or black/green tea after 14.00. And I don’t smoke, so no problem there.
  • Take a hot bath 1-2 hours before bedtime. As your body gradually cools down, you become sleepy. This one is interesting. I haven’t tried it in a long time.
  • Go to bed when you feel sleepy. This is so true. When I miss this window of opportunity, it takes me forever to fall asleep. You can see how important it is to listen to your body. It asks for everything.
  • Your bedroom should be a place of rest. You should look forward to going to the bedroom. If you can and your apartment/house is big enough, do not turn your bedroom into an office. I don’t even have TV in my bedroom.
  • If you wake up at night and can’t fall asleep, try to stop the flow of thoughts. Mindfully stop the train of thought and take deep breaths. This usually helps me fall asleep again faster.

Sources:
The Lupus Encyclopedia, Donald E. Thomas, Jr., M.D., FACP, FACR
https://www.vyspimesa.sk/article/sk/pravidla-spankovej-hygieny
My own strategies