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Hoop, navorsing en ’n nuwe hoofstuk in Kqiara se alopecia-reis.
Wanneer jou kind met Alopecia Universalis leef, leer jy gou dat daar ongelukkig nie ’n “een-grootte-pas-almal” behandeling is nie. Wat vir een persoon werk, werk nie noodwendig vir ’n ander nie.
Na baie gesprekke met spesialiste, navorsing en deeglike oorweging het ons besluit om Kqiara se volgende behandelingsfase te begin.
Hierdie Vrydag begin sy met Methotrexate.
Dit was nie ’n maklike besluit nie, veral omdat Kqiara ook met chroniese streptokok-infeksies en PANDAS leef. Daarom wil ons graag verduidelik wat Methotrexate is, waarom dit voorgeskryf word en hoe ons hierdie reis gaan aanpak.
Wat is Methotrexate?
Methotrexate is ’n medikasie wat reeds vir dekades gebruik word om verskeie outo-immuun siektes, inflammatoriese toestande en sekere vorme van kanker te behandel.
Vir toestande soos alopecia word dit teen baie laer dosisse gebruik as wat vir kankerbehandeling gebruik word.
By lae dosisse help Methotrexate om ’n ooraktiewe immuunstelsel te kalmeer.
By mense met Alopecia Areata of Alopecia Universalis val die immuunstelsel die haarfollikels aan. Methotrexate probeer hierdie immuunreaksie verminder sodat die haarfollikels weer normaal kan funksioneer.
Wanneer word Methotrexate voorgeskryf?
Methotrexate word gewoonlik oorweeg wanneer:
- Alopecia ernstig of uitgebreid is.
- Die persoon min of geen liggaamshare het nie.
- Vorige behandelings nie suksesvol was nie.
- Die spesialis voel die moontlike voordele weeg swaarder as die risiko’s.
Dit is gewoonlik nie die eerste behandeling wat voorgeskryf word nie.
Waarom moet Foliensuur saam geneem word?
Methotrexate kan die liggaam se foliensuurvlakke verlaag.
Daarom word Foliensuur dikwels saam voorgeskryf om:
✔ Naarheid te verminder
✔ Mondsere te voorkom
✔ Sommige bloedafwykings te beperk
✔ Die behandeling beter verdraagbaar te maak
Dit is belangrik om die dokter se voorskrif oor die gebruik van foliensuur noukeurig te volg.
Hoe word Methotrexate geneem?
Vir alopecia word Methotrexate gewoonlik:
- Slegs een keer per week geneem.
- Verkieslik ná ’n ete.
- Op dieselfde dag elke week.
Dit is baie belangrik om nie die weeklikse dosis daagliks te neem nie.
Hoe werk dit vir Alopecia?
Methotrexate laat nie hare groei omdat dit ’n “haargroeimiddel” is nie.
Dit probeer eerder die immuunstelsel se aanval op die haarfollikels verminder.
As die immuunaanval suksesvol beheer word, kan die haarfollikels weer begin funksioneer en nuwe hare produseer.
Hierdie proses neem tyd.
Waarom kies ons nou vir Methotrexate?
Kqiara het reeds verskeie behandelings probeer.
Ongelukkig het die resultate nie aan ons verwagtinge voldoen nie.
Na deeglike gesprekke met haar dermatoloog het ons besluit dat Methotrexate die volgende logiese stap is.
Ons weet daar is geen waarborge nie.
Maar ons voel sy verdien die geleentheid om nog ’n opsie te probeer.
Moontlike newe-effekte
Nie almal ervaar newe-effekte nie.
Die algemeenste sluit in:
- Naarheid
- Moegheid
- Verminderde eetlus
- Hoofpyne
- Mondsere
- Ligte maagongemak
Minder algemeen, maar belangrik om dop te hou:
- Koors
- Seer keel
- Ongewone kneusing of bloeding
- Geelsug (geel vel of geel oë)
- Donker urine
- Aanhoudende hoes of kortasem
Enige van hierdie simptome behoort onmiddellik met ’n dokter bespreek te word.
Daaglikse monitering
Ons gaan vir die volgende ses maande Kqiara se simptome daagliks monitor.
Onder andere:
💊 Medikasie
😊 Gemoed
😴 Slaap
🍽 Eetlus
🤒 Tekens van infeksie
🩹 Nuwe newe-effekte
👁 Veranderinge in vel- of oogkleur
📝 Enige ander opmerkings
Ons het selfs ’n Kaalkopkjint Treatment Journal ontwerp om alles sistematies by te hou.
Bloedtoetse
Omdat Methotrexate die immuunstelsel beïnvloed, is gereelde bloedtoetse belangrik.
Afhangend van die spesialis se aanbevelings kan dit insluit:
- Volledige bloedtelling
- Lewerfunksie
- Nierfunksie
Hierdie toetse help om seker te maak dat die behandeling veilig voortgesit kan word.
Hoe lank neem dit om te werk?
Een van die moeilikste dele van hierdie behandeling is geduld.
Verbetering word gewoonlik nie binne ’n paar weke gesien nie.
Baie spesialiste beveel ’n proefperiode van ongeveer 3–6 maande aan voordat die effek behoorlik geëvalueer word.
Daarom is Kqiara se aanvanklike behandelingsplan vir ses maande.
Chroniese Streptokok-infeksies en PANDAS
Hierdie is waarskynlik ons grootste bekommernis.
Kqiara leef nie net met Alopecia nie.
Sy leef ook met chroniese streptokok-infeksies en PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections).
Methotrexate behandel nie PANDAS nie.
Omdat dit die immuunstelsel onderdruk, kan dit die liggaam se vermoë om sekere infeksies te beveg beïnvloed.
Vir kinders met ’n geskiedenis van herhalende streptokok-infeksies beteken dit dat ouers en dokters waaksaam moet wees vir:
- Koors
- Seer keel
- Geswelde kliere
- Skielike gedragsveranderinge
- Verergering van OCD
- Tics
- Angs
- Emosionele uitbarstings
Enige moontlike infeksie behoort vroeg ondersoek en behandel te word.
Ons verwagtinge
Ons begin hierdie behandeling met hoop.
Maar ook met realistiese verwagtinge.
Ons weet dit mag werk.
Ons weet dit mag glad nie werk nie.
Ons weet daar mag moeilike dae wees.
Ons weet daar mag teleurstellings wees.
Maar ons weet ook dat ons eendag sal terugkyk en kan sê:
“Ons het alles probeer wat ons kon.”
Vir ons gaan hierdie reis nie net oor hare nie.
Dit gaan oor moed.
Oor hoop.
En oor ’n klein dogtertjie wat elke dag vir ons wys wat ware dapperheid beteken.
Ons gaan hierdie hele reis eerlik dokumenteer—die goeie én die moeilike dae.
Bronne
- National Alopecia Areata Foundation (NAAF)
- British Association of Dermatologists – Methotrexate Patient Information Leaflet
- American Academy of Dermatology (AAD)
- European Academy of Dermatology and Venereology (EADV)
- Peer-reviewed studies oor Methotrexate vir Alopecia Areata en Alopecia Universalis
- PANS Research Consortium en kliniese riglyne vir PANDAS/PANS
Disclaimer
Hierdie artikel is uitsluitlik bedoel om ons persoonlike ervaring en die algemene mediese inligting wat ons tydens ons navorsing versamel het, te deel. Dit is nie mediese advies nie en behoort nooit ’n konsultasie met ’n gekwalifiseerde mediese praktisyn te vervang nie. Elke persoon se situasie is uniek, en behandelingsbesluite moet altyd saam met jou behandelende dokter geneem word.
💙 Volg gerus saam met ons oor die volgende ses maande. Ons sal Kqiara se Methotrexate-reis eerlik deel—die uitdagings, die oorwinnings en hopelik ook die eerste tekens van nuwe groei.
Our Next Step: Methotrexate
Hope, research, and a new chapter in Kqiara’s alopecia journey.
When your child is living with Alopecia Universalis, you quickly learn that there is no one-size-fits-all treatment. What works for one person may not work for another.
After many specialist appointments, countless hours of research, and careful consideration, we have decided to take the next step in Kqiara’s treatment journey.
This Friday, she will begin Methotrexate.
It wasn’t an easy decision—especially because Kqiara also lives with chronic streptococcal infections and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). We wanted to share why this treatment has been recommended, what it does, and how we plan to approach the next six months.
What is Methotrexate?
Methotrexate is a medication that has been used safely for decades to treat a variety of autoimmune diseases, inflammatory conditions, and certain types of cancer.
For conditions such as alopecia, it is prescribed at much lower doses than those used in cancer treatment.
At these lower doses, Methotrexate works by calming an overactive immune system.
In Alopecia Areata and Alopecia Universalis, the immune system mistakenly attacks healthy hair follicles. Methotrexate aims to reduce this autoimmune attack, allowing the follicles the opportunity to function normally again.
When is Methotrexate prescribed?
Methotrexate is generally considered when:
- Hair loss is severe or extensive.
- There is little or no remaining scalp or body hair.
- Other treatment options have not been successful.
- A dermatologist believes the potential benefits outweigh the risks.
It is usually not a first-line treatment for alopecia.
Why is Folic Acid prescribed with Methotrexate?
Methotrexate can reduce the body’s folic acid levels.
For this reason, Folic Acid is commonly prescribed alongside Methotrexate to help reduce side effects such as:
- Nausea
- Mouth ulcers
- Certain blood abnormalities
- General treatment intolerance
It is important to take folic acid exactly as prescribed by your doctor.
How is Methotrexate taken?
For alopecia, Methotrexate is usually:
- Taken once a week
- Taken after a meal
- Taken on the same day every week
It is extremely important to remember that Methotrexate is a weekly medication—not a daily medication.
How does it help treat Alopecia?
Methotrexate is not a hair growth medication.
Instead, it targets the underlying autoimmune process that is causing hair loss.
By reducing the immune system’s attack on the hair follicles, the follicles may have the opportunity to recover and begin producing new hair again.
This process takes time and patience.
Why are we choosing Methotrexate?
Over the past few years, Kqiara has already undergone several different treatments.
Unfortunately, despite our hopes, those treatments did not produce the results we had hoped for.
After careful discussions with her dermatologist, we have decided that Methotrexate is the next logical step.
There are no guarantees.
But if there is a chance that it could help, we believe Kqiara deserves that opportunity.
Possible Side Effects
Not everyone experiences side effects, but the most common include:
- Nausea
- Fatigue
- Loss of appetite
- Headaches
- Mouth ulcers
- Mild stomach discomfort
Less common, but important to monitor:
- Fever
- Sore throat
- Easy bruising or unusual bleeding
- Yellowing of the skin or eyes (jaundice)
- Dark urine
- Persistent cough or shortness of breath
Any of these symptoms should be discussed with your healthcare provider promptly.
Daily Monitoring
For the next six months, we’ll be keeping a close eye on Kqiara’s progress.
We’ll be monitoring:
💊 Medication compliance
😊 Mood
😴 Sleep
🍽 Appetite
🤒 Signs of infection
⚠️ Side effects
👁 Changes in skin or eye colour
📝 Any other concerns or observations
To help us stay organised, we’ve even designed our own Kaalkopkjint Treatment Journal to document her entire journey.
Blood Tests
Because Methotrexate can affect the immune system and certain organs, regular blood tests are essential.
Depending on her dermatologist’s recommendations, these may include:
- Full blood count (FBC)
- Liver function tests
- Kidney function tests
These routine tests help ensure that the medication remains safe throughout treatment.
How long does it take to work?
Patience is probably the hardest part.
Hair regrowth is not expected within the first few weeks.
Many dermatologists recommend allowing 3 to 6 months before evaluating whether Methotrexate has been effective.
Kqiara’s initial treatment plan is for six months.
Chronic Strep & PANDAS
This is one of our biggest concerns.
Kqiara isn’t just living with Alopecia.
She also lives with chronic streptococcal infections and PANDAS.
Methotrexate is not a treatment for PANDAS.
Because it suppresses parts of the immune system, it may reduce the body’s ability to fight certain infections.
For children with a history of recurrent streptococcal infections, this means parents and healthcare providers need to be especially vigilant for:
- Fever
- Sore throat
- Swollen glands
- Sudden behavioural changes
- Increased OCD symptoms
- Tics
- Anxiety
- Emotional outbursts
Any suspected infection should be assessed and treated as early as possible.
Our Expectations
We are starting this treatment with hope…
…but also with realistic expectations.
We know it might work.
We know it might not.
We know there may be difficult days.
We know there may be disappointment.
But we also know that one day we’ll be able to say:
“We gave her every opportunity we could.”
This journey isn’t just about hair.
It’s about courage.
It’s about hope.
And it’s about a little girl who reminds us every single day what true bravery looks like.
We’ll be sharing this entire journey honestly—the highs, the lows, and everything in between.
Sources
- National Alopecia Areata Foundation (NAAF)
- British Association of Dermatologists – Methotrexate Patient Information Leaflet
- American Academy of Dermatology (AAD)
- European Academy of Dermatology and Venereology (EADV)
- Peer-reviewed studies on Methotrexate in Alopecia Areata and Alopecia Universalis
- PANS Research Consortium clinical guidance
Disclaimer
This article is intended to share our personal journey together with general educational information gathered through research and discussions with Kqiara’s healthcare team. It is not medical advice and should never replace consultation with a qualified healthcare professional. Every individual is different, and treatment decisions should always be made in partnership with your treating physician.
💙 Follow Kqiara’s Methotrexate Journey over the next six months as we share the challenges, the victories, and—hopefully—the first signs of new growth.
Kaalkopkjint©️ 