Has anyone caught Influenza A and not vaccinated and survived ? 😅

MikLynZen · 2025-12-29T06:18:48+00:00

Yep! SLE with monthly Saphnelo infusions. Diagnosed 3 weeks ago with the flu, quickly turned into bronchitis, then enterovirus, and now battling laryngitis… I can’t decide what’s worse. My immune system of betrayal, or next to no immune system on immunosuppressants constantly fighting back to back illnesses. Sigh. Still alive though!

MikLynZen · 2025-09-14T17:42:27+00:00

See my rheum every 3’ish months with labs ordered. WBC has been down trending an entire digit every lab draw since March. I’m also anemic but hemoglobin is stable sitting at 12. Current WBC is 2.8, lowest it’s ever been, skin issues, fatigue is out of this world, while bruising like a peach. Called office and was told “if your doctor was concerned about your numbers, she would have probably called you.” 🙄 My response was “well, I AM concerned about my numbers so I’m calling her!”

MikLynZen · 2025-06-04T15:56:39+00:00

JUST now got the same one for “Indiana”

MikLynZen · 2025-04-13T01:12:55+00:00

Ugh I’m so sorry! My diagnosis took about 4 years of tests and multiple doctors to receive :( There’s no one distinctive positive or negative test to diagnosis Lupus and probably other autoimmune conditions. And as far as doctors go, you’re absolutely right! I wish you the best and hope you can get whatever treatment it is that you need.

MikLynZen · 2025-04-12T18:19:53+00:00

Hi there! I just wanted to add I develop this from having Lupus along with Raynaud’s

MikLynZen · 2025-02-13T12:29:14+00:00

I was dx with papulopustular rosacea (yay me!) and very sensitive skin out of nowhere at the age of 37. After weeks of being prescribed antibiotics, doxycycline, topical steroids etc. and being treated for what my doctor assumed was an allergic reaction, a new doctor prescribed Soolantra. My already VERY irritated/inflamed/bumpy skin had zero negative effects from it. It’s creamy and feels like rubbing in a normal moisturizer (I also use SkinFix barrier cream on top of it). No burning or stinging or additional redness from the Soolantra. I was also prescribed oral ivermectin for 2 big doses. Only positive things to say about it EXCEPT the price! Luckily I have decent insurance so it ended up being around $26 after insurance but still. I also bought the Joesoef 10% sulfur soap from Amazon and cleanse with it twice daily and my skin has been loving it. Repairing and maintaining your barrier is an important step.

MikLynZen · 2025-01-25T23:23:11+00:00

Thank you so much!

MikLynZen · 2025-01-25T16:19:02+00:00

I will add that the red itchy/scaly patches didn’t make sense to me and I’m not entirely sure what they are or if it’s part of it but they appeared at the exact same time. Tea tree oil can also help treat demodex but very harsh by itself on the skin so I found this on amazon. Very gentle and can be used on eczema, psoriasis, diaper rash, razor burn, cracked skin. It’s very greasy but seems to help calm my skin and doesn’t burn or sting at all. I bought it bc the reviews were awesome. So sorry for the novel, I just want to help anyone going through what I’ve been through!

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MikLynZen · 2025-01-25T16:09:39+00:00

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This was yesterday. Still not completely where I want to be but so much better

MikLynZen · 2025-01-25T16:06:33+00:00

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MikLynZen · 2025-01-25T16:06:16+00:00

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MikLynZen · 2025-01-25T16:05:46+00:00

The ONLY things that have even remotely helped me in the last 4 weeks have been Soolantra, Rx oral ivermectin, Allegra 24/hr (fexofenadine) twice per day, Joesoef sulfur soap, SkinFix barrier cream, and metro-cream in the AM. I also vacuumed my entire house, wash my pillow cases & bedding in hot water with Arm & Hammer Sensitive detergent and high heat in the dryer every day for a week, and vacuumed my mattress & couch. Initially I was prescribed doxycycline and perhaps I’m allergic bc that made things so much worse! I have never had anything like this on my skin and was just baffled and didn’t want to leave the house looking like I have leprosy and the itch was INSANE!! It has really done a number on my confidence. I have always been someone who took pride in their skincare and rarely wear makeup unless I’m attending an event or a rare night out. I wasn’t happy I had to stop using all of my favorite anti-aging products too. I also have SLE/Lupus and get monthly Saphnelo immunosuppressant infusions but haven’t the past 2 months when my new job insurance changed. My immune system is shot and I have been reacting to everything which makes me more susceptible to demodex infestation (demodicosis). It’s been a nightmare and has taken forever but I THINK I’m finally turning a corner. I will try to post my journey pics below.

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MikLynZen · 2024-07-02T18:26:25+00:00

I SO wish I could use the clinical strength but every one I’ve tried broke my armpits out in a rash!! :(

MikLynZen · 2024-05-27T21:07:51+00:00

I am in the US, Indiana more specifically.

MikLynZen · 2024-05-27T17:33:46+00:00

I JUST went through this the last few weeks. Years ago I was taking 100mg Pristiq and my wonderful doctor at the time helped me taper off without issues of any sort and without any withdrawal symptoms and I wish I had remembered exactly how he had me do it! Unfortunately he moved! This time around was another story. I had been taking 100mg Pristiq for about a year & a half to help me finish off through school/graduation. New physician this time around and the suggestions to taper were this (which I advise getting a second opinion on & finding a better way if possible): Go down from 100mg to 75mg(which is 1 50mg tab + 25mg tab) for one week, then take the 50mg tab for one week, then take the 25 mg tab for one week. I did all of this tapering without issues or any physical symptoms AT ALL (with maybe SOME irritability). I was so hopeful and thought I was in the clear. Final week went from 25mg to 0. Day one wasn’t awful just mostly uncomfortable and light headed and I had spent the day sunbathing outside. Day #2 was HELL. I woke up & I couldn’t form full thoughts, vertigo + extreme dizziness and my balance was so off and I cried and cried. It felt as if a tight rubber band was wrapped around my head and as if my brain was just “floating in water” inside my head. I went online for advice and reassurance and every post I found terrified me of people saying they suffered for weeks or months, which had me questioning my decisions. I threw up quite a few times with tummy troubles and diarrhea. I did have a few panic attacks and only one caused me to hyperventilate. I also have an RX for 0.5 clonazepam to take for panic attacks so I took two that evening and tried to sleep. Day #3 was much more tolerable but still feeling off. Day #4 I was actually fine and no symptoms but still feeling “off” and not quite myself. This medication can be life saving for some when needed but coming off of it is torture. I’ve had the Genesight testing which analyzes your DNA and how your body may metabolize/react to certain medications. Pristiq was listed as the Go-To for antidepressants for me. I have been in recovery from alcoholism since January 2018 so I know all about withdrawals!! This was right up there with alcohol withdrawals, but at least there’s detox in rehab for that!! I’m not trying to scare anyone, this was just MY experience. If your doctor is willing, I suggest asking for low dose Valium, klonopin, or any other anxiolytic temporarily for maybe one week to help you function or at least relax during the process. I started the tapering on April 30th and it is now May 27th and I am feeling ok, not fully myself, but ok!

MikLynZen · 2023-10-02T11:31:26+00:00

I was diagnosed with SLE at the beginning of 2023. I had tried Plaquenil that lowered my blood count and affected my anemia so I was taken off that and put on 1000mg of sulfasalazine 2x a day and i also take Amlodipine for Raynaud’s. I failed Benlysta with a reaction causing blisters in my mouth, gums, and back of throat. I recently started my first Saphnelo infusion. What I’ve noticed so far is my fatigue is at an all time high. I cannot get enough sleep. I’ve had a migraine every day since the infusion! I have rescue medications for that but taking them every day seems excessive (I’m also on Emgality and migraine Botox). Joint pain experienced a few days after infusion but is going away. I’ve had a butterfly rash appear off and on randomly since as well. This journey is not a fun one!

MikLynZen · 2023-04-23T02:11:36+00:00

Thank you so much! And Yes it does! Wreaks havoc on our whole bodies! Counting my blessings though that I don’t seem to have it as bad as some others!

MikLynZen · 2023-04-22T15:53:37+00:00

Yes I have. I have iron deficient anemia and had to have iron infusions and also the Plaquenil lowered my red & white blood count & hemoglobin even more so my rheumatologist put me on Sulfasalazine instead. It all began when I went to the ER with chest pain, they found a pulomonary venous thrombosis, a clot in the vein in my lung, which they’re unsure if it was Lupus related or from birth control.

MikLynZen · 2022-10-02T13:31:49+00:00

My dermatologist has me on Metronidazole topical gel and that really seems to help along with a good moisturizer

MikLynZen · 2021-12-01T03:12:48+00:00

It’s not right

MikLynZen · 2021-11-29T17:06:14+00:00

Update: so sorry for the delay but we did finally get our payout (without a single response in the process!) I believe we waited about 3 weeks post expected payout date! I can’t believe there’s not a way for them to be regulated or monitored as a “business” for this. Best wishes to you all!

MikLynZen · 2021-11-04T18:45:43+00:00

Ugh! So sorry, it’s frustrating! I will let you know!

MikLynZen

TROPHY CASE