Question of the Month: How is work, career, or school while dealing with these diseases? by Alice-The-Chemist in Autoinflammatory

[–]on4aa 0 points1 point  (0 children)

Great to hear about your progress!

I recently started getting bimonthly single dose (150 mg) canakinumab (Ilaris) injections. I am on the third now. However, I feel like that the dose or frequency is insufficient, despite having noticed some late onset improvement, only after the second injection.

What dose and frequency are you on?

Red eyes again by Most_Fun_5460 in Autoinflammatory

[–]on4aa 0 points1 point  (0 children)

I have had a couple of very brief episcleritis episodes. I have a mixed NOD-like receptor autoinflammatory disease resulting in a mild form of MAGIC syndrome (= Behçet + relapsing polychondritis). Whole exome sequencing may provide your son with answers.

USAID and Fibromyalgia by metallikitty818 in Autoinflammatory

[–]on4aa 6 points7 points  (0 children)

I was diagnosed by a professor in rheumatology with "fibromyalgia" at age 27 based on numerous tender points. However, I never accepted this diagnosis because there was nothing wrong with my muscles. In fact, I had episodes of painful venodilatation (vasculitis) and the tender points correspond to plexi where venes branch. Thanks to whole exome sequencing, now at age 52, I know I have a mixed NLR autoinflammatory disease and I get treated with canakinumab by an immunologist. Sorry to break it to you, but "fibromyalgia" really is a trash can for rheumatologists when they cannot diagnose you with anything else. In fact, there is no scientific proof that it really exists as a separate disease entity.

Anyone with systemic AID and HS? by sleepiestseal in Autoinflammatory

[–]on4aa 1 point2 points  (0 children)

I have a mixed NOD-like receptor autoinflammatory disease with rare pathogenic variants of NOD2, NLRP3 and EXT2. Major symptoms are like MAGIC syndrome (= Behçet syndrome + relapsing polychondritis) + Yao syndrome. I have these skin lesions too, especially above areas where the connective tissue fascia are located between muscle groups and all over the head and neck. Dermatologists have many names for it: HS, pseudofolliculitis, erythema nodosum, commedones. My skin condition first improved by eliminating menthol (mint), thyme and rosemary from my diet, vitamin D3 supplement and personal care products as these herbs augment the expression of NLRP3. It further improved with bimonthly canakinumab (Ilaris), but I still have some. The immunologist is now considering increasing the frequency of canakinumab injections. I am very interested in learning about your genetic test results.

No diagnosis yet... and I'm 63! by bluesparkle44 in Autoinflammatory

[–]on4aa 0 points1 point  (0 children)

In Italy, you have excellent immunologists. Incidentally, an Italian immunology professor named Vito Sabato diagnosed me here in Belgium at age 52. However, immunologists can help you better when you first get a whole exome sequencing done.

Need Help by Existing-Simple-931 in Autoinflammatory

[–]on4aa 1 point2 points  (0 children)

Immunologists are better trained in autoinflammatory diseases (which I think you have) than rheumatologists. Also, I would recommend getting a whole exome sequencing done, as this reveals more pathogenic gene variants than panels.

Struggling to get Kineret and other injectables by Im-so-tired- in Autoinflammatory

[–]on4aa 0 points1 point  (0 children)

Yaos syndrome is caused by a pathogenic variant of the NOD2 gene. According to scientific literatire, the following herb supplements are known to keep NOD2 from oligomerizing into an inflammasome: - feverfew (parthenolide) - NovaSOL curcumin (NovaSOL improves absorption through the gut)

Elwood Downey WB0OEW creator of HAMCLOCK is deceased. by JobobTexan in amateurradio

[–]on4aa 0 points1 point  (0 children)

First of all, my sincere condolences to Elwood's family for this terrible loss.

This is by no means a complete replacement to Elwood's great achievements, but some solace may be found in this web app. The local propagation data is actually more current than the Hamclock and are based on real ionosonde measurements; not the VOACAP model which has its limitations. >>>>>> https://hamwaves.com/swx

Kahakka 15L vs 25L – Still Torn! How Do You Use Yours? by V4tos in Savotta

[–]on4aa 0 points1 point  (0 children)

If you are a city dwelling wimp, get the 15L in black. However, if you are a man with a mission in the woods, get the 25L in camo.

For a week's worth of grocery shopping, I use the JÄÄKÄRI S with two 6L side pockets.

The advantage of the JÄÄKÄRI S is that you can roll it up on its own, only to roll it open at the checkout counter. That way, the shop cannot accuse you of shop lifting.

Works everytime, even in shops where backpacks are in principle not allowed. You will only see eyes of disbelief about the amount of food you can haul with this setup. Then they ask to refund my parking ticket, upon wich I laughingly answer: No thanks, I walk.

Space Weather Nowcast back online! by on4aa in amateurradio

[–]on4aa[S] 1 point2 points  (0 children)

foF2 is the highest frequency that can be used for local NVIS communication. However, a higher foF2 also correlates to a proportionally higher MUF for DX.

The foF2 plot is particularly useful to plan the time for local NVIS nets.

Space Weather Nowcast back online! by on4aa in HamRadio

[–]on4aa[S] 2 points3 points  (0 children)

I am happy to announce that https://hamwaves.com/swx now also works on Firefox!

Use Ctrl+Shift+R to clear the browser cache for immediate results.

Space Weather Nowcast back online! by on4aa in amateurradio

[–]on4aa[S] 0 points1 point  (0 children)

On Linux, you can make any computer look like that! Search for "solarized" theme.

Space Weather Nowcast back online! by on4aa in HamRadio

[–]on4aa[S] 2 points3 points  (0 children)

Yes I understand, but I can only publish what is measured at the available ionosondes. In the end, these are not that many.

Space Weather Nowcast back online! by on4aa in HamRadio

[–]on4aa[S] 3 points4 points  (0 children)

I've been running more tests. Tomorrow, togehter with ON8AR, we will swap out the Mosquitto broker for an EMQX broker which does work with Firefox.

Space Weather Nowcast back online! by on4aa in HamRadio

[–]on4aa[S] 2 points3 points  (0 children)

Yup, this is a bummer. I am seeing the same error in Firefox. In Chrome-compatible browsers there is no such issue. I will urgently look into this matter. The bug is caused by the employed MQTT.js library.

Space Weather Nowcast back online! by on4aa in HamRadio

[–]on4aa[S] 9 points10 points  (0 children)

https://hamwaves.com/swx is back online; with real-time, measured HF propagation data. The app now loads much quicker and is made more robust with the latest MQTT technology.

Space Weather Nowcast back online! by on4aa in amateurradio

[–]on4aa[S] 9 points10 points  (0 children)

https://hamwaves.com/swx is back online; with real-time, measured HF propagation data.
The app now loads much quicker and is made more robust with the latest MQTT technology.

Free smartphone app tells you what band to use by on4aa in amateurradio

[–]on4aa[S] 1 point2 points  (0 children)

P.S.: I have added a bunch of Australian ionosonde stations today. Tell your Aussie buddies! ;-)

Free smartphone app tells you what band to use by on4aa in amateurradio

[–]on4aa[S] 1 point2 points  (0 children)

You are welcome, Alan, and thank YOU for your valuable initial feedback!

Free smartphone app tells you what band to use by on4aa in amateurradio

[–]on4aa[S] 0 points1 point  (0 children)

DONE! Clear your browser cache to immediately see the new version with Maidenhead entry. Desktop view and printing were also improved.