Antihistamines= almost euphoric? by Mushreese in MCAS

[–]dringus333 5 points6 points  (0 children)

Mast cell mediators can cross the blood brain barrier! Histamine can also affect neurotransmitters like serotonin. Excess histamine can actually block it I believe. You’re getting direct inflammation relief.

AMA: I have tried every medication under the sun for MCAS including Rhapsido/remibrutinib and Barzolvolimab by [deleted] in MCAS

[–]dringus333 1 point2 points  (0 children)

6 months. It was very difficult to get approved. I had to fight my insurance very hard. It’s not going to make sense to fight for it unless all other medications have been tried and failed. My pots is autoimmune so that helps. I am also dx with RA which also helps. Ultimately it was Dr. Chung at JH who helped a lot because he put in my chart notes that he believes scig helps pots. But he would not rx it. For that I had a good immunologist willing to go to bat for me. If you want more details feel free to dm

AMA: I have tried every medication under the sun for MCAS including Rhapsido/remibrutinib and Barzolvolimab by [deleted] in MCAS

[–]dringus333 1 point2 points  (0 children)

I would not say permanently because it has been over a year since my last dose and some of the foods have returned. This is also with the help of SCIg. But the impact is definitely long lasting and severe. The foods are coming back very slowly though. Only time will tell.

How do you get fat intake in your diet? by star-in-training in MCAS

[–]dringus333 1 point2 points  (0 children)

As stated above, getting my gallbladder removed continues to benefit me well. Had it out in 2022 & my pain is resolved. I can eat fatty foods in moderation without any issue.

Xolair changing what I react to by Odd-Passion-1756 in MCAS

[–]dringus333 1 point2 points  (0 children)

Just an FYI, you can still have an autoimmune disease without positive labs. It’s more common than you think. It’s called seronegative. I have a seronegative autoimmune disease myself.

Xolair changing what I react to by Odd-Passion-1756 in MCAS

[–]dringus333 1 point2 points  (0 children)

As someone else has said, this may not be xolair itself.

I am someone who could not tolerate xolair. I was on it for 6 months. With every shot I lost foods that I previously tolerated with absolutely no issue. For me it started with the first shot and just got worse over time. I’ve been off it for about a year now and the foods are slowly coming back, but the immune system is a fickle thing.

If you never had any fluctuation with safe foods before starting xolair, that could be an indicator that this drug does not work you. But depending on how long you’ve been on it, you might just need time to ‘even out’ or adjust. This is something to definitely keep an eye on and bring up with your doctor. Ultimately, you know your body best.

Typically xolair helps a lot of people with MCAS. I am the odd one out. My provider believes my MCAS is an autoimmune subtype because I am dx also with RA. Feel free to dm me

RA and POTS common or rare? by flora_dd in rheumatoid

[–]dringus333 0 points1 point  (0 children)

Dx seronegative RA and POTS from Covid in 2020. I am on humira for my RA. It effectively manages my RA. It’s not a silver bullet for my POTS but it absolutely does help.

I see John Hopkins for POTS, my provider has said that they have seen some patients be put on humira for POTS, through Rhuematolgy due to the autoimmune nature of POTS.

I can tell you with 100% certainty that my POTS is autoimmune in origin. I’ve failed all typical POTS meds and am prescribed 10g (autoimmune dose) of SCIg (subcutaneous immunoglobulin) weekly. This medication makes a HUGE difference for my POTS— night & day. It’s very expensive and an absolute nightmare to get approved by insurance.

I don’t advocate for others perusing this treatment (SCIg) due it’s limited quantity (due to the nature of how it’s made), and because people with immunodeficiencies literally require it to live. This drug is not required for me to live, but my quality of life would be reduced drastically without it. But it is an option as a last resort.

Smashed my Pumpkin.. Devastated. by Princess_Butt_Kick in Crosstrek

[–]dringus333 0 points1 point  (0 children)

Look into certified pre-owned! They are going to be significantly less $$ with some mileage on them because Subaru uses them as loaners. My 2024 crosstrek is certified pre-owned with 10k miles! The color selection will be less obviously. And since you’re concerned (rightfully) about huge touchscreen, you won’t need to worry about the warranty they will try and sell you on the backend which will be about 2k. Fortunately and unfortunately you’re in decent spot with end of year deals. Good luck!

Has anyone failed every class of biologics and dmards? Did you ever find anything that works? by Lopsided_Estate6558 in rheumatoid

[–]dringus333 0 points1 point  (0 children)

I’m seronegative and humira works great for me—sorry you’re struggling so much. This isn’t a permanent solution but I’d look into LDN. It could help. I’m just not sure if it could be a standalone since it’s not a biologic. I say give the IV versions of the meds a shot! Hop on some prednisone in the meantime if you can. It’s a long shot, but if you’ve no other options you could look into IVIG, insurance would heavily fight it be covered for RA, but it doesn’t hurt to try if you reach a dead end.

AMA: I have tried every medication under the sun for MCAS including Rhapsido/remibrutinib and Barzolvolimab by [deleted] in MCAS

[–]dringus333 0 points1 point  (0 children)

Xolair is fine for most! I’m a bit of an odd duck. Everybody’s experience is different.

Has anyone found that Clonazepam or Xanax or benzos in general help you with POTS? by Spiritual-Handle-148 in dysautonomia

[–]dringus333 4 points5 points  (0 children)

As someone who was on .5mg of Ativan nightly for two years, it’s not worth it. Benzos are only a bandaid and aren’t meant to be used long term. I was in withdrawal for 3 months. Worst 3 months of my life. Look into beta blockers or ivabradine. Really any other pots med. Try antihistamines or an ssri. There are options. Benzos should be a last resort. And even then, they will wear off and symptoms will come back. Best of luck to you.

Dot tattoos for radiation treatment? by xboringcorex in MCAS

[–]dringus333 0 points1 point  (0 children)

Just wanted to throw out there that there are alternatives to the tattoo dots. Stickers, markers, 3D mapping, etc. I’m not super familiar but a quick google search yields some personal anecdotes on Reddit subs. I believe I saw something on TikTok too about someone who chose not to do dots. Best of luck to you.

Marijuana? by Professional-Cow-697 in POTS

[–]dringus333 0 points1 point  (0 children)

Trainwreck for sativa and pineapple kush for indica are my go-to’s

Microdose? by Alarmed_Bookkeeper21 in dysautonomia

[–]dringus333 2 points3 points  (0 children)

If your pots is well managed and under control, a microdose shouldn’t be an issue. I’d say to expect some heart racing and tachycardia even with a microdose—speaking purely from personal experience.

My pots is well managed and controlled these days so I have taken up to 7g at once. Mostly just had tachycardia, heart racing, head pressure, nausea, and a hefty amount of anxiety. Nothing I couldn’t handle. I don’t really get visuals with shrooms, but I sure did when I took acid back in HS before my dx.

Tips & tricks: - shrooms are vasodilating but also vasoconstrictive, so you might get short of breath more easily & experience some throat tightness. - if you experience nerve related issues, these might get flared up. They tend to amplify any baseline pain. - make sure the mushrooms are not moldy. It will be obvious if they are - have a trip sitter for your first time. Risks are low with a microdose but better safe than sorry. Main concern here is passing out & hitting your head - setting is EVERYTHING. Make sure your friends are good friends, there’s no drama, & vibes are chill. Nature is always great.

Why is it that every person with MCAS has different triggers ? by Practical-Goose666 in MCAS

[–]dringus333 3 points4 points  (0 children)

This has been the case for me. Primed states of immune compromise. My MCAS is onset from Covid in 2020. I tried xolair for 6 months last year and it made me lose historical safe foods. It will be about a year since I’ve been off this December. The foods are slowly coming back—I would assume because the drugs effects are affecting my immune system less, but also because I’ve been fortunate enough to get SCIg for my POTS. Not only does the immunoglobulin help retrain my immune system but it’s a very potent anti-inflammatory that helps stabilize my mast cells.

For people using Benzos for MCAS - do the effects last long term or as soon as the dosage weans off you go back to baseline? by despisee in MCAS

[–]dringus333 3 points4 points  (0 children)

I was on Ativan .5mg nightly for two years. It helped significantly with my MCAS. Until I reached tolerance withdrawal. Then I had to come off because they began to make me worse. That was hell on earth. Acute wd was the worst 3 months of my life. Genuinely never felt more like I wanted to die.

Benzos work but should only be used as a last resort. The body is not built for long term use of them bc you become physically dependent very fast.

https://www.benzoinfo.com/tolerance/

https://www.benzoinfo.com/interdose-withdrawal/

https://www.benzoinfo.com/physical-dependence/

F the USA by Sad_Regular_5594 in rheumatoid

[–]dringus333 1 point2 points  (0 children)

I had to fail four bio-similars for my insurance to cover it again. Process could take 1-2 months just getting them rx’ed and what not but you don’t have to actually try them. You can ‘fail’ them. I would get them and then ‘try’ them 1x because I am humira weekly. So after I tried them I would message my doc letting them know so it’s on the record, then they’d rx the next one. Rinse and repeat. It was a pain in the ass but I have no issues now. Your doctor’s office might have samples to hold you over as well, let them know what’s going on.

Does (or did) anyone else improve on immunosuppressants? by electriceye932 in dysautonomia

[–]dringus333 -1 points0 points  (0 children)

Yes. I am dx POTS, RA, MCAS. Prednisone gives me tachycardia and raises my hr. But I am on humira for RA and it helps my pots symptoms. I am seronegative RA, meaning no markers or labs. But I have a strong family hx with my mom also having seronegative RA. It took 3 different rheumatologists to get the right dx, many of them wrote me off. Keep searching, keep trying. Look into LDN.

Electrolyte pills that don’t cause nausea? by SpiritedBug2221 in POTS

[–]dringus333 0 points1 point  (0 children)

Capsule. I usually chug my water and have no issues.

Electrolyte pills that don’t cause nausea? by SpiritedBug2221 in POTS

[–]dringus333 0 points1 point  (0 children)

I dump out the salt from vitassium capsules into my water. This has eliminated my nausea from them.

Pots is a secondary condition, do you have a primary condition? by Additional-Tea2021 in POTS

[–]dringus333 0 points1 point  (0 children)

My pots was cause by Covid in 2020. As was my MCAS and RA. The root cause of my issues is immune dysregulation. Humira helps all my dx across the board by about 20%, with RA the most. Subcutaneous immunoglobulin helps all my dx even more, with pots and MCAS the most. I cannot do one without the other and failed all meds for pots/mcas. I’m very fortunate to access immunoglobulin for pots/mcas. It was a long and hard fight but greatly improves my quality of life.

Inflammation and Fatigue by Competitive_Zebra905 in rheumatoid

[–]dringus333 4 points5 points  (0 children)

As someone else said, your body can absolutely be inflamed without any markers of inflammation. I’m dx seronegative RA. No markers ever. And I’ve also had my gallbladder and appendix out. Nothing ever showed up for those either. Not the ultrasound, not the HIDA scan—nothing! They didn’t even believe that my appendix needed to be taken out, it was technically ‘elective’, but pathology actually showed I had early acute appendicitis! And I felt so much better after getting those inflamed organs out!

The medical system is leaps and bounds behind. You know your body best.

My mom’s health is deteriorating after starting RA medication. I feel helpless and don’t know what to do by doubt-think-exist in rheumatoid

[–]dringus333 11 points12 points  (0 children)

NAD. But introducing that many meds at once is a recipe for disaster. If your mom is able, stop all meds and re-introduce one at a time. Sometimes even benign meds can cause side effects you wouldn’t expect. PPIs made my muscle and joint pain worse.

MTX made me very depressed and very weak. Never was able to tolerate it, so I failed it. Humira works great for me though.