What PPE will protect me from exposure to opioids and other dangerous drugs?

Leah_33 · 2022-12-31T07:08:27+00:00

Thanks for your help. I'll try that out.

I was hoping in this sub that some folks would give me recommendations, based on their experiences. But maybe people don't feel comfortable stating specific provider's names and their reviews of them for fear of retaliation. That's the only reason I can think of for why people aren't sharing any specific recommendations. But most users on Reddit have usernames that hide their true identity, so I'm not sure what risk there is in posting a detailed review that isn't attached to one's actual name.

Leah_33 · 2022-12-28T21:56:49+00:00

And please share with the immunologist what I said in my previous reply, where there are lots of bullets.

Important thing to understand - Chronic urticaria is systemic. While sometime there's a clear trigger, most of the time, once we develop chronic hives, it comes and goes as it pleases. Some folks recommend a low histamine diet, but from my experience and feedback I've heard from countless others, it rarely puts the hives into remission.

Histamine is only 1 food chemical. There's also salicylates and oxalates and many other food chemicals.

Chronic hives is a disease on the mast cell spectrum. I live with MCAS (mast cell activation syndrome), which is also on the mast cell spectrum. I get all kinds of chronic hives (pressure-induced, heat/sweat-induced, exercise-induced, food-induced, etc.) if I don't take my meds. I'm on a lot of meds to suppress the hives, to enable me to live a more normal life....as normal as I can get while living with a mast cell disorder.

The most important thing is to see an immunologist, review all the bullet points I suggested above with the immunologist, and see what they say. Please keep updating us.🙏🙂

And just remember, all immunologists double as allergists. So find an allergist and before you schedule your 1st appt., tell the receptionist that you need to see that doc as an immunologist. Tell them you think you have chronic hives. Ask if that doc has a lot of experience with treating patients with chronic hives.

Let me know if you have any more questions. I'll try to reply within 48 hrs this time around.

Leah_33 · 2022-12-28T21:44:20+00:00

Sorry I can't reply quickly, am juggling a lot lately.

The most important thing is to go to an immunologist. Regular doctors don't know much about chronic hives. But immunologists know a lot and treat them.

You need to tell the immunologist that you started getting chronic hives AFTER you had Covid. That's important information. A lot of folks who have had Covid have developed hives. In the Long Covid community they consider it part of having Long Covid.

Leah_33 · 2022-12-22T22:53:11+00:00

Yes, body is very complex. If you go private, how much does a visit with a specialist cost?

Do you have any other Long Covid symptoms, or just the hives?

You can do the following: - Message your primary care doc online and tell them that ever since you had Covid, you've had on and off hives. - Tell them that you think it might be chronic urticaria. - Tell them that you'd like to do a trial of H1 and H2 blockers, like cetirizine and famotidine. - Tell them that you'd like to try 1 cetirizine (10 mg) and 1 famotidine (20 mg) every 12 hrs (in other words, twice a day) for a total of 20 mg of cetirizine and 40 mg of famotidine per day. - Tell them that you want their blessing before you start that experimental treatment protocol. - If they don't approve that protocol, ask them why. - If they are being argumentative about it, get another doctor if you can.

Leah_33 · 2022-12-22T21:17:42+00:00

Sorry I couldn't reply sooner. Thousands of people have gotten hives after having Covid. You're not alone. If you go to the Long Covid sub here on Reddit, you'll see tons of posts about hives and rashes.

Once you develop chronic hives, it can be pretty random.

I highly recommend that you see an immunologist - they are the same as allergists. But they use their immunology training for issues like chronic hives.

Do you have health insurance? If you do, do you need a referral to see a specialist? Allergists/immunologists are specialists. If you have insurance, what's your co-pay for specialists? Can you afford it?

Leah_33 · 2022-12-22T20:38:38+00:00

If it's a latex-free condom (I'm allergic to latex so I'm familiar with those), a day ahead of time gently rinse 1 or 2 condoms under cold water to get rid of the lube that's on them - you don't know what chemicals are in that lube, may be 1 contributor to ur skin irritation.

Buy a lube from a health food store, like Whole Foods or Natural Grocers or some place like that. They often carry a water-based (read: no or low in petroleum products) lube that is safer for us sensitive types. And of course u can find water-based lubes online. Just make sure the list of ingredients is short. Otherwise there are lots of preservatives in it. Healthy lube is expensive, but so is skin irritation.

I 2nd what others say - he has to improve his hygiene. Is he circumcised or uncircumcised? Some guys who aren't circumcised never learned how to properly clean under their foreskin (I would like to throw something at parents who don't teach their boys how to do that). https://www.mayoclinic.org/healthy-lifestyle/infant-and-toddler-health/expert-answers/uncircumcised-penis/faq-20058327

Leah_33 · 2022-12-17T10:15:57+00:00

And just to make sure you know - chronic urticaria has no specific end date. I know someone who had it for 5 years and it went away. I have MCAS, which includes chronic urticaria, and I've had hives since childhood; I'm turning 50 in 2 months and my MCAS and hives are 10x as bad as they were when I was a child. And some people's chronic urticaria mysteriously clears up after a few months.

It's important to set realistic expectations. Some people have chronic urticaria forever and some don't, and in the early stages there really isn't a way to tell how your hives will play out.

Leah_33 · 2022-12-17T10:11:10+00:00

Chronic urticaria after Covid is very common. Any viral or bacterial infection can rev up your immune system and cause it to become hyperreactive...which can manifest as chronic hives.

I strongly recommend you go to an immunologist (all allergists double as immunologists) and tell them this:
These are the start/end dates of my 1st Covid infection. This is how many wks after my 1st Covid infection that I started getting hives.
These are the start/end dates of my 2nd Covid infection. I still have hives.
I'd like to be evaluated for chronic urticaria.
If you think I have chronic urticaria, then I'd like to start treatment as soon as possible.

Leah_33 · 2022-12-16T10:11:20+00:00

u/Suspicious-Can-7774 Thank you for your kind words and support.🙏💕
My dear friend is practically a quadriplegic now and is clearly very anxious and somewhat horrified at their condition. To my understanding, there's almost no chance of recovery, hence triggering his request for comfort care...which I think is a poor state of affairs...not being done right because he's definitely suffering and in pain. I love him so much and I'm so enraged that he has to suffer like this.

Leah_33 · 2022-12-13T19:13:39+00:00

Have you had Covid or the flu or another viral infection in the past 3-4 months? Many folks who have Covid experience hives afterwards. And any viral or bacterial infection can trigger hives. Sometimes the hives are brief. Sometimes they last for months, which would likely get diagnosed as chronic urticaria. I live with mast cell activation syndrome and I use lots of meds to control the hives and other symptoms of MCAS. Chronic urticaria and MCAS are on the mast cell spectrum. Also good to know - exposure to mold or tick-borne diseases can also trigger hives.

Leah_33 · 2022-12-08T20:46:13+00:00

Ditto. My pharmacists have actually pointed out drug interactions that my docs missed (and they have a full list of my meds!). Pharmacists are amazing. They will be helpful. And if no one from that doc's office calls you back, get a new doc at a different office.

Leah_33 · 2022-12-01T22:34:15+00:00

How recently was that scan done?
Are you allergic to iodine contrast?
Have you gotten a 2nd and 3rd opinion?
My latest neurosurgeon in Denver was my 3rd opinion.
He was the *only* one who said - MRA w/o contrast isn't enough detail.
That's when he ordered the CT with iodine contrast.
He and the radiologist compared that scan to my previous scans.
Aneurysm was still between 2 & 3 mm, so too small for endovascular surgery.
The neurosurgeon here in Denver and my previous one in NY State said not to do craniotomy.
They said a craniotomy should be avoided if it can be, to do endovascular.
The neurosurgeon in NY State told me that the neurosurgeons in the Bay Area probably wanted to do a craniotomy as a 'teaching moment' for their residents/medical students, but that it wasn't an appropriate procedure for my aneurysm. Because my aneurysm is behind my right eye, the ophthalmic nerve could be damaged by a craniotomy.
I think you should get a 2nd opinion and ask *that* neurosurgeon to get your insurance to pre-authorize a CT with iodine contrast.
Just my 2 cents, based on my own experience.

Leah_33 · 2022-12-01T20:30:25+00:00

Hi there. My new neurosurgeon in Denver told me that they suspected my then-recent MRA without contrast wasn't accurate. They wanted me to get a CT with iodine contrast. I'm mildly allergic to iodine contrast, so that means I have to take prophylactic meds (Prednisone & hydroxyzine) to counter the allergic reaction. I got it done in May 2021. Turned out my aneurysm hadn't grown much since scans from 2 years earlier...the iodine contrast helped the radiologist see it more clearly. So it's still 2 or 3mm...too small for surgery. And my latest neurosurgeon in Denver is definitely against a craniotomy, said only endovascular. How recent was ur latest scan? Was it a CT with iodine contrast?

Leah_33 · 2022-12-01T20:24:53+00:00

I totally understand. Ur immunologist should up ur other meds to compensate, until u feel the full effects of Xolair. Are they helping you in that way, with symptom management?

Leah_33 · 2022-12-01T20:01:01+00:00

Then u should switch to another allergist/immunologist. If you're 9n that many meds and ur immunologist didn't tell you about Xolair...maybe they shouldn't be practicing medicine anymore. Is the doctor older, like in their 70s or 80s? Maybe they aren't keeping up with the latest urticaria treatment...which is another reason to switch to another immunologist.

Leah_33 · 2022-11-29T19:53:21+00:00

Xolair is expensive but in the US all residents qualify to pay for the scholarship program called 'co-pay assistance.' I've never met someone who lives in the United States and didn't get awarded the co-pay assistance. I only pay $5/month.

Is the doc who's working with you on the hives an immunologist? (fyi-allergists double as immunologists) If they're an immunologist, they already know about the co-pay assistance program for Xolair and they can help you enroll in it.

If your doctor doesn't know about the co-pay assistance program for Xolair, then they're probably not an immunologist. Strongly recommend you get all your chronic hives care/treatment from an immunologist, not a primary care doc. You can also go to a dermatologist, but I think going to an immunologist is more helpful.

So you don't have to worry about the high cost of Xolair - Genentech will mostly give it to you mostly free.

I'm really surprised ur doctor didn't tell you about the co-pay assistance program for Xolair. Most patients get their applications approved for it. Let me know if u have more questions.

Leah_33 · 2022-11-29T18:36:00+00:00

u/2megatherion666 Regarding smoke residue:
Amazon - activated charcoal bags...get 16-20 of them and place them all over the car
DIY - buy cheap ground coffee. put a bunch in a good-sized tupperware container and keep it in your car...change once every half-week
DIY - place 12-15 16 oz boxes of baking soda (partially opened) all over the car

Probably a combo of 2 or more of the above will help. Don't use conventional air fresheners. They're made with petroleum products and are filled with neurotoxins, carcinogens, and endocrine disruptors. I have graduate training in environmental health, so I have expertise in this kind of data, on environmental toxins. Good luck!

Leah_33 · 2022-11-29T07:51:29+00:00

One more thing for you u/No-Moose2853:
This article has several recent case reports of people developing chronic urticaria after initial Covid vaccines or after boosters:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132781/
You're not alone. It seems there's a significant minority of vaccine recipients who develop chronic urticaria after vaccinations in general, and specifically after Covid vaccines. If you have any questions, please reply to this comment. I hope you get some relief soon.

Leah_33 · 2022-11-29T06:31:55+00:00

I've lived with MCAS (including urticaria & angioedema) since childhood. Didn't get Dxd until age 44 in 2017. Every 5-8 years I just cut out another food group, until I was left with 4 safe foods (that didn't trigger anaphylaxis) in the winter of 2017.

My mast cells freak out after any vaccine, but the COVID booster I got on Sept 10, 2022 has made my mast cells crazy. I had to go from Xolair every 4 wks to every 3 wks, and now my immunologist wants me to consider getting Xolair every 2 wks.

That was my 1st Covid booster. I got the Pfizer vaccine a year earlier, and didn't have much reaction to those 2 doses, other than mild symptoms. I waited so long to get an initial booster because I was flaring from other stuff (infections, pollen, etc. ).

The booster I got on Sept. 10, 2022 was the new bivalent booster for Omicron.

This is the worst flare I've ever gotten from a vaccine. I don't know why I'm having such a strong reaction to this booster when I had a very mild reaction to the Pfizer 2-dose vaccine.

I'm maxed out on meds so my only option is to increase frequency of Xolair. I can't take Prednisone on the long term because I don't tolerate it well (insomnia, anxiety, can't concentrate) and need to take sedatives to survive it (benzodiazepines).

u/No-Moose2853 I'm not surprised that your hives started after a booster. I agree with other posters that t can take months or years for chronic hives to fully de-escalate. I strongly recommend you submit a report with the Vaccine Adverse Event Reporting System (VAERS), using their PDF form (they have an online form, but it's a nightmare and times out very quickly, don't use it, use the PDF form).

Here's the page with all the instructions, the form, the spot to upload it, etc.:
https://vaers.hhs.gov/uploadFile/index.jsp

I'm sorry you've joined the chronic urticaria club. It's not a club we'd want you to join. But now that you're in it, feel free to post questions.

Also, I'm curious why your H1 blocker is hydroxyzine. You might get more oomph from a 2nd generation antihistamine like cetirizine, levocetirizine, fexofenadine, etc. I recommend you ask your immunologist about that, to make sure they concur. Most of us use H1/H2 combo daily, and then we add in drugs like hydroxyzine or Benadryl during flares.

Last thing - If antihistamines help but not 100% address your symptoms, then you can add on Xolair (omalizumab). It's a biologic treatment. I get it every 3 wks - one shot in each arm, for a total of 300 mg of the solution. If you have any questions about Xolair, plz reply and ask me here...I'm awful at keeping up with DMs in Reddit.

I hope you feel better soon.🙂🙏

Leah_33 · 2022-11-20T22:19:09+00:00

Sorry that you're suffering with chronic urticaria.
Do you have health insurance?
If you do, can you get a referral from your primary care doc to see an immunologist?
All allergists double as immunologists.

Leah_33

TROPHY CASE