Anyone try ketotifen for Long Covid?

I just came across your question when doing a search on ketotifen. Yes, I am currently taking it as part of a long Covid protocol. I'm taking a compounded dose of 1mg 2xday for 30 days. I don't think this one will be refilled. It makes me drowsy but I'm getting more tolerant of it.

The long Covid clinic in Birmingham Alabama has me on 9 meds right now. This one and ivermectin were the two compounded ones and most expensive.

It has only been a week. I think I'm improving but a little too soon to tell.

Thank you for your message. I have had a surprising result with ketotefin. I found that while it did not reduce my day to day symptoms of fatigue and headaches, that it does seem to reduce the frequency of crashes. I am only taking 0.5mg/day but I crash a lot less than when I am off of it.

Wow, 9 different medications seems excessive. Although I am sure there is a reason for each RX.

bhamster33: I have submitted an application for the Birmingham COVID Clinic and read that it takes approximately 5 months to get the application reviewed. Is that the case that you experienced? Also, if possible, could you list the 9 meds you are on with dosages? I have had long COVID since 1 March of 2022 and have had little to no luck with local doctors. Hopefully, the Birmingham application will be approved soon. Thank you.

So sorry to hear how long you've been dealing with this. I had only been dealing with 3 months of mysterious symptoms and being treated by some docs as though I were imagining things or being a hypochondriac. My own PCP told me to "go home and relax"--being unable to drive from dizziness had already kept me home for 6 weeks!

I was fortunate in that a friend spoke to another friend who had experience with Dr. Jordan Vaughn and PA Katie Taylor at MedHelp here in Birmingham. They told me it would take months to get into see Dr. Vaughn, so I should try to make an appt with Katie. When I called I was told it would take 2 months, I started crying and had to give the phone to my husband. He was put on hold forever but when the lady came back, she had an opening in 2 weeks. Maybe crying helps? 😉

So this was just 2 weeks ago for me. I wasn't impressed by the place: it was by all appearances an urgent care center. We had to wait hours before being called, and my husband and I were getting more and more annoyed by the minute. But by the end of my time with Katie (4 hours total), we had done a 180. The man who did a breathing test on me told me that people come from all over the world for this. He was a little surprised that I was local.

Anyway, the list of my meds says that these are personalized to me. My main problems were dizziness, headache, fatigue, some chest soreness (I don't have asthma but it's how I imagined asthma might feel--trouble breathing). And I almost didn't bring it up because I thought it was completely separate, but I told her that I had started having allergies like I've never had in my life. Felt allergic to my home, the cats, the cat litter, etc. Nose running all the time. I had just finished a round of a steroid nasal spray that dried me up but I could tell it hadn't taken care of the root of the problem. Still felt allergic.

Without missing a beat, Katie told me that many long COVID sufferers also complain of sudden onset of allergies. She spoke a lot about histamines, but I'm afraid I understood very little.
Honestly, I've never had a doctor or PA speak so much science to me. I'm pretty good at understanding medical terminology, but I was completely lost and really couldn't understand of what she was telling us. My husband told me later that from what he could tell, the prescribed medicines would be working to thin my blood (from microclots causing "sludge"), get oxygenated blood to my brain to clear the brain fog and clear my lungs.

Chest x-ray did show I had inflamed lungs. They took tons of blood, and we had to wait for a few results before we could see Katie: she wanted the cardiac results. Those results did show the presence of clots (the D-Dimer, I think). I'll see her again in 2 weeks to discuss the rest of the results that appear to have been sent to a lab in Huntsville.

My chest doesn't seem better right now, but the headache and dizziness are gone. I think my brain fog is a little better. My sinuses are definitely better. One thing I did not tell her about because, again, I thought it had to be a separate issue, but I haven't been able to get used to my new glasses. I have read that long Covid can affect your eyesight, but I had hoped that would only be in extreme cases. I have a very difficult/expensive prescription: my new glasses cost about $750, and I've had to have them redone but I still don't feel comfortable with them. I am praying it's the fault of the lab and not that my eyesight has changed.

Anyway, sorry to be so long-winded, but now I will give you the list of meds. I just wanted to tell you what my symptoms are so that you won't assume these meds would be exactly the same for you.

Coagulation and Fibrinolysis (I still haven't looked up fibrinolysis. I have a history of DVT, so coagulation I understand):

1. Baby aspirin twice a day
2. Eliquis 5mg tablet split to take twice a day
3. Pentoxifylline 400mg twice a day
4. Nattokinase 100mg twice a day (empty stomach)

Mast Cell Activation and Stomach Protection:
1. Quercetin 500mg twice a day
2. Famotidine 40mg twice a day
3. Ketotifen 1mg twice a day
4. NAC, 1 tablet twice a day
5. Ivermectin for 14 days (with food)

The Ketotifen and Ivermectin were compounded and the most expensive, but I won't need to refill them. Interestingly, ketotifen is the same as Pataday eye drops--making it an antihistamine.

I am pretty certain that if you look up each one of these items with "______ and long Covid," you'll find scientific articles giving the reasons for being prescribed.

There are tips for dealing with worsening symptoms which they said to expect for 2-10 days after starting, but I didn't feel much worse at all. I didn't feel great, but I was expecting to be bedridden which I wasn't.

Hope this helps! I also hope you don't have to wait 5 months. My only guess is that perhaps Dr. Vaughn is the only one who can treat people out of state. I've had difficulties trying to get appts with doctors in GA or TN--not all are licensed to treat an out-of-state resident.

I’m with Dr Vaughn as well. Any idea how I can get help with paying for eliquois?
Janet

Thank you so very much for your reply. I will try to call the clinic in addition to the email I sent them. I don't know if I'll cry...but I could start breathing heavy to see if that works (lol). Thank you again.

I have started ordering my prescriptions from Safe generic Pharmacy. It takes awhile as they are out of India (they supply a LOT of medicines to the US). I have had real good experiences with them. If you want to try them, go to safegenericpharmacy and search for apixaban.

I haven't found out how expensive it is yet as they had a coupon that got it for me free. That will cover 4 months as I'm only taking half of one pill.

My brother has a history of blood clots like me and is on warfarin. He said he'd love to do Eliquis if it weren't so expensive. That's when I looked at my receipt and saw 0.00 for it. My husband and I were so overwhelmed with all the information and the 4 hour duration --and no breakfast -- that it wasn't until then that I remembered the pharmacist saying she had used a coupon for me. I should call and find out just how expensive it will be after this bottle.

what symptoms does it help with?