Has anyone taken Ketotifen for MCAS?

[leela]

Well, I finally got someone to address mast cell issues with me. Started Ketotifen compounded in 1mg caps. I have a hard time sleeping, so I started taking 1mg
at night with all my other sleepy stuff. It definitely helps me sleep through the night. I feel foggy, ill, nauseated and hypersensitive in the mornings anyway, so no telling if this has a morning-after effect for me.
I've added a morning dose 2 times thus far and didn't notice much extra sedation, perhaps bc I am constantly exhausted anyway. Maybe a bit of extra tiredness.

Also today just started adding the equivalent to GastroCrom, which is too $$ for me. I followed this formula from a post I found on another forum, and my doc was kind enough to Rx 25g pure cromolyn from my local compunder:

Dissolve just under 1/2 tsp of powder in 4 oz distilled (or at least filtered) water, put in a glass bottle and refrigerate.*
1 tsp or 5 ml of this solution is 100 mgs. That equates to about 23 doses. One can make more than this at a time, but I wanted to experiment before mixing a big batch.

* I noted that it does not dissolve readily in cold/room temp water. It did eventually with time and vigorous shaking, but I think next time I'll warm the water up
so I can be sure the powder is as evenly distributed in the water as possible.

I've only just begun this regimen four days ago, so time will tell.

 

[Gingergrrl]

No, not yet. I am still so sick. I don't want to try anything else right now. My doctor made up a homeopathic of "histamine"...to reduce my reaction to Histamine. They say you can't react to it, I am reacting horribly. Migraine.

@Misfit Toy Am sorry that I am so delayed in seeing this post and that you are continuing to have such a hard time. I have no idea what a "homeopathic of histamine" would be made of (or what it might do?) but it is not something my MCAS doctor, or any doctor, ever recommended it for me- so the fact that it did not work for you is not surprising (to me) and I would not be too discouraged about it.

My doctor does not know how to prescribe things and my immunologist wants me back on IGG. Not IVIG, but IGG. I am scared to DEATH to take it. I reacted horrible to it and she wants me to take it daily. Small amounts daily.

What does it mean that she wants you to do IGG but not IVIG? Does that mean SCIG or something else? Sorry for my confusion.

@Strawberry -the waiting list to see Afrin is 2 years and up. I think you have to be an established patient in order for him to give advice to a doctor.

Although it is true that the waiting list for Afrin is off the charts, he did a phone consult with my main doctor in mid 2015 without ever having met me and I have never been his patient. We were desperate (at that time) b/c I was in the hospital with anaphylaxis to all food but water and felt we had nothing to lose. My doctor called for several days until he reached him and they discussed my case at length. I paid for the consult with Afrin (and it was not free!) but it was worth it. At that time, he had the hospital put me on IV Benadryl 30 minutes prior to eating. This was not a sustainable plan long-term, but it definitely turned things around and I was able to tolerate 4-5 foods without reacting. So it is possible (at least back in 2015) for a doctor to do a phone consult with Afrin although I don't know about now. You know the rest of my story and will not bore you with it LOL.

Well, I finally got someone to address mast cell issues with me. Started Ketotifen compounded in 1mg caps.

@leela How is it going with the Ketotefin now that you have been on it for a few days?

 

[Misfit Toy]

@Gingergrrl -it would be like sub-q of IGG which I can't do it right now and this immunologist has to go. She is making me jump through hoops to get anything done and doesn't even remember my case when I come to see her. I have to tell her everything over and over. Anyway, I am not going back to her. it's a waste of my time and it causes such distress.

I am literally reacting to everything. I am afraid to eat. Yesterday, I was so hungry because to be honest, I am starving on this low histamine diet and I ate so much last night. All low histamine but my hypoglycemia kicked in so I gorged on fruit, etc. I woke up or should say didn't sleep at all last night and was itching all night and then had to run to the bathroom. I have never been this ill.

My legs also feel like they may buckle under me. I feel dizzy and woozy.

I just called my doctor who said to try using baking soda in water to calm my system down. I have had a migraine for 30 days straight. I also feel like all of the meds, the antihistamines, etc...is making me sicker. And the migraine med helps momentarily but the migraine always comes back.

I may try and get an appt with Afrin even if I have to wait two years. I can always change my mind.

I am actually scared that I have mastocytosis. I guess I wonder about that because my symptoms are so dramatic. the rash, the diarrhea, all of it.

I think sometime soon I am going to go to my doctor to also get a saline IV. Just to boost my system.

 

[Strawberry]

I may try and get an appt with Afrin even if I have to wait two years.

If you write them a letter and explain how desperate and ill you are, I'm hoping they will see the importance and get you in quickly. He may be your best shot for now. If they would take patient referrals on your behalf, I would certainly send in a letter begging for him to take you on ASAP, as I am sure many others here would.

Please do, call him, write him a letter with your severe allergies even to your life needing (!) thyroid medications. I'm praying he will see the urgency!

 

[Gingergrrl]

@Gingergrrl -it would be like sub-q of IGG

Thanks for clarifying and I thought you meant sub-q but I was not sure.

I may try and get an appt with Afrin even if I have to wait two years. I can always change my mind.

I think this is a good idea and also check if he still does phone consults with other docs (like he did with mine in 2015). He may not do them anymore but it is worth checking. I am so sorry that you are having such a rough time and my reactions were brutal in 2015 but in remission now so it is possible (even though I would not have believed it at that time).

I am actually scared that I have mastocytosis. I guess I wonder about that because my symptoms are so dramatic. the rash, the diarrhea, all of it.

My understanding is that the symptoms of MCAS and mastocytosis can be identical. Higher severity (even if someone had anaphylaxis multiple times every single day) does not mean it is mastocytosis vs. MCAS. I think what distinguishes mastocytosis (the gold standard) is a bone marrow biopsy but there are other blood markers as well.

Sending virtual hugs that you will be feeling better soon

 

[Strawberry]

@Misfit Toy i just found out on his facebook page that dr Afrin is no longer at the clinic. He hasn't said anything yet about where he is moving to. I hope you are able to contact him somehow soon.

 

[flitza]

No, not yet. I am still so sick. I don't want to try anything else right now. My doctor made up a homeopathic of "histamine"...to reduce my reaction to Histamine. They say you can't react to it, I am reacting horribly. Migraine.

I can't see anyone to really deal with this for months. My doctor does not know how to prescribe things and my immunologist wants me back on IGG. Not IVIG, but IGG. I am scared to DEATH to take it. I reacted horrible to it and she wants me to take it daily. Small amounts daily.

I called the IDF. Immune Deficiency Foundation to try and get answers. IF there is another one I can take. I don't even know if I want to do this.

If I react to one more thing that I try, I am scared I may kill myself. The reactions are awful. I told my therapist that I have a plan in place if I get sicker. I am at my wits end. I have doom reactions and major depression to meds and food. Especially meds. That is worse for me than even food.

For whatever reason, between the T4 and the ketotifen, my body isn't settling down. I am off of them. It's a little better, but a very little and I can't sleep at all. I want God to just take me.

Wow! So sorry you're suffering so much. I think if I were in your shoes and having so many bad reactions to meds, I would start cutting some of them out.

Hang in there!

 

[Michael_venice]

TINY doses of Ketofin seem to just knock me out. Not drowsy, but unable to move.

I keep reading posts throughout the internet with people talking about a) how X antihistamine(s) changed their lives for better (along with avoiding triggers, food) and b) how X anithistamines (including often ketofin and cromolyn, 2 I paid a fortune for and keep trying) made them worse.

If you're already rollercoaster sick, how do you figure out if something is helping? Or even more difficult, I've seen quite a few posts that also say that X medications often make people worse for X period of time before better.

How can we figure that out? I can't.

 

[Gingergrrl]

@Misfit Toy How are you doing? I'm hoping you can update us when you are able to.

If you're already rollercoaster sick, how do you figure out if something is helping? Or even more difficult, I've seen quite a few posts that also say that X medications often make people worse for X period of time before better. How can we figure that out? I can't.

@Michael_venice I wish I knew the answer to your question! In my experience, if I tried a med several times and it consistently made me worse, then I knew it was not the right med for me. In regard to the two meds that you mentioned in your post, in mid 2015, I was put on Gastrochrom (Cromolyn) and even though it did not help my symptoms and gave me severe GI problems, we stuck with it out of desperation. I knew it was not working no matter how much we increased the dose but at that time, I had no alternative ideas. When I finally saw my MCAS specialist for the first time in July 2015, he immediately took me off Gastrochrom and put me on Ketotefin and it was immediately helpful. It globally improved my MCAS symptoms, both chronic and acute, and the difference was striking.

So in my experience, there have been times that I have tried a med and if it was neutral, I would give it a longer trial. Or I might try to see if there was a way to tweak the dose or some other aspect. Like with IVIG, my first infusion led to an unbearable headache that sent me to the ER after ten days but it was b/c the infusion speed was too fast for me. Once we slowed down the speed (from 3 hrs to 7 hrs), I have never gotten that level of headache from IVIG again and it's been an amazing treatment.

But the meds that I've tried that have been horrible from day one, no matter how much we altered the dose or made other changes, have always been wrong for me and I have always ended up stopping them. An example for me is the methylation supplements. I have tried every angle known to man but I simply cannot tolerate them (but others do great with them). I do not believe that anyone should suffer with a med for months if it is making you worse (although something like chemotherapy to save someone's life is of course different).

I am not sure if this is making any sense but am hoping it helps.

 

[Michael_venice]

@Misfit Toy How are you doing? I'm hoping you can update us when you are able to.



@Michael_venice I wish I knew the answer to your question! In my experience, if I tried a med several times and it consistently made me worse, then I knew it was not the right med for me. In regard to the two meds that you mentioned in your post, in mid 2015, I was put on Gastrochrom (Cromolyn) and even though it did not help my symptoms and gave me severe GI problems, we stuck with it out of desperation. I knew it was not working no matter how much we increased the dose but at that time, I had no alternative ideas. When I finally saw my MCAS specialist for the first time in July 2015, he immediately took me off Gastrochrom and put me on Ketotefin and it was immediately helpful. It globally improved my MCAS symptoms, both chronic and acute, and the difference was striking.

So in my experience, there have been times that I have tried a med and if it was neutral, I would give it a longer trial. Or I might try to see if there was a way to tweak the dose or some other aspect. Like with IVIG, my first infusion led to an unbearable headache that sent me to the ER after ten days but it was b/c the infusion speed was too fast for me. Once we slowed down the speed (from 3 hrs to 7 hrs), I have never gotten that level of headache from IVIG again and it's been an amazing treatment.

But the meds that I've tried that have been horrible from day one, no matter how much we altered the dose or made other changes, have always been wrong for me and I have always ended up stopping them. An example for me is the methylation supplements. I have tried every angle known to man but I simply cannot tolerate them (but others do great with them). I do not believe that anyone should suffer with a med for months if it is making you worse (although something like chemotherapy to save someone's life is of course different).

I am not sure if this is making any sense but am hoping it helps.

You are almost always more than helpful, and I mean that for real. Thanks. I feel like I've been a guinea pig for 8 years and dont want to be my own doctor, but I don't know how I could afford to have anyone help me track all of these gremlins that apparently all contribute.

These diseases are so odd to me, just the idea always of 'take this on faith for a long time, you'll probably get worse for a while that we can neither predict or define. But then maybe it'll help'

too many things like that.

 

[Misfit Toy]

@Gingergrrl -I just found out today that I am in menopause. OMG. Just like that. I have been so sick and last week went to the ER. Migraine for 30 days and itching. The IV was like a miracle. It was zofran and torodal with saline. My itching subsided and my migraine left and I felt so much better. I felt better for days and then it stopped.

Now, I am itching again. I am starting to wonder if I am allergic or reacting to other things like sailcylates. Also, I am also thinking that this menopause (no period for 3 months) has made me super sick. It correlates exactly with the exact same time of the MCAS.

So, I am thinking of giving up salicylates. I don't know...we will see.

My two worst symptoms are itching and insomnia. I am losing it. Thank you for checking in. Afrin is not taking new patients right now since he has no idea where he is going. I will have to wait to see Anne Maitland in NY.

 

[Sancar]

@Misfit Toy ~ you poor dear... SLEEP is essential to everyone ~ especially PWME!

Have you tried Zolpidem? There is an article out today on Medscape with new data that shows how it can be effective in a number of neurological disorders. I know Dr, Bateman uses it in many of her patients protocols.
It's wonderful for me. Especially when I have bad insomnia.

Reducing or removing salicylates is also a good idea. I do my best to avoid them. I make sure they aren't in my soap or shampoo either.

 

[flitza]

TINY doses of Ketofin seem to just knock me out. Not drowsy, but unable to move.

I keep reading posts throughout the internet with people talking about a) how X antihistamine(s) changed their lives for better (along with avoiding triggers, food) and b) how X anithistamines (including often ketofin and cromolyn, 2 I paid a fortune for and keep trying) made them worse.

If you're already rollercoaster sick, how do you figure out if something is helping? Or even more difficult, I've seen quite a few posts that also say that X medications often make people worse for X period of time before better.

How can we figure that out? I can't.

Exactly this is the problem we all have with so many therapeutic interventions we try!

 

[joyce.swing]

Thanks, @Gingergrrl. When you say "cromolyn (Gastrochrom) did nothing for me except GI problems", do you mean that the cromolyn helped with your GI issues or gave you problems? Also, how long did it take before you no longer felt sedated by ketotifen? I appreciate your insights.

Mercifully, I haven't had the symptom of anaphylaxis. You know how folks often offer the platitude, "it could be worse" when you express distress over something? I've never found that comforting advice because I find myself terribly empathetic to the suffering of others. I suppose the implied meaning is supposed to be about gratitude for your own blessings.

Anyway, my MCAS symptoms manifest as headaches, asthma, GI problems (stabbing pain & occasional nausea and diarrhea), bladder irritation (I feel like I have to pee desperately all of the time), and hypotension. There may be particular food sensitivities, but I haven't been able to pinpoint them yet. I feel sick often after I eat and I need to be conscientious about keeping a log. I've tried elimination diets, but haven't observed anything remarkable yet.

The diagnosis of MCAS came to light after one year of treatment with low dose naltrexone for CFID & cell-mediated immune deficiency. My first immune panel pre-treatment showed my natural killer cell count was extremely low and the cell activity level was below the 10th percentile. After one year taking ldn, building slowly to a dose of 4.5 mgs, which I've been on for about four months now, my cell count was still very low, but the cell activity level shot up to about the 60th percentile! Many symptoms of CFIDS had improved marginally (as y'all can attest, marginal improvement is huge for us), but since all the aforementioned symptoms remained, my doc concluded the diagnosis of MCAS and prescribed the ketotifen and cromolyn. She had prescribed midodrine for hypotension earlier, but I was unable to start it because I became sick with asthma for several weeks and since the asthma drugs tend to increase the heart rate, I didn't want to take anything else that might have exacerbated that.

Yesterday was really a venting session for me. Thanks for listening! I hadn't slept properly in over a week and felt much sicker than I had before I started taking the keto. I've decided to back way off and introduce one drug at a time, starting with cromolyn. I did not take a nighttime dose of keto last night and feel a bit more alert today. I'll try taking just the cromolyn for a few weeks and report back on the results. I hope it helps to alleviate some or all of my symptoms.

You do not mention dietary changes - have you made them? I have had the most help with my symptoms with a pretty strict low histamine diet. I am esp strict with how I handle proteins - get them very very fresh, or fresh frozen, cook and then immediately freeze what ever I do not eat right away. It is of course very limiting but a relief.