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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Medicines >> Which one first: Ketotifen or Singular http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1309314885 Message started by Susan on 06/28/11 at 15:34:45

Title: Which one first: Ketotifen or Singular
Post by Susan on 06/28/11 at 15:34:45

Yeah! I just got back from my doctor, and he prescribed Ketotifen and Singular for me to try. I am still having quite a bit of trouble with pain, especially in my joints, fatigue, and itching. He wants me to start with one to try, then later add the other. Any ideas on which might be best to try?

This is the doctor who is treating most of my conditions. He is very happy that the antihistamines are helping so much. He has a plan now to try to get my immune system settled down before we go after any of the old infections. He especially wants me to get out of pain.

I'm on board with that!

Title: Re: Which one first: Ketotifen or Singular
Post by Starflower on 06/28/11 at 15:51:31

Sounds like a good doctor and a wonderful appointment!

Singulair has been a HUGE help to me as far as fatigue goes, but I would say (if you're only going to try one drug at a time) try the ketotifen first... mast cell stabilizers are the best for overall relief. Can you follow that up in a few weeks with Singulair? How soon until the next appointment?

Heather

Title: Re: Which one first: Ketotifen or Singular
Post by Susan on 06/28/11 at 16:55:47

Hi Heather,

Yes, I can add the next one in whenever I am ready. I have prescriptions for both, plus for 300 mg Zantac. I like to give new meds a little time, so I know what it is doing. Even when it works, it helps to know which is helping what.

I won't see him again for a few months, but can always ask questions in between. I get special treatment because I work in the office, though I try not to take too much advantage. By the next time I see him for an appointment, I will have had my GI biopsies, so will know more about what is going on.

Title: Re: Which one first: Ketotifen or Singular
Post by Susan on 06/29/11 at 11:33:45

I got the call from the pharmacy about the ketotifen. My doc has ordered 2 mg capsules, and to take them 3 times a day, so 6 mg daily. The pharmacist recommended I start out with just half a capsule, and take that once a day at night till the tiredness from it fades, in 5-7 days.

Is that what people taking it experience? I know my doctor has people on this, but he doesn't know if they have mast cell disorders, he is just looking at lowering overall inflammation. I want to make sure I don't over do it.

Title: Re: Which one first: Ketotifen or Singular
Post by Lisa on 06/30/11 at 01:13:03

Hey Susan,

I take my 6mg of Ketotifen all at night!! And all at once. I don't find that there's any mystery about how and when. I also take Singulair 10mg 2x/day and I take it in the AM with my other meds and at 6pm with those as well. The Ketotifen I take before retiring for the evening due to the fact that it makes me sleepy. No biggie.

Lisa

Title: Re: Which one first: Ketotifen or Singular
Post by Susan on 06/30/11 at 18:53:41

Thanks, Lisa! Now I know I have some options. The pharmacist was telling me to take it before meals, as it helps with the reactions to foods. He also said to start taking it at night because of how it makes you tired. So I guess it depends what you are trying to affect. I'm happy to hear how much you are taking. Sometimes my doctor prescribes the highest does, but he always expects me to go slow. We just had so many things to cover at the appointment, he didn't tell me what he planned for ketotifen.

Title: Re: Which one first: Ketotifen or Singular
Post by larken on 07/02/11 at 22:13:16

Hi Susan,
Glad to hear you have such an open-minded doctor. My official diagnoses are fibromyalgia and chronic urticaria, but I have a whole range of mast cell activation symptoms. I tend to react to strongly to medications (and most triggers).

I started Ketotifen a year ago at 1 mg and that was too much for me. I was very tired during the day and felt hungry all the time. My doctor told me to cut back to .25 mg at bedtime (I broke a whole tablet into quarters) and take that for a month or so. I've done that and, while I probably didn't get the full benefit for a couple months, it helped a lot with side effects and made it tolerable. I have slowly increased and now I am up to 1.5 mg at bedtime. It's been this careful balancing of taking just enough to be effective, while not so much that I feel the side effects. I just let my body guide me. I may eventually need--and benefit even more from--4 or even 6 mg, but for now I am seeing decent benefit from 1.5 mg (plus antihistimines). I should add that it has not taken away my reactions completely, but does help a lot so I am not so sensitive.

Also, I have heard from others that the benefits build up over time, so the longer you are on it, the more you will stabilize the mast cells and have less reaction to your triggers.

Of course, each person is unique on these things, so balance your doctor's advice with your own tolerance for the med.

Best of luck -- I hope it works well for you!

Larken

Title: Re: Which one first: Ketotifen or Singular
Post by Susan on 07/04/11 at 14:37:59

Larken, thank you for that info! My pills are 2 mg, but they are capsules. The pharmacist (who also takes ketotifen) told me that would probably be too much for me, and to start at a lower dose at night. I can just dump some of the med into an empty capsule. He also said to stay at the lower dose till the symptoms (fatigue and increased hunger) subsided, and then I could slowly increase. Sounds like that is the way to go.

My doctor thought I might as well wait until I have the GI biopsy on the 14th, as he doesn't want any testing thrown off by starting the ketotifen. I figure I've been sick for 18 years, I can wait a few more days. I have the pills, so as soon as I am out from the procedure, I can take them that night. I am interested to see how I respond. I have learned not to expect miracles, so any relief will be gratefully accepted.

Title: Re: Which one first: Ketotifen or Singular
Post by mikev on 07/06/11 at 06:04:46

Ramona:
I'm going to but in on this thread as printed out your info on the topical skin treatment, but can't find your orginal post. I have my doctor, of course his first reaction was negative looking into the
sodium cromoglicate(SCG). From what I've found it pharm name is Altoderm. I can't find if it's FDA approved, it looks like the study was done in England though. What a surprise Europe would be ahead of the US. This looks promising for those of us who suffer skin pain.
Thanks for finding it & as soon as my doc gets back to me, once again as he silently curses me for exploring new avenues for my symptoms, I'll post his answer.
mikev
PS: on this thread Susan, I know Heather likes her singulair, actually enough to convince me to change to it, but if my doc was as smart as yours he would have put me on gastrocrom or in your case ketitofin with singulair at the same time. Would like to know if you go on the ketitofin if you go pill versus liquid. The pill's inactive ingredient is corn starch which is very high in sulfites if you issues there. The liquid doesn't have them & I'm trying to get my doc to let me try the liquid.

Title: Re: Which one first: Ketotifen or Singular
Post by Riverwn on 07/06/11 at 07:24:09

Hi Mikev!
Here is a link to Magic Masto Lotion;
http://www.mastopedia.com/tiki-index.php?page=magic+masto+lotion

There are 3 different recipes, all based on sodium cromolyn in any form.
Hope this helps!
hugs
Ramona

Title: Re: Which one first: Ketotifen or Singular
Post by mikev on 07/06/11 at 10:37:56

Ramona:
Thanks for the link. I've used vanicream before but it like glue & to spread it created enough friction to cause discomfort. They used to have a vanicream lite. Which I had myself, just watered it down so was usable. I think I saw vanicream in walgreens the other day, so maybe I'll check it out again.
MikeV

Title: Re: Which one first: Ketotifen or Singular
Post by Susan on 07/06/11 at 14:08:29

Hi Mike!

Happy to have you butt in! Your symptoms are enough like mine, I am always interested in reading what you are trying.

The ketotifen prescribed is the compounded form from Clark's pharmacy. Not sure if that is what you had. They come in capsules. I don't really know if I react to corn or cornstarch, or even sulfites, but I will watch for reactions.

I was reading the sheet they send on what to watch for, and saw a description of your burning feet as one of the known side effects of ketotifen. So watch out, if you decide to try it again. It may be more than sulfites that caused your symptoms.

I've been holding off on starting, as I have a endoscopy with biopsy on the 14th. I don't want to do anything that would jeopardize a clear result on the biopsy. Anybody know if the ketotifen or the Singular would change possible results? I'm willing to wait if it is important, but if not, want to get started trying this.

Title: Re: Which one first: Ketotifen or Singular
Post by Patricia on 07/06/11 at 14:27:06

I forgot to put singular in my husbands medicine box and by day 4 there was a significant difference in his energy level and stomach issues. Oops but I guess now we know it really works for him. He takes his in the morning with his other H1/H2 blockers.

The ketotifen he takes 4mg at 6pm and it doesn't make him tired and we haven't noticed that it makes him hungry. It'd be nice if he gained a little weight since hes lost 30lbs since he got sick. I just started giving him 1mg of ketotifen with his am meds because it didn't make sense to me that he took 4mgs at 6pm only, shouldn't his mast cells be stabilized all day? So we are trying some in the morning and we'll see what happens...It does say that ketotifen can make you tired so maybe start taking before bed or in the evening. We have found this drug very helpful and he didn't have any reactions. Sometimes if his stomach issues start up we take an extra one and it seems to help.

Does anyone know how long the ketotifen lasts? even though he's taking antihistamines that say 24 hours they only protect him for 6 to 7 hours if were lucky.

Title: Re: Which one first: Ketotifen or Singular
Post by Lisa on 07/06/11 at 16:41:12

Hi Patricia!!

As to singulair, INCREDIBLE MEDICINE is that stuff!! If I go without it, I will go into anaphylaxis after several days!

As to Ketotifen, it has two properties, that of an antihistamine and that of a MC stabilizer. It takes approximately 6-8 weeks to fully come up to strength. It is absorbed, I believe, only partially or it's that the body can only metabolize a certain amount. This is why it doesn't really matter when you take it as long as you keep taking it. We don't take it so much for it's antihistamine properties, for for the MC stabilizer properties. And yet, the antihistamine part of it will make you sleeping - it crosses the blood-brain barrier. So, the antihistamine action of Ketotifen lasts only 8 hours, which is why some doctors will say take it 2 times a day, but I take it all only at night since I'm sensitive to meds that make me sleepy. I function better this way.

I, personally prefer the 8/12 hour antihistamines, Patricia. I take them at 6:00 am, then again at 6pm. However, recently my dermatologist decided to break up the party a bit and I began taking my PM dose of allegra at 2pm and we added another antihistamine at 6pm to replace the allegra.

When your husband is doing a lot more reacting, the important thing is to not spend a waking hour without having some kind of an antihistamine every 6 hours, this is best. If he takes his meds at 7AM, then by 1 or 2PM he's probably needing a boost, then to take his meds again by 7PM. Then, if you take the meds which make you drowsy no later than 9 or 10 pm, then they help you with your sleep and they get you through the night. If you have a 24hr antihistamine, this would be best to put in the middle of the night - midnight perhaps. This way when it's tapering off, you're at your lowest energy usage time period of the day and it won't end up leaving you in a bad spot were you to have a really tiring day. It will help you get through your more demanding day hours.

I hope this helps!

Lisa

Title: Re: Which one first: Ketotifen or Singular
Post by Patricia on 07/07/11 at 01:11:11

Thank you! Why can't they write that in the insert!!!

We've learned the hard way that my husband was seriously under medicated. He takes levoxyl at 5am, then at 6 his am antihistamines, then at 2pm Zyrtec, then at 6pm his ketotifen and H2, protonix, then before bed doxepin and sometimes atarax if he's been really reactive. Lately we've had to add benadryl when his stomach starts acting up or he seems reactive...I think this heat has been a real problem for him.
We are very careful to stay inside during the day ect...but sometimes just going to get the mail will make his stomach gassy and crampy.

We hope that someday we can cut down on some of these drugs and it goes against everything I know to give him so many but the more he has the better he feels. I'd rather have him over medicated and less reactive than vice versa.

Thanks again for your very helpful information!

Title: Re: Which one first: Ketotifen or Singular
Post by Susan on 07/20/11 at 10:27:15

I've been taking the ketotifen for almost ten days now. I started out with splitting up a capsule to take about .5 mg, but didn't notice anything negative, no sleepiness, so moved up to the full 2 mg capsule, then added on to 4 mg, and today will take the full 6mg prescribed.

I can't tell if it is helping my gut yet, as I had three GI procedures that triggered my gut recently. I am recovering faster from the last procedure than I did from the one when I was first starting ketotifen.

My skin itching is MUCH improved, and the rashes have faded, whereas ten days ago my wrists were raw.

I am also noticing that the terrible joint, tendon, and ligament pain I had been having is gone unless I push the joint too hard. That is such a relief, as the pain was making me miserable, and my pain medication was not working unless I took a lot extra.

I've held off on the Singular. I tried it one night, but woke up with a terrible headache. Don't know if it was from the Singular, but decided to get fully established on the ketotifen first. It is possible the headache was still residue from the anesthesia they used in my endoscopy. Since the ketotifen is helping so much, it makes it easier for me to wait for the Singular.

Title: Re: Which one first: Ketotifen or Singular
Post by Patricia on 07/20/11 at 10:46:51

Thats great that you are having good results!

I wish my husbands GI issues where better than they are, his stomach is the first to go...he steps outside in this extreme heat and a few minutes later he gets gassy and crampy.

Can you tell me about your tendon pain? My husband suffers from terrible inflamed tendons. He has tendinitis of the right elbow that's been bothering him for over 2 yrs, his left elbow is now starting to hurt. The orthopedic we saw last week said his rotator cuff had inflammation and in his hips. He said we could get surgery and scope out the elbow but then what are supposed to clip all his other tendons? Anyway he ordered an MRI and we get results tomorrow. His bone density scan showed ostepoenia. He started a 9 day course of prednisone (30mg,20mg,10mg for 3 days each) it's his second day on them and he's thirsty, has an even harder time sleeping and a bit of a head ache today. I'm hoping he'll get a little releif from all his inflammatory pain issues.

He has been taking ibuprofen and aspirin because of elevated prostoglandins but it doesn't help to much with pain and I'm worried about the damaging effects it might have on his stomach.

Title: Re: Which one first: Ketotifen or Singular
Post by Susan on 07/20/11 at 18:58:38

Patricia,

I have chronic Lyme disease (about six weeks ago they did a culture and are still finding viable bacteria after six years.) My most persistent symptom has been pain. However, the pain has usually been in my muscles, with more occasional joint pain. I do have a tendency to more easily injure my joints than other people.

The last couple of years I have had increasing inflammation, and since last winter more allergic issues, and more joint issues. I had Baker's cysts behind both knees, and sometimes could barely walk. I would also get swelling and pain in my hands and feet. Most recently, I woke up with trigger finger in four fingers, including both thumbs, and was in terrible pain in all of my tendons and joints for several months.

I take morphine sulfate for the general pain, but it wasn't helping at my regular dose. I was having trouble walking, using my hands, or doing much of anything. I am surprised how much improvement I have had since starting the ketotifen. I can't say absolutely that it caused the improvement, but it sure is a coincidence if it isn't the cause. I can still feel one thumb joint pop if I put too much pressure on it, but other than that, I am doing pretty good.

My GI stuff is still not completely OK, but I just had the endoscopy less than a week ago, so I will give it more time.

I will say, I have a bias against prednisone. Because I have a chronic infection, I have to be very careful not to take predisone, as it will set the infection on fire. So every time someone here talks about taking it, it scares me. I know it is essential in certain things, but it has so many issues, like the osteoporosis, thinning of tissue, and weakness. I hope your husband gets some relief!

Can he tolerate antibiotics? Usually I keep my tendon issues under control with minocycline, but I have been off of it during this GI testing, and everything got worse then. Minocycline has been proven to help with cartilage damage, and is used in both osteo and rheumatoid arthritis. It is a double help for me, with the infections, but I know not everyone with masto problems can tolerate antibiotics.

Title: Re: Which one first: Ketotifen or Singular
Post by Patricia on 07/21/11 at 05:25:42

Wow thats a long time, I'm so sorry.

We just saw the orthopedic and got the MRI results which showed torn tendon in rt elbow, mild tear in rotator cuff, inflammation but no damage to the joints and nothing really bad. He does have ostepoenia and some thinning of the bones.

I too am scared to death of steroids and have tried to avoid them for the past year but it just seems like his inflammatory issues are becoming more and more. So we are trying a 9 day course, he is really sensitive and has had dry mouth, headache, insomnia. He's also been feeling like his pills get stuck in his throat and this week end was having trouble swallowing food. He still has to have that endocsocy/colonoscopy done where they biopsy the whole thing and well praboby do it at the end of the summer. Hes feeling pretty good today and we are just trying to avoid the heat!

Alarm bells went off in my head about the infection n steroid combo and I'll be extra careful to monitor him.

I mentioned the idea to orthopedic about low dose antibiotic to possibly clean up any bacteria in the event that he is developing RA...guess he hasn't heard that theory but I have. He recommended we see a good rheumotologist and I probably should but I think I'm going to try and get in to see Dr Jemsek first.

Thanks again for your insight!
Patricia

Title: Re: Which one first: Ketotifen or Singular
Post by Susan on 07/22/11 at 11:33:51

Patricia, I hope you find something that will work. I know cortisone is needed sometimes, even when you have something that doesn't work well with it. You just have to do the best you can.

With his swallowing problems, it would be good to get the endoscopy. They found I may have eosinophilic esophagitis, which can cause restriction in the esophagus, trouble swallowing and breathing. It appears it may show up often with mast cell issues.

I posted some links in the post Lucas put up under general on trouble swallowing.

Do you ever feel like your family only gets the most unusual things wrong? I sure do!

Title: Re: Which one first: Ketotifen or Singular
Post by Patricia on 07/23/11 at 01:18:42

OMG yes! I've never heaven heard of these types of things!

When I read your posts on EE it sounded very similar to what my husband has started to notice. Then on sat when he had a bad episode and really felt pressure in his throat chest area I definilty want to monitor this and will push for and endoscopy.

My husband had allergies, heartburn, hypothyroid, hpilori infection 10 yrs ago, loose stools and used to sweat like a woman in menopause that was always blamed on his thyroid. I never thought it could equal rare non functioning, life threatening, severe, idiopathic, systemic disorder that no one knows how to treat. It's taken me a year to get over the shock of it all!

He is feelipre better today but it's 108 degrees out today, it's like forces are working against us!!! It's a constant battle!
Thanks again!!!

Title: Re: Which one first: Ketotifen or Singular
Post by Riverwn on 07/23/11 at 09:57:00

Hi Patricia!
I think Susans hit the nail on the head and was thinking the same thing--EE. Is your hubby on Singulair yet?? That just might help with this.. he should take it in the AM and if it helps, he can increase the dose up to 30 mg a day (from what some other people are taking).

Be careful about him taking prednisone and Ibu and Aspirin at the same time--very bad for the tummy--hold off on the Ibu and Aspirin while he takes the Prednisone, he can restart it after hes done with the cortisone. Let us know how he is doing and remember, Dr Castells is now advising meds every 6 hours while awake to prevent reactions coming through.. Hope he is better soon!!
Hugs
Ramona

Title: Re: Which one first: Ketotifen or Singular
Post by Patricia on 07/23/11 at 10:52:33

Hey! Yes he takes 10mg in the am and notice a huge difference if he's not taking it. I'll ask Dr Castells about adding 10mg in the evening.

He's feeling pretty good and the steroids have helped except "side effects" is his middle name and I think gained 8lbs in 4 days, feels good but seems on the bloated side. We are tapering off now so hopefully he'll adjust. Is there anything i should be looking out for when he stops taking them?
Its such a bummer to feel kind of good and then it's like an inferno outside, we are taking it easy and are grateful that our AC is working!!!

Title: Re: Which one first: Ketotifen or Singular
Post by Riverwn on 07/23/11 at 11:24:07

Hi Patricia!
You already see the side effects of prednisone--you feel wonderful at first but in the long run, he would get used to it and it wouldnt feel as great. The other side effects are, getting emotional easily, eating EVERYTHING in sight and yes gaining weight (which he will lose again when he is off of it).... As long as he tapers off slowly he should be fine. I took my last dose today of prednisone and I sure enjoyed the week of meals I could eat and keep down LOL.. back to my regular rejecting protein, small slow meals, little fruit or veggies... and I eat so much Italian Ice I could become one !
Im glad he is staying in cold AC, its a must right now :)
hugs
Ramona

Title: Re: Which one first: Ketotifen or Singular
Post by Riverwn on 07/23/11 at 11:25:47

PS, if he has any trouble coming off of it and starts reacting again, too quickly, you might think about a 3rd dose of allegra in the middle of the day.. Talk to his DR about this and good luck!!
hugs
Ramona