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Which one first: Ketotifen or Singular (Read 21931 times)
Susan
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Re: Which one first: Ketotifen or Singular
Reply #15 - 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.
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Susan

Chronic Fatigue Syndrome/ Chronic neurological infections
Diagnosed with Mastocytosis August 2011
 
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Patricia
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Re: Which one first: Ketotifen or Singular
Reply #16 - 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.
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Patricia
 
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Susan
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Re: Which one first: Ketotifen or Singular
Reply #17 - 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.
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Susan

Chronic Fatigue Syndrome/ Chronic neurological infections
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Patricia
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Re: Which one first: Ketotifen or Singular
Reply #18 - 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
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Patricia
 
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Susan
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Re: Which one first: Ketotifen or Singular
Reply #19 - 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!
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Susan

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Patricia
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Re: Which one first: Ketotifen or Singular
Reply #20 - 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!!!
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Patricia
 
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Riverwn
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Re: Which one first: Ketotifen or Singular
Reply #21 - 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!!
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Ramona
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Patricia
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Re: Which one first: Ketotifen or Singular
Reply #22 - 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!!!
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Patricia
 
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Riverwn
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Re: Which one first: Ketotifen or Singular
Reply #23 - 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 Smiley
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Ramona
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Riverwn
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Re: Which one first: Ketotifen or Singular
Reply #24 - 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!!
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Ramona
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