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    • CommentAuthorlindyd
    • CommentTimeJan 7th 2010 edited
    I mentioned on another thread that I had asked my doctor about Ketotifen and she had not heard of it but would look into it.
    When I got home I searched the forum and Teefee who used to post on here had named the Uk version as Zaditen. So I wrote the doctor a note and gave her the info and there was a message on my voicemail today saying she has left me a prescription for it at the Doctors reception.
    I do SO love my new doctor.. she is willing to work with me and is not "threatened" by the fact that her knowledge of sals/sulphites is sketchy and does not try to cover it up by ridicule as so manay doctors seem to do..
    Anyway I am going to give the drug a trial.. Teefee (Teresa) did well on it.. she hasn't been around for some time so I don't know how she is doing now..
    I will leave starting it until I come back from Egypt as I understand it can make you very tired and dopey when you first start taking it.. but this wears off.. and I don't want to be tired and dopey on holiday :o)
    I will post here when I start it and let you know what happens.
    Here is some info:
    Mechanism Of Action: Ketotifen is a relatively selective, non-competitive histamine antagonist (H1-receptor) and mast cell stabilizer. Ketotifen inhibits the release of mediators from mast cells involved in hypersensitivity reactions. Decreased chemotaxis and activation of eosinophils has also been demonstrated. Ketotifen also inhibits cAMP phosphodiesterase. Properties of ketotifen which may contribute to its antiallergic activity and its ability to affect the underlying pathology of asthma include inhibition of the development of airway hyper-reactivity associated with activation of platelets by PAF (Platelet Activating Factor), inhibition of PAF-induced accumulation of eosinophils and platelets in the airways, suppression of the priming of eosinophils by human recombinant cytokines and antagonism of bronchoconstriction due to leukotrienes. Ketotifen inhibits of the release of allergic mediators such as histamine, leukotrienes C4 and D4(SRS-A) and PAF.
    • CommentAuthorsylviaann
    • CommentTimeJan 7th 2010
    PLease let me know how you respond to this medication Lindy. I would love to discuss with my allergist next month when he patch tests me for preservatives (if you see an improvement in symptoms).

    Have a wonderful, safe holiday!
    • CommentAuthorlindyd
    • CommentTimeJan 30th 2010
    Well the big day has come..
    I have taken my first dose of ketotifen (zaditen) this morning... well I took half a one.. I am a bit of a "chicken" when i first take new drugs ;o)
    I am having to stop the cetirizine to take the new drug which concens me slightly (ketotifen enhances the action of other antihistamines so you are advised not to take both at once).
    If I am still alive at lunchtime I will take the 2nd half. I'm supposed to take 2 a day but will start with one to see if there are any side effects. When Teresa (teefee) started them she found she was very sleepy at first.
    Love Lindy xx
    • CommentAuthorsylviaann
    • CommentTimeJan 30th 2010
    I'm crossing my fingers for you Lindy!! Keep us posted.

    Sylvia :)
    • CommentAuthorlindyd
    • CommentTimeJan 31st 2010
    2nd day report
    Have now taken first 3 tablets - no adverse reaction at present. Decided to go for the 2 a day as prescribed as no bad reaction to the first one.
    Nasal congestion still the same. Skin still reacts badly if I run my finger nail gently gently along it (dermographia) Will wait a while before I try out any foods- it's early days yet.
    Lindy xx
    • CommentAuthorlindyd
    • CommentTimeFeb 3rd 2010 edited
    Well nothing much to update..
    I have now taken 4 days worth of tablets (2 tablets per day)
    No side effects at present..
    my "usual" over sensitive skin reactions still the same..
    Nasal congestion.. no improvement .. but probably not a fair trial for nasal congestion at the moment as I have a virus.. I am coughing and my glands are up (it is going around here.. most of my little Brownie Guide girls were also coughing last night..)
    I am going to buy some golden delicious apples and pears tonight when i go supermarket shopping. I had previously been reacting to them with itching so will re try them
    Lindy xx
    • CommentAuthorlindyd
    • CommentTimeFeb 4th 2010
    I survived a half a golden delicious apple last night without any inflamed skin /itching :o) amazing for me as I have been getting bad itchy reactions from them previously.
    I am going to try 2 carrots this evening - more than half a carrot normally makes me itch badly..
    Lindy xx
    • CommentAuthorLimag
    • CommentTimeFeb 4th 2010
    Hi Lindy,
    I hope you survive well your trials. I would be more carefull about increasing food intake so often and by so much though.
    Ketotifen, I think Teresa mentioned, may take a bit to kick in. so, be careful.
    I am happy though that you are feeling positive about this drug.
    Good luck
    • CommentAuthorlindyd
    • CommentTimeFeb 4th 2010
    Thanks Glaucia :o)
    My sals reactions seem mainly to be uncomfortable rather than dangerous.. red, itchy skin & GI symptoms - stomach cramps, upset stomach...I'm so used to trailing things and getting reactions I don't worry too much now..I just get on with it...The carrots will just make me very itchy if they have an effect...
    Its the sulphite reactions that scare me.....I react much more violently to sulphites..
    Hugs Lindy xx
    • CommentAuthorlindyd
    • CommentTimeFeb 4th 2010
    Well I decided on one large cooked carrot in the end.. I normally react to more than half..
    It was fine... no reaction :o)
    Will try 2 carrots next time in a few days..
    Lindy xx
    • CommentAuthorLimag
    • CommentTimeFeb 5th 2010
    Yay, Lindy!
    I'm cherring for you form here.
    God bless and hopefully you will do well through this.
    • CommentAuthorlindyd
    • CommentTimeFeb 8th 2010 edited
    Thought I had better report in in case anyone is wondering how I am doing :o)
    This is turning into not a "fair trial". I am still fighting this virus that is going around here with swollen tender glands, very blocked nose, although the cough is finally is really beginning to annoy me now.. I feel well enough now not so sit feeling sorry for myself as I was so the symptoms are just getting really annoying..
    However they mean that I really can't judge how I am doing on the ketotifen properly.
    Yesterday I had (fruit & veg wise) : 1 ripe banana, frozen peas, a little cooked celery, 1 peeled cooked carrot.
    For me this is a lot.. I normally only manage a few peas...
    This morning I have only some itchy skin sensitivity on my legs but this could just be due to being unwell so am not going to assume anything.
    I will just continue to take the ketotifen for now and wait until I have beaten this virus before I start to try increasing my sal foods. I have some raspberries in the freezer waiting :o)
    Lindy xx
    • CommentAuthorlindyd
    • CommentTimeFeb 10th 2010
    Re-tried a few green beans.... and got my usual reaction....lots of uncomfortable gas and swollen hands (fluid retention).
    My reaction to beans (and wheat) are very different to my reactions to sals so obviously I am reacting by a different mechanism which is not covered by the ketotifen.
    I need to find out what the connection is between beans and wheat ...if any...both cause me fluid retention..sals don't.
    I am continuing to eat golden delicious apples and a few carrots without any sals reactions.
    STILL fighting the virus.. although it is DEFINITELY improving albeit slowly. When I am better I can add some more sals foods..
    Lindy xx
    • CommentAuthorlindyd
    • CommentTimeFeb 15th 2010 edited
    Thought I had better update this thread :o)
    16 days into trial.
    The one thing I have noticed is that my muscle stiffness/achiness has totally disappeared!
    My knees (although the doctor diagnosed early arthritis from xray - I was convinced it was muscle pain) are now fine.. I actually for the first time for as long as I can remember stepped straight up onto the sofa to dust the shelves - I could not raise my knees this far before - I had to kneel first and push myself up with effort.
    I am assuming this is the medication as I can't think of any reason why this should improve, especially as I am eating a slightly higher level of sals..
    I am STILL unfortunatly trying to shake off the remains of this virus (4 weeks now) it is definintely cough is slight now but I am still very congested.. I think I probably had a chest infection which took a while to clear.
    The severe continued nasal congestion is a concern and part of me is wondering if it is anything to do with the ketotifen...(and stopping the cetirizine). But I don't want to stop the tablets at this stage.. because if the nasal congestion does then drastically improve I would not know if it would have improved anyway naturally or if stopping the tablets made it improve!
    I am still managing to eat some carrots and apple every few days with no ill effects which is a great improvement for me(no affect on nasal congestion the days I don't eat them) ...but while I am still not 100% I am not keen to up my intake of sals yet..
    So regretably this is still not a fair trial.
    I have an update appt with my doctor tomorrow.. I guess I will get another prescription to see how they go.
    I will stay on them for a while longer and if the nasal congestion does not ease I will change back onto the cetirzine and see what happens and then go back on the ketotifen..
    Lindy xx
    • CommentAuthorFabi
    • CommentTimeFeb 15th 2010
    Hi Lindy,
    wheat and beans contain short-chain proteins, peptides. Peptides can mimic neurotranmiters and mess with almost any hormon response, or other chemical process within the body, if you are sensitive to them. For example, and it is my experience too, they can mess with vasopressin, the hormon in control of water within cells or in the intercell tisue. Maybe this time you just isolated the reaction from the one on sals...
    Hm. Reading your posts I am begining to think of retrying Ketitofen, I still have some left. I will write on the effects if I decide to give it a try.
    • CommentAuthorlindyd
    • CommentTimeFeb 23rd 2010 edited
    Am now well settled on the ketotifen after 3 and a half weeks and am getting no side effects..even though the information sheet gives a scary long list of them!
    As I have mentioned above I have had a virus with an awful cough, swollen glands and nasal congestion etc.
    This is now almost better (not totally).
    I saw the doctor and she agreed it has not been a fair trial and has given me another months prescription and have to go back next month to report back again. (She did also say that the length of time I have had the effects of this virus is normal..they have had a lot of people with it and it goes on forever)
    Conclusions so far:
    I am now being able to eat a large carrot and a golden delicious apple in a day without reaction (this is really good for me as I was reacting to small amounts of either of them a while back.)
    Now I am am feeling better I will try to push the limits and try a few other moderate sals things in the next couple of weeks.
    My muscle issues are much better. My knees are no longer stiff and I can move better. It is interesting that I forgot to take my tablet yesterday morning (I had not realised I had forgotten it) and was out all morning on my cycle.(I cycle a lot) I noticed my knees were stiffening and cramping again. When I got home I realised that I had forgotten my morning tablet and took it. By the evening the stiffness and crampiness had gone again.... interesting.
    Everything is smelling much less strong again. smells are not annoying me anywhere near so much. (Previously I could smell fabric conditioner on someones clothes half way down the road). Whether this an effect of the tablets or whether it is anything to do with the extra nasal congestion from the virus has yet to be be decided ( some nasal congestion is a normal thing for me anyway).
    So far I feel quite positive about this drug. I will report back later.
    Lindy xx
    • CommentAuthorcjeanbrown
    • CommentTimeFeb 23rd 2010
    Thats great Lindy,I know this a breakthrough for you and your diet has been very limited,I am happy for you and hope it keeps getting better.What kind of drug is that?anti-histamine? Jean
    • CommentAuthorcjeanbrown
    • CommentTimeFeb 23rd 2010
    I went back and read your info about what kind of drug,interesting,wondering if it might help my asthma,I quit the singulair,didn't seem to help as much as it had before,I might try it again,Jb
    • CommentAuthorlindyd
    • CommentTimeFeb 23rd 2010
    Hi Jean
    As you have read it is an antihistamine and mast cell stabiliser.
    Ketotifen can be used for asthma prevention so could be worth talking to your doctor about it if you are not totally happy about the medication you are using at the moment.
    It works at the "stage before" montelukast (singulair) ie it actually helps to stop the mast cells degranulating and releasing the histamine and leukotrines rather than just dealing with them when they are released.
    It's warned that you may feel more sleepy/drowsy on it (the newer antihistamines don't do this) but I haven't noticed any problem.. I am sleeping quicker and a lot more deeply at night though.. but that can only be a good thing :o)
    Lindy xx
    • CommentAuthorcjeanbrown
    • CommentTimeFeb 24th 2010
    thanks for explaining,I will ask my Dr about it..I get alot of raised eyebrows from him,but he doesn;t dispute me much because I am able to be pretty well informed thanks to all of this information,he looked confused last week and asked me why he checked my thyroid and I said because I asked you to ( whether he is just humoring me or whatever,at least he does what I ask) there are some benefits of getting older,I get more respect it seems,Jean
    • CommentAuthorTeefee61
    • CommentTimeFeb 27th 2010
    Hi Lindy,

    I haven't been around for a while because I haven't had any type of allergy symptom for ages. I eat chocolate, drink wine, eat fruit and vedg, cheese, etc... Need I say more? However, it did take me a while to get to this level. I started taking the Ketotifen about 15 months ago, cautiously at first (one a day), working up to the full dose. I was still on a low sal diet, except for morning coffee, and was sensitive for a while. I accidently took a throat lozenge with an ibuprofen like substance at Easter last year, and puffed up like a ball. I think my cells got rid of any extra histamine, because since then, I haven't had any more symptoms, despiting overdoing the chocolate!
    Like you, my muscle aches and pains were the first to disappear, followed by all the other wierd symptoms (sleepiness, hives, migraines). But I only nuilt up to normal foods quite slowly.

    Good luck, I'll check in every now and then to see how you are!

    Teefee xxxxx
    • CommentAuthorlindyd
    • CommentTimeFeb 27th 2010
    Hi Teresa !!
    Good to hear from you again and that you are well :O)
    If you are still around long enough to read this..what dose of the ketotifen do you take? I am on 1mg twice a day.
    I'm being really cautious on the foods at the moment.. my doctor is really worried I am going to send myself into a bad reaction...I'm planning to build up slowly.. but it's good to be able to eat a few carrots and golden delicious apples again. Sweet potatoes mixed with the carrot are next on my list to try..

    Love Lindy xx
    • CommentAuthorTeefee61
    • CommentTimeMar 2nd 2010
    Hi Lindy,

    Yes 1mg twice a day. I'm glad you are able to eat more, at last! How are your symtoms?

    I was extremely cautious for several months (except for the coffee), but now I am really stable. I eat nearly everything but try to avoid high sal items and I wouldn't dare touch any sal meds. But I can drink a couple of glasses of wine, eat pizza and chocolate, fruit and vedg. The only thing that happens now if I overdo it is that I get a little eczema.

    Love Teresa X
    • CommentAuthorlindyd
    • CommentTimeApr 8th 2010
    I have been on the ketotifen (zaditen) for over 2 months now and have asked for it to be put onto repeat prescription as I intend to continue taking it.
    I have had no side effects at all - no sleepiness etc or any of the scary side effects they always list!
    It is not a miracle cure.. BUT it is helping..
    I am definitely able to eat more - my tolerance level has increased a little and I actually feel a lot better - less emotional, less tired, less itchy, in fact practically normal!
    I am now able to eat 2 carrots and a golden delicious apple in the same day (for me that is a LOT) and I ate a whole bowl of potato wedges with skins on in an organic cafe the other day :o)
    Today I had carrot with my dinner followed by a few frozen raspberries..
    I did get a mild build up reaction yesterday.. I started to get the beginnings of the horrible off balance vertigo feeling I get along with the itchiness but I ate a sal free dinner and took my tablet and by the evening I was fine again..
    So if anyone is considering giving ketotifen a go I would say it is worth a try....
    Love Lindy xxx
    Good for you,Lindy you needed some relief,Love,Jean
    • CommentAuthorkelza
    • CommentTimeApr 8th 2010
    How wonderful Lindy, its about time you had a break through :) so happy for you xx
    • CommentAuthorlindyd
    • CommentTimeApr 18th 2010
    Forgot to take my tablet yesterday morning.. I was away from home and in a rush to get out as selling at the Car Boot Sale.
    Result...unbearably itchy all over with red splodgy skin by early evening. I took the normal one in the evening but I am still itching this morning.. that will teach me to forget :o)
    Lindy xx
    • CommentAuthorcjeanbrown
    • CommentTimeApr 19th 2010
    but it does give you that confirmation that it is helping you so much,Jean
    • CommentAuthorkelza
    • CommentTimeApr 19th 2010 edited
    My doctor wants me to trial Ketotifen as well, for 3 months. She said that my immune system needs a break and this is the way we are going to do it :) its comforting to know that you are getting good results Lindy.

    Unfortunately Ketotifen isn't available in Australia ("the reasons are bureaucratic" apparently) so i have to wait 10 days for my prescription to arrive from New Zealand.

    I will let you know how i go with it xo
    • CommentAuthorlindyd
    • CommentTimeApr 19th 2010
    I will be interested to hear how you get on with the ketotifen Kelza... good to have someone else on the "trial" :o)
    Another interesting thing is that I used my usual hair colour on Friday (I use Naturetint) and normally I can only bear it on my head for about 10 to 15 minutes before I have to wash it of as it makes my scalp sting badly... This time I managed to leave it on for the full 30 minutes with no stinging at all hair is a much nicer colour :o)

    Lindy xx
    • CommentAuthorkelza
    • CommentTimeApr 21st 2010
    I have been looking at my hair lately wondering if im going to go through colouring it again.. its starting to look a bit shabby lol, its going to be a long 10 day wait for the prescription to arrive. I took the name in to the doctor with me after reading about your success with it so i was super pleased when she said that was the one she wanted me to trial!!

    She suggested 1 tablet a night for the first week then bumping it up to 2 a day. I am a little concerned about the sleepy side affect as im already feeling zombie like but i guess it can only help me sleep through the night properly :)
    • CommentAuthorlindyd
    • CommentTimeApr 21st 2010
    I have had no sleepy side effects at all and I went straight onto the 2 tablets a day :o) I didn't get any of the possible side effects listed so you will probably be fine! The doctor did mention that the full dose is 4 tablets a day and that if the 2 a day stop being effective in the future then I can go up to the higher dose.
    Love Lindy xx
    • CommentAuthoralexasap
    • CommentTimeApr 24th 2010
    Hello Lindy,
    This is a fab thread.
    My 2 year old son has been to a specialist in the UK who has prescribed the Montelukast.
    The specialist in childrens allergies said in a letter he can not do anything further to help.
    I have read your trials and I think that the Montelukast may not be the first thing to try.
    I think that the Ketotifen from what you and Teefee have written may be the best.
    I have just read Ketotifen is able to be taken by children age 2 and over so I am really going to look at this.
    The Montelukast is arriving next week but I think it may stay on the shelf and we will book an appointment to get the Ketotifen.
    My son is only 2 and it is very hard to know what to do for the best, he can not tell us what is happening in any detail.
    The depth of information in these trials is invaluable, thank you, and Teefee.
    • CommentAuthorlindyd
    • CommentTimeApr 25th 2010
    Hi Steve
    My Allergist in the UK had told me that they only prescribed Montelkast.. it was only that I found a GP who was willing to prescribe the ketotifen - she had never heard of it herself! You may get blank looks when you talk to your doctor about it. The packet name is Zaditen.
    Let us know how you get on.
    Lindy xx
    • CommentAuthorkelza
    • CommentTimeApr 26th 2010
    Hi Lindy
    I am still waiting, waiting, waiting :) what are you having in the way of salicylates etc now? have you increased what you are having?
    • CommentAuthorRita
    • CommentTimeApr 26th 2010
    Hi Lindy, isn't Ketotifen a steriod? Are you really comfortable taking it if it is? When I had one of my first bleeding episodes, and they could not figure out why, they treated me with steroids, and the bleeding stopped, but I always credited to starting up my vitamins.
    • CommentAuthorlindyd
    • CommentTimeApr 27th 2010
    Hi Rita
    No Ketotifen isn't a steriod. It is an H1 antihistamine/ mast cell stabiliser and phosphodiesterase inhibitor.
    It works by helping to prevent the leukotrines/histamine being released from the mast cells/stops the mast cells degranulating.
    Hi Kelza
    Yes I have been able to increase my salicylate intake a little..I can now eat a small amount of some foods from the moderate list - at one point even a golden delicious apple was making me react so it is quite an improvement for me :o)
    Love Lindy xx
    • CommentAuthorTeefee61
    • CommentTimeApr 29th 2010
    Just popped in to say hello! I've been on zaditen for 18 months now. It doesn't stop all reactions, but it means we can eat things that build our immune system up (omega 3s, vitamins). On the other hand, I think I've been overdoing something, because my leg cramps are back, and I've got a couple of red patches.

    Reactions improve with time, and we can relax a bit more, but sometimes I overdo it a bit (especially on the chocolate!) I don't look at all labels for everything, but I still avoid high sal items like curries and dried fruit. I'm now OK with histamine foods such as cheese and yoghurts.

    It seems that zaditen (ketotifen) is used by immunologists in Portugal, but not in the UK. My cousin also has sal intolerance, and her (UK) doctor had never heard of it.

    Good luck everybody!

    Teefee xxxxxxx
    • CommentAuthorlindyd
    • CommentTimeApr 29th 2010
    Lovely to hear from you!
    Good to hear you are still doing well. Interesting you should mention leg cramps.. I have been getting them the last few nights..
    I'vd dropped the oats I have been eating as since I have been eating them I have been getting my carpal tunnel sydrome symptoms again (dead hands) and wondered if they were the culprit - I also realised my salt intake is very very low as I eat no processed foods so have upped it a bit.
    As you say the ketotifen doesn't stop all reactions but definitely seems to be helping..
    Love Lindy xxx
    • CommentAuthorkelza
    • CommentTimeApr 29th 2010
    Thanks for popping in to give us an update Teefee!

    Linda & Teefee how do you go with energy levels on ketotifen? one of my biggest problems with sals is chronic fatigue and im hoping it will help, once my system is used to it. I will be taking it at night
    • CommentAuthorTeefee61
    • CommentTimeApr 30th 2010
    Hi Kelza,
    Apart from hives/ oedema, one of my biggest problems was muscle weakness/tiredness, and also the tendency to drop off to sleep while driving. These disappeared with ketotifen (but not immediately).
    But there can be side effects, which I haven't got. My cousin got very sleepy, and had to stop taking it.

    Good luck!

    • CommentAuthorlindyd
    • CommentTimeMay 3rd 2010
    The warnings on the packet state that as it an H1 antihistamine it can cause drowsiness.
    I have had no problems with drowsiness fatique with the drug.
    The only thing you can do Kelza is give it a go..things affect different people in different ways..
    Lindy xx
    • CommentAuthoralexasap
    • CommentTimeMay 9th 2010
    Hi Lindyd,
    Well I got the Zaditen from the Doctor after a seriously conversation with a Doctor, did not go well but I got it anyway.
    The doctor was more worried about being struck off.
    Tried my son with it, 1/4 tablet first day,
    1/2 tablet second day,
    then 2 X 1/2 third day,
    then 4th day 1 tablet and 1/2 latter.
    My son showed some improvement not reacting to general build up type enviromental factors although he did have a reaction to pine trees we think.
    However, then he came out in an awful cold which carried on getting worst and turned into a very, very bad cough and wheezing.
    We have been to hospital twice with this type of breathing problem and we now have a Dexamethasone tablet at home which is a steroid which stops his breathing problem in seconds.
    We gave him this and took him to the Doctors.
    The Doctor read his notes and realised how ridiculous it is that we are not getting assistance with his condition and has booked us an urgent appointment with a paediatrician.
    I think the Doctor had a bit of a shock when he realised my son needed antibiotics and he could not prescribe them as he did not know what they contained and if my son would react to it.
    We stopped the Zaditen and gave him piriten (chlorpheniramine).
    He had a second dose of Dexamethasone tablets, so 2 doses in 2 days.
    His breathing improved and his cough stopped over the following day.
    Then, his hands which were very cracked stared to heal and over the next 2 day they completely cleared and the rest of his skin improved considerably.
    No red cheeks no red eyelids, any puffy eyes /puffy hands, not itching/scratching.
    We thought back and the last 2 times he has had Dexamethasone tablets his skin improves drastically.
    Researching the Dexamethasone it turns out it lasts in activity for 3-4 days.
    On the 4th day after taking it my sons cheeks are going red. His itching is back and is feet and hands are not improving anymore but getting worst.

    Lindyd, do you consider the Zaditen could be lowering your immune response in anyway; we are a bit shaky about giving it to my son again.
    His chest infection and was quite bad and the rest of use have had it but now where near as bad.
    Has anyone any experience with Dexamethasone or other Glucocorticoids steriods.

    I have said before that I think that the symptoms of my sons condition point to an over active immune system.
    He never gets an infection in any cut on his skin. The hives appear on joints and in other areas which you body defends.
    The Dexamethasone or other Glucocorticoids steriods are immune system suppressants.
    My son has Betnovate cream which is the only cream which improves the hives ect... This is also a Glucocorticoids steriod (bethamethasone).
    We struggle to get this off the Doctor as they are concerned about it thinning his skin.
    We are also finding that the cream Betnovate cream not only improves the hives but also stops the itching in areas which are flaring up.

    I have searched the forum and can find anything about Dexamethasone only bit about steriods such as Prednisone for breathing difficulties.

    I am going to see the Doctor this week and I think that the Dexamethasone is a subject to talk about.

    I have my Mother on the case and she thinks an oral daily low dose is possible of Dexamethasone (but not currently available).
    Many people take low dose Steriods for Asthma mainly, Beclometasone.

    Let me know what you think.

    • CommentAuthorkelza
    • CommentTimeMay 9th 2010
    I finally have my Ketotifen, after 3 long weeks of waiting! Now is just have to wait the 6 long hours until i can take one

    Sorry to hear about your son Steve, I hope you find some answers soon xo
    • CommentAuthorlindyd
    • CommentTimeMay 9th 2010 edited
    So sorry to hear your son has had such problems.. poor little soul..
    It's a shame that him catching the virus co-incided with him starting the ketotifen as you will now not know whether it was just unlucky that he had a "normal" bad bout of it or whether the ketotifen contributed to his slow recovery. Young children do tend to react more violently to new viruses as their immune sytems are so immature and they have not encountered many viruses in their short lives.
    I think the virus you have all had has been around here earlier in the is a particularly bad one that goes right down on the chest - I had it in January and it took about 6 weeks to completely clear. I coughed for weeks. It did cross my mind whether the ketotifen was contributing to my slow recovery but my doctor reassured me that they had lots of people coming into the surgery with the same virus which was also lasting weeks and who were having to have repeated prescriptions of antibiotics.
    I agree about the "over active immune system" theory and I think that taking steriods would help a lot of us! However, they scare me as they also damp down the bodies ability to fight infections ..Having said that my dh takes a low dose of prednisolene every day for RA and seems OK.
    I feel for you as when it is your child it is difficult to know what to do for the best.
    It is good that you doctor is now interested and involved....discussing the best options with him is the way ahead..
    Love Lindy xx
    Brilliant.. let us know how you get on :o)
    Love Lindy xx
    • CommentAuthorFabi
    • CommentTimeMay 10th 2010
    Hi Steve,
    sorry your son is going through all this...

    I have quite some experience with steroids, good and bad ones. For me it is a life saver, but I also know the downsides, sice I was given too much at age 13 and I ended up with Cushing's disease, which is no other than the result of overdosed steroids. I have learnt not to be too afraid of steroids supressing the immune system. My practitioner says, my immune system is overactive anyway and steroids take a bit of pressure from the adrenals trying to combat all this continuous imflammation ocurring all over the body. They also suppress the production of inflammatory mediators (prostaglandine, Leokotriene, tromboxane), leading to potentially milder rections. It is not the panacea, but it can be very helpful if used carefully and responsivelly together with a doctor.

    Some general information on steroids:

    The most important thing if considering steroids is either using it as emergency medication (high dosis on the first day, than slowly reducing, practitioners decide about the reduction protocol, depending on how high was the first dose) or sticking to doses within the normal daily production of ones body. The average production is normally about 20-40mg Hydrcortisone per day, most of it between 6 and 8 in the mornig (in adults, I do not know what is children's production, that's something for the doctors), but if the body is in stress it goes up to 200-300mg/day. The dosage recommended is the minimal dosis stopping symptoms. Ideally it should be less then 40mg Hydrocortisone or equivalent (10mg Prednisonlon/1.200mg Dexamethason). Still, if necessary doses doble so high, 20mg Predisolon do not suppresse the HPA axis, that means that the body's abbility of producing HC if needed is not copromised. That is of the utmost importance in order to prevent the body of getting damage from steroid medication. I repeat, those values are for adults, just want to explain some facts.

    Dexamethasone is considered to have relatively few side effects and is prescribed especially for people who do not tolerate prednisone and acts longer. Dexamethason is 30 times weaker than Hydrocortisone. Equivalence is 1mgHC/30mgDexamethasone.

    Hope that helps a bit.

    All the best for your son!
    • CommentAuthorFabi
    • CommentTimeMay 10th 2010
    eh, I meant :
    Still, if necessary single morning dosis doble so high, 20mg Predisolon do not suppresse the HPA axis
    • CommentAuthorkelza
    • CommentTimeMay 16th 2010
    I have taken one capsule a day (1mg) for a week now, which is half a dose, and believe that i have noticed benefits. there have been so many variables that have made it hard to tell for sure though... I started taking them on the tail end of a virus, on the change of seasons.. its now our dry season (hayfever/asthma season) and i have to confess i had gone pretty much off the rails with my low sals, diary & wheat free diet!

    First the things that have definitely changed. My breathing improved heaps... it doesnt seem like an effort anymore. I no longer have dry itchy eyes. my sinitus has improved a lot and so has my tight/sore throat and tender glands. Also my fatigue levels have changed.. and i find this hard to explain even to myself.. I still feel tired but in a different way I guess, I'm finding it easier to get up in the morning.. no more moving from the bed to the couch to the bed lol but I still feel that I could happily sleep for hours on end. My muscle ticks/pops in my thighs and crawling skin feeling has been absent. And I believe that I am regaining my strength.. while all these things do sound (and are) pretty amazing they are pretty small overall improvements.. i am feeling better though and not complaining :)

    On the other hand I do feel a bit "spacey" which might be due to the fact that Im taking antihistamines and just need to adapt to them? I have noticed that my anxiety symptoms have returned a bit.. without any related panic-y feelings though. I have had woken each morning to dark puffy bags under my eyes and my upper eyelids are swollen as if Ive had a marathon crying effort. And the rims (for lack of a better word) of my lower eyelids are very red

    I did manage a mini workout yesterday which I have only dreamtabout for the last 6 months so something must be happening :) just waiting to see how my muscle recovery goes over the next couple of days

    I start taking a second capsule in the morning tomorrow, I think after a week on full dose I will have a far better idea of how much improvement I will have from them
    • CommentAuthorlindyd
    • CommentTimeMay 16th 2010
    Hi kelza
    Good to hear you a feeling some benefits..yes the spacy feeling (and the tiredness)I guess is probably the fact that you are adapting to taking antihistamines. I had been taking ceterizine for over 20 years before changing to the ketotifen so my body had already adapapted!!
    Interesting that your ketotifen is capsules.. mine is tiny white tablets..
    Keep us informed..
    Love Lindy xx
    • CommentAuthorkelza
    • CommentTimeMay 16th 2010
    I think that mine were put together by the chemist. They didn't come under a name brand like Zaditen

    I am really hoping that the spacy feeling eases up soon... I guess it is far better then brain fog, I can think fairly clearly at the moment!