What a bugger that your muscle issues are back... but how handy to have all those books at your finger tips and to have a buddying scientist/doc in the family! :)

I had meant to add in my last post that I have noticed a big change in facial/chest/shoulder flushing.. it has been very minimal since starting the trial and i havent had any red blotchiness that usually comes along with it. In my opinion taking ketotifen is worth it just for this ;)

And just on a side note even though Im pretty sure that I dont have a sulphite sensitivity I have been spliting the capsules so see if i has any effect on the new reactions i seem to be having with my eyes etc.

Steve i hope that you get some answers soon! it must be so hard on your family xo

I thought id drop by for an update

Things still seem to be going okay, my lips no longer swell from using toothpaste except for on the odd occasion, I tried on several occasions to use bi-carb but im not a huge fan lol.
I think that I still need to avoid wheat and dairy although the wheat reactions are less severe then before I started Ketotifen

I have been adding some raspberries and blueberries to my morning banana and rice milk smoothie (loving the colour!) and my reactions are still there but not as bad as before. Fatigue is still a bit of an issue but i missed taking a tablet the other day and realised how great the difference is!!

I am still hoping that being on Ketotifen for another couple of months might continue to improve my tolerance levels

Well the visit to the specialist in Stafford Hospital went well.
He did not know Salicylate was in food, but he was very interested and appears to have good contacts.
The specialist got us further appointment to see a Dermatology specialist and Dermatology nurses in Cannock hospital within 2 days.
But we went to the Doctors and got a prescription for Betnovate cream also. The doctor said is Skin has eczema and is happy to prescribe steroid creams.
We were using Betnovate RD cream on his skin (or 4 in 1 as they sometimes call it) and is it 25% the strength of the real Betnovate. We were only using this sparingly and it was not doing anything.
We are using the Betnovate all over daily as advised but the doctors and nurses and my son’s skin has improved dramatically.
He can not have this for long but the nurses have also given us Eurmovate which is lower strength to step down to when is skin is perfect.
The nurses have also gone through his creams and we have lots.
The trouble is they all have chemicals in which he can not have.
Also, the base for the creams have emulsifying wax in which is made of plant material.
They have given us which they think is good 50:50. You could tell as they were nodding at each other.
It is liquid paraffin 50% in white soft paraffin made by J.M.Loveridge Ltd, 6A Kingsway, Off North Way, Andover, Hants. SP10 6LQ.
It has only 2 product in both derived from Crude Oil, which is itself derived from animals, so is working well.
He is having this 50:50 on 6 times a day. And before and after baths. They have said to only bath him for 5 mins as he will loose the moisture in his skin.
We were very suspicious of the Hydromol we were using and we think he has improved through switching to 50:50.
His improvement is dramatic with this and he is back at nursery and coping.
He does not have any itching in the day or night !!!! Hurray !!!!
It has really taken the pressure off.....
We are due to go back to the specialist in 2 months and we will see how it goes when we stop the Betnovate and switch to Eurmovate.
(Please note Betnovate is only a medium strength steroid cream.)
The Dermolgical nurse have also prescribed Ucerax (Hydroxyzine Hydrochloride) for the itching. It is a anti-hitamine and was next to the Ketotifen in there MIMS book which tells them what to prescribe. They said they would not normally prescribe the Ketotifen and left it at that.

We are very please with the help we are getting

Still doing fine on the ketotifen..feeling well..
Arrgh.. I have put on weight... LOL
I have recently been wearing some cropped elasticated trousers as it has been hot and I went to put some normal trousers on the other day that I hadn't worn for a little while and nothing fitted eeek!
I don't think this is due directly to the tablets..although "weight gain" is listed as one of the possible side effects. I am conscious that I have been eating more..
so guess who is on a DIET ! A very interesting one considering the small range of foods I can eat lol!
Lindy xx

I just started ketotifen today for the first time, in addition to a 2.5 mg/day dose of prednisone. I'm cautiously optimistic, based on the reports so far. Thanks to everyone for sharing their experiences! I'll let you know how it goes.

The chemist here in the Netherlands also took pity on me, with bright red, peeling hives (brilliant!) all over my arms and eyes, and gave me some cetomacrogol cream, which I had never heard of before. It's great so far -- no problems. And actually lets my skin breathe, unlike Vaseline.

I thought I would report back on my initial Ketotifen trial. I started taking it 3 days ago with a full 1 mg pill. I felt very drowsy and fought it for about 5 hours, at which point I gave in and went to bed. I should have known better! I'm hypersensitive to most meds. The next day I started on a half pill morning and evening. Much less tired as a result.

I am currently traveling in Peru for work and have few options for foods. I ordered plain grilled chicken last night with french fries. The fries, made from Peruvian yellow potatoes, had skins. I am reacting ever so slightly to something this morning, but a lighter sals response than I've had in the past -- just some limited peeling around the hives on my eyes and arms rather than full-blown red, itchy and painful reaction. I haven't done an official sal test, though, since I'm not sure whether the frying could have tempered or neutralized the sals in the potato skins. So, I am hopeful. I will go slowly.

More in a few days.....

Hi Larken
Peru? How exciting :o)
I managed to eat a whole dish of potato fried wedges with their skins on in an organic cafe a few weeks ago without any reaction :o)
Hopefully your tolerance level will improve like mine..
Lindy xx

I'm back :) have been super busy lately and haven't had a chance to get on the forums. Exciting to see a few other people trialling Ketotifen! And it does look rather positive.

Lindy I have found that I am also handling smells much better then I used to, doesn't seem to bother me instantly like it used too. I am still on 2mg a day and don't have any related tiredness anymore although I still have to be careful not to push myself too much or I am tired for a couple of days. I do manage a very short workout every couple of days but am still having a bit of trouble with muscle recovery.. could be due to diet restrictions

I am finding that they brain fog, memory problems, and other more neurological symptoms only come back when I get tired. Í'm still avoiding most muscle aches, crawling skin, itching, problems, they seem to be fairly well under control.

When my doc asked how the trial was going I told her that Ketotifen was keeping me sane :) which I exactly what it does for me... also my anxiety seems 99% linked to my SS which now makes so much sense to me.. before I felt like two completely different people in one body. I am known for being laid-back which I feel is the real me and then there is this anxious stress head that pops up from nowhere :) that along with the other symptoms made me feel like I was crazy LOL

Fabi and Larkin.. welcome to the trial! I have found that over the couple of months that i have been on the capsules that the symptoms decrease, seems to build up in the system. Teefee who drops in the forums occasionally has been on Ketotifen for 18 months (correct me if im wrong!) and I remember reading that she said she found that she didnt get consistant results until she had been taking it for around four months. Fabi how long have you been taking them? it might be worth trialling the lower dosage for a while longer?

I have found that I have put on a little weight also (not fair considering I fly out for Greece in less then a week, my bikini is not happy ;) ) my doc said that Ketotifen stops you from realising that you are full and thats why weight gain can be a side effect. I think it could also be due to fluid... will be interesting to see if it continues over time. I have (am trying) to go gluten and dairy free as I know that I have problems with them. Will have to see if it has an effect on my weight.

I hope everyone keeps getting good results!

Thanks for your comments, Lindy and Fabi. I have been taking the Ketotifen for two weeks now. My reactions are better. This morning I ate several large chunks of papaya with only neurological symptoms, so that's good! I would really, really like the brain fog to go away, too. We'll see how it goes.

The only thing is that the sleepiness has stuck around. I've cut back to a half milligram twice a day. I am also feeling a bit down and moody. Is this sals or Ketotifen side effect? Not sure. I'll try to be good for a few days and see if the heavy mood lightens.

Hi all
I've been away for a week in Cornwall (for non UK members this is a lovely County far South West England with lots of cute fishing villages) It's my favourite part of England.
We stayed in a mobile home on someones land on a cliff overlooking the sea. Lovely.. lots of cute little baby bunnies in the field next to us..
The first day I had slight problems..my voice went croaky (one of my first signs) and I had mild stomach cramps and "jumpiness" to sounds..The caravan smelled terribly of cleaning products (the poor woman who owned it had obviously spent ages cleaning it). By the second day I was fine..
I couldn't find anywhere to eat out but did manage to eat a couple of organic ice creams :o)
I am tackling the weight gain.. I dropped a couple of lbs before I went away and I was careful what I ate while away so should still be ok.
My leg muscle problems have improved so much I was able to go clifftop walking - we walked 2.5 miles (and 2.5 miles back) along the clifftop with lots of steep uphills and downhills! I would not have been able to that a few months ago :o)
Good to hear everyones progress on the ketotifen - keep up the reporting :o)
Now I have been on the ketotifen for some time I must start increasing further the amount of sals I eat and see what happens.. watch this space..
Lindy xxx

Teefee! it's good to hear from you again. Congratulations on your doctorate (it's not in chemistry is it?:).

Hi,
Just checking in. Hi Rita, Lindyd!

Glad everything is going well for those on the ketotifen trial. I haven't found a better solution, but it's not 100%. I have to be careful with H S foods, especially wine, tomato, melon. I haven't tried everythiing, and avoid high sal foods, but I can manage normal lettuce, the occasional pizza, and a little bit of most things if I don't go OTT.

Rita, LOL! No, my PhD is in Education! Nothing to do with Chemistry or Biology.

Nevermind.

That really was nice,someone helpful, doesn;t happen everyday,nice when it does,Jean