Hi all my daughter has a dairy and lactose allergy and also suffers from Fibro. She has been prescribed Amitriptyline but this contains a small amount of lactose. This she could tolerate when she was on 10mg but since the doctors put her up to 30mg she has been suffering. I suggested to our doctor that maybe an Amitriptyline liquid would be better but he was not sure this existed but I am sure it does, if not the liquid do any of you out there in cyber space know of any other lactose free meds that can help. By the way I am in the UK so has to be something UK doctors will prescribe and my daughter is only 17 so again has to be something they will prescribe to someone that young.
Thanks in advance for any help you can give
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hog2203
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Your daughter has Fibro, gosh that's young. Is she recently diagnosed or has she had since a younger age? Incidentally, UK Fibromyalgia have featured an article about 'Fibromyalgia in Children' in this months, FaMily Magazine which may be of interest.
Please see this link for information about Amitriptyline Suspension, at first glance I cannot see any Lactose in the ingredients but I'll let you read it more thoroughly, here's the link;
Thank you Mdaisy, yes my daughter was diagnosed around 2-3 months ago although we have been fighting for 2 years tto get a diagnosis. I was diagnosed about 7 years ago after suffering 10 years and my mother, sister and two aunts are also diagnosed with Fibro. I have another daughter who is 18 who has hyper mobility so it is looking like the Fibro gene (if there is one) runs strong in my family. Thanks for the link I will talk to my pharmacist as they are more helpful than my doctors and know my family better than the doctors.
I am so sorry to read that your daughter has this illness at such a tender age. I am also lactose intolerant but I appear to be okay with my medication and I take Nortryptaline which also contains a small amount of lactose. It is also present in so many other medications.
I sincerely hope that you can find some resolution to this issue and find your daughter the treatment that she undoubtedly deserves.
Sorry to hear your daughter has been diagnosed so young. Hopefully they'll now be able to find the best treatment for her. I'd recommend you speak to your local pharmacist - if there's an independent that would be best as the chains are limited by what they are allowed to stock by head office. I have a similar problem with aspartame. Not allergic but gives me awful IBS and makes my fibro worse. My pharmacist was great searching through all the variants to find a calcium/vit D supplement without when the one I was given made me ill.
I hope your lovely daughter is soon feeling much better xx
Thank you mistymeana, I use Tesco pharmacy but have been going for so long and so often to pick up meds the staff there have become like family. They are no longer interested if they stock a certain medicine they point me in the direction where I can purchase it. I must admit living in a relatively small town is better in some aspects as you find people get to know you better then they will treat you in a way that is best for you and not their profits.
Thank you so much for taking the time to reply and for caring.
Hi Hog2203, My heart goes out to your daughter being diagnosed with Fibro @ such a young age. Also for yourself a sufferer, knowing what she is going through.
I have Lactose Intolerance, was prescribed Amitriptyline, was prescribed the tablets but I could"nt do a thing with them.
Yes there is Anitriptyline in Medicine form as I am currently on it at this moment in time.
So far it has not interfered with my Lactose Intolerance. So it its out there available for your daughter to try @ least!
I hope you can find the right combination of Analgesics to help your daughter with the horrendous pain that we know so well, goes with Fibro. Sometimes Pharmacists can be more helpful to put you on the right tract, I know they cannot prescribe but you can ask your GP for any useful suggestions Pharmacists may have.
Best Wishes to your daughter,Pray she can get the right treatment to help her, Also best wishes to you too. I have a son who has had Fibro since he was 18 years old and also suffers with two extremely rare Progressive, incurable, fatal illnesses, he is 29 now and in a Wheelchair, so I have some insight and empathy of how you are feeling.
We seem to be able to cope with "Illnesses" for ourselves but when it comes to our daughters/sons it is quite a different matter.
In my thoughts and prayers both of you. Also other members of family who suffer with Fibro!
Thank you Betty Baby for replying, it is good to know I can get the right medication for my daughter here hopefully it is that which has dragged her down over the last few weeks.
I am really sorry to hear your son is so ill, at 18 kids should be experiencing the best life has to offer not having to suffer because of an illness they don't deserve. I hope your son manages to enjoy his life and get to do the things he likes I know it's hard I find myself driving for 2 hours just to take my daughter to London as she enjoys the street markets but within an hour we are both shattered and need to go home. I am just grateful I can let her experience the things she wants to, otherwise she is just sitting in doors.
My thoughts are with you and your son, I really hope this evil condition does not take away all the good times in between all the bad after all it is only the thought of just one more good moment that gets us through those long dark depressing days.
Hi Hog2203, Thank you for your reply with such kind words of empathy for my son especially. Unfortunately one of his conditions, is the worse possible Pain Dystrophy there is, on the Mc Gill Pain Scale it it right at the top, more painful than cancer, child-birth ect. He is in this pain 24/7, with NO respite!
Even high doses of Morphine and Break through Morphine are not doing a thing for him today. My heart bleeds when I hear him scream out in such pain. He has even wanted to chop his own leg off because of the pain!
Sadly it has robbed him of his life. Whilst taking A Levels the School had him down as an Oxford/Cambridge Student as he had a very high level of intelligence and his Ambition was to become a Doctor.
He did manage to get to Swansea, where he had Disabled Room on Campus and all Staff were brilliant with him.
He managed two years with 1:1 marks for both years! Unfortunately he contracted Glandular Fever and never, ever recovered from it since. Made his Fibro much worse! He has learnt to drive but very rarely is he out of enough pain to drive his Pride and Joy, his lovely car!
As mums we do what ever we can, We were recently told that one of his other conditions, will effect his Life-Span, taking ? 20 years off his life!! Whilst we went up to see a Professor in London who Specialises in Syndrome. There are only 3 Specialists in the World, so you can see how complex and Rare conditions are.
He has also been resuscitated on 3 Separate Occasions. Thank the Lord he was in hospital the three times it happened. He also has Sleep Apnoea, stops breathing in his sleep 160 times per hour!!
It is like living with a "Ticking Bomb!", no wonder I rarely get to sleep @ night!!
I am just coming through a Nervous Breakdown myself, which is hardly surprising!!
Any way enough of me babbling on, apologies for that, I am just glad that I could be of some help for your daughter. As us mums know we"d get to the moon, if the answers or help were there!!
Look after each other. Please keep taking her out. My son and self are both house-bound @ moment, just grateful I have wonderful husband who cares for us both! He gave up a Brilliant Job with Salary to match BUT money isn"t everything, He was advised to by my Consultant as I could"nt look after myself, that was 7 years ago. We hav"nt strangled each other YET! But it has taken the both of us this length of time to adjust!
I was used to him being out 12 hours day, maybe 6 days week, so had my own routine, which was distrupted/invaded! Also having be fortunate enough not to have lived off just Benefits has put a huge strain on us all as a family!
God provides though managed to put our youngest son through Uni, he Graduated last year. Sadly I was in Intensive Care Unit so could"nt go (thats another story).
Sending you Positive Healing Energies. God Bless, Betty Baby X
Hello! I work in Pharmacy (in Tesco actually!) and can confirm that amitriptyline liquid is readily available as a 25mg/5ml or 50mg/5ml strength, which is more expensive than the tablets, but you can reassure your GP that it isn't prohibitively expensive! There may be a 10mg/5ml version too, but I think that's a 'special order' and may cost more than your doctor would like to pay. Just a thought! Generally, in my experience, liquid versions of meds avoid lactose as they are bulkers for tablets, but it can be worth checking individual maker's versions on both. We have patients that are lactose intolerant who have most of their medications in liquid form, and where not available we phone all our wholesalers to source lactose free versions, it's a labour of love!! Hope you have some success with this - and next time, tell your GP to get his BNF out and check!!!
I hope that you are as well as can be? Thank you so much for your post on this subject. I take Nortryptaline and was wondering if this came in liquid so can be lactose free please? I would be really appreciative of any information that you can afford me in this matter.
Hi Author, I'm new here and will tell my tale at some point, I guess, but I'm ok, and what I'd consider 'low level' fibro, so I'm pretty lucky, thanks for asking. I have looked into Nortriptyline and there may well be an unlicensed version available as a liquid - that simply means it will be obtained from another country or made to order, not as awful as it sounds! I would need access to the special obtains supplier to find out more, not available at home, but I'll make a note to take a look when I'm next at work, which will be Wednesday.
Thanks tiredofbeingtired I am grateful for your time and reply, I am beginning to understand that my doctor like many others could be treating my daughter on budget rather than condition. I will certainly be telling him that the Amitriptyline that he seems to not know exists is available from most UK pharmacists and it could be worth him prescribing it. I feel it would probably have more effect if I point out that by prescribing Amitriptyline liquid at a higher price than tablets may be more cost efficient as he will not need to prescribe the meds to combat the effects of the lactose.
I'm sorry to hear about your daughter. I have fybro too and also have a lactose intolerance and it is awful that they use it as a fillet for so many medications! I get severely sick and cannot tolerate noritriptyline or amitriptyline. I have so many damn medications I've tried that all make me sick. The worst is that 9/10 pharmacists do not even know they have it in it and when I ask them if they make it without they tell me to look it up on the internet cause they don't know! How could they not know? Unbelievable and very sad.
Anyway, good luck. The only thing without any that helps a bit is the flexeral but that makes me so sleepy I am a zombie for many hours even the next morning 😢
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