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  • "Blondie" started this thread

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Reg: Feb 28th 2007

Location: Surrey

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Thursday, June 11th 2009, 3:36pm

Buying Intralipids

Hi All

I am posting this hoping someone may be able to help.

I have previously purchased IVIG/Intralipids from Healthcare at Home. They charge a fortune for the nursing care and I am looking of a way to save some money on future transfusions and to do this means being able to get only the drug on prescription and hire my own nurse.

Luckily I have a nurse who can do the transfusion for a quarter of the cost HAH are charging however HAH will not give the drug without providing nursing care...(which is fair enough).

I am wondering if anyone has purchased this from somewhere, an online pharmacy or walk in pharmacy? I have done a little homework and what I need is

Intralipid 20% infusion 500ml. I found it online at a chemist that you obviously have to provide your prescription to for £30. HAH charge around £10 for the drug so are cheaper but their nursing cost is alot higher. I would like to hear if anyone else has purchased and their experience?

Thanks!

xx
TTC naturally, five miscarriages 2006-2009, Immune issues

BLONDIE'S IMMUNOLOGY DIARY

JENSQUI

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Location: Edinburgh

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Thursday, June 11th 2009, 4:21pm

RE: Buying Intralipids

obviously can't help, but I can't see why there would be a problem purchasing this independently ?(
(btw, googled it in case I could find anyone on another forum who mentioned it. Didn't find any, but did find what you needed for £20.67 + £2.95 delivery from another online place)

xx


me 38, DP 44, ttc since 2005
BFP May 07 - HB seen @ 8 wks but CRL only 7 weeks, m/c @ 9 wks
BFP Jan 08 -m/c @ 11 wks (D&C)
BFP Jun 08 - early loss
BFP Dec 08 - HB & CRL ok @ 8 wks, but sac too small, m/c @ 9 wks
BFP Apr 09 - Martha born 9th Jan 2010
BFP Feb 12 - Eliza born 13th Oct 2012

  • "Blondie" started this thread

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Location: Surrey

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Thursday, June 11th 2009, 4:31pm

RE: Buying Intralipids

Oh thanks Jen...I found one that did it for £30 (not sure of delivery charge)...would you pm me the link?

x
TTC naturally, five miscarriages 2006-2009, Immune issues

BLONDIE'S IMMUNOLOGY DIARY

JENSQUI

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Thursday, June 11th 2009, 4:36pm

RE: Buying Intralipids

no worries - have pm'd you x


me 38, DP 44, ttc since 2005
BFP May 07 - HB seen @ 8 wks but CRL only 7 weeks, m/c @ 9 wks
BFP Jan 08 -m/c @ 11 wks (D&C)
BFP Jun 08 - early loss
BFP Dec 08 - HB & CRL ok @ 8 wks, but sac too small, m/c @ 9 wks
BFP Apr 09 - Martha born 9th Jan 2010
BFP Feb 12 - Eliza born 13th Oct 2012

honeyz

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Wednesday, September 8th 2010, 10:27pm

I dont get it. You say £30 for the drugs but dr gorgy's office quoted me £350 for an infusion of intralipids.
Can you plz explain this to me
thnx
honeybee

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Thursday, September 9th 2010, 6:14pm

You will still have to pay for a health at home nurse to administer, which I think is a couple of hundred pounds (can't remember of hand and not had it done - yet!) so it is cheaper. The actual drugs themselves are not expensive, its the administering that is. Dr Gorgy is known to be good, but a bit more expensive. I am dealing with him too. xxx



We have 3 snow babies waiting for us.

BraveGirl

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  • "BraveGirl" is no longer a member of FZ

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Thursday, September 9th 2010, 6:23pm

healthcare at home charge £291 including drug and nurse to come out and do the infusion.

I am sure you can source elsewhere but to be honest I did not need the stress so just paid for it.
IVF 1 :BFP: baby5 in heaven 6 weeks
IVF 5 :BFP: Immune protocol Care Sheffield
Oscar Miles arrived 15 April 2011 weighing 6lbs 14oz
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honeyz

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Thursday, September 9th 2010, 8:33pm

thank you for your replies also i was surprised to see tht the clexane was around £300 for 4 weeks and the preds 25 mg for 6 weeks in the hundreds too. Is this how much you guys paid?
honeybee

BraveGirl

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Thursday, September 9th 2010, 8:39pm

no i did not pay that much for those drugs, I would need to check but I think it was less than that.
IVF 1 :BFP: baby5 in heaven 6 weeks
IVF 5 :BFP: Immune protocol Care Sheffield
Oscar Miles arrived 15 April 2011 weighing 6lbs 14oz
My Diary

honeyz

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Thursday, September 9th 2010, 8:49pm

well brave girl iv read what ever uv written on these forums and u are definatley a immunology guru so could you please tell me how much you paid and from whom. dr gorgy has given me a prescription for clexane and preds and for the intrpilids its £350 which i have to go back to his offices to get administered.
as for dr gorgy he is very matter of fact and gives short quick answers but i guess the clock is ticking and time is money.
So tht is what he has suggested for me, from day 5 of stims take the preds 25mg and the clexane and then between day 7 -9 of stimms take the intriplids. he said if i get pregnant then that would b a miracle, lol no im saying tht he said that if i do then I have to do the chicago tests and then see where to go from there.
anyone have any thoughts on this protocol? Im a bit scared as im the kinda person that doesnt even take a paracetomol lightly so this is real heavy duty for me. But as long as no side effect is permenant then kay sara sara.
honeybee

chatterbox

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Thursday, September 9th 2010, 9:01pm

I'm quite luckly my GP prescribed me steroids (which are dirt cheap anyway) and as i'm in Wales they were free!

The next time (!!) we use IL's my doc said there will be trained community nurses who should be able to administer the drugs. This would be great and mean huge savings. Why not investigate if this is possible. Although like BG I would probably be tempted to use Healthcare at Home as the nurses are super proficient and well trained.

xxx

Me 40 DH 35 TTC 10yr
peritoneal mesothelioma, cystectomy 97 & 00
peritonectomy, lost both tubes & most of left ovary Aug 07


Dec 07 BFP b/ov m/c 9.6wk
July 08 BFN
Dec 08 BFP b/ov m/c 9.6wk

July 09 BFN
Nov 09 BFP 2 x sacs 1 b/o 1 no hrtbt m/c 9.2wk
May10 BFP at 8+4 m/mc @10wk scan ERPC

Found: High NK cells, DQ Alpha match, LAD neg & PAI-1 pos...

NOV 2010 - Immune IVF at CARE Manchester
:BFP: [zx076] :girl: born 25/8/11

OCT 2012 - Immune IVF at CARE Manchester
:BFP: [zx076] :boy: born 24/6/13

BraveGirl

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Thursday, September 9th 2010, 9:01pm

i got my medication from healthcare at home with the prescription from Care

I now get my medications from my GP which are free because I am pregnant but are otherwise £7.50 but I guess it will depend on the GP as to whether they would be willing to prescribe, you could ask them and see what they say.

you are lucky gorgy is prescribing without any testing to be honest with you

I paid:

for 96 prednisolone tablets £4.80
for 40 clexane injections £139.20

my protocol was

day 1 start bureselin
day 2 add in menopur, plus viagra 50 mg twice daily for 8 days, plus aspirin twice daily
day 4 add in 10mg prednisolone, plus first intralipid infusion
carry on until trigger, at trigger stop aspirin
egg collection
EC plus 2 - increase steroids to 20mg a day, start 40mg clexane once daily, uterogestran 200mg three times daily, cyclogest 400mg once at night, climaval 2mg three times daily, 5mg folic acid once daily, vitamin B6 and B12
BFP second intralipid infusion
end of 12 weeks start to wean of all the drugs.

the only comment I would make is that IMO after the BFP is too late to be getting tested. you need to get tested before the cycle or if not then be treated as though you have immune issues, no point getting you pregnant then waiting to see while not treating you, that makes no sense to me. It could take 4-6 weeks to get results from chicago and what medication would you be on at that time to sustain te pregnancy.

my other slight concern is that in some people getting ILs and steroids might not work and might be counterproductive, that is why I would encourage testing before treating. BUT if Gorgy is happy with it, he must know best I am sure.
IVF 1 :BFP: baby5 in heaven 6 weeks
IVF 5 :BFP: Immune protocol Care Sheffield
Oscar Miles arrived 15 April 2011 weighing 6lbs 14oz
My Diary

This post has been edited 3 times, last edit by "BraveGirl" (Sep 9th 2010, 9:11pm)


honeyz

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Thursday, September 9th 2010, 9:08pm

:thumbsup: thankyou bravegirl xx
did u then increase ur steriod dose after egg collection? and did u get any side effects.
honeybee

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Thursday, September 9th 2010, 9:10pm

oh sorry, have edited my protocol.

please remember though that te protocol was devised for me and my issues, the amount of drugs and when to take them etc was based on my chicago results, the DQ alpha match, my TNF and NK cell results and my CD19 etc. this protocol wont be right for everyone and may be wrong for some people.
IVF 1 :BFP: baby5 in heaven 6 weeks
IVF 5 :BFP: Immune protocol Care Sheffield
Oscar Miles arrived 15 April 2011 weighing 6lbs 14oz
My Diary

This post has been edited 1 times, last edit by "BraveGirl" (Sep 9th 2010, 9:12pm)


honeyz

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Thursday, September 9th 2010, 9:32pm

do you think i should only take 20mg of steriods I do think that 25 mg is a bit of a high dose, do you not have to start on low doses and then work urself up?
Also bravegirl i think ur right about the doing the chicago tests after pregnancy but to b honest i switched off at tht point all i was thinking was will i get to tht point rather then wht to do after.i also hear you about the drugs being counter productive without testing first but dr gorgy said to me that well uv had 3 failed cycles if you jst do another one why would the outcome change, So he suggested doing these drugs and see what happens.
Im going to try go to my drs 2morw and see if i can get a prescription for steriods and clexane but im not holding my breath, wish he wuld though.
sorry for all the questions i really appreciate ur replies as u can tell im scared of all this.
xxx
honeybee

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Friday, September 10th 2010, 5:48am

Honeyz,

You really really must take advice re dosing etc from your doctors and nowhere else.
Ultimately as BG says the whole point of immune testing is to identify problems and treat them appropriately. Treating things empirically ie. treating regardless without testing is never ideal. However if the drugs have few, easily identifiable side effects then they may well be prescribed like this.
Clexane, aspirin, high dose folic acid and B Vitamins all fall into this category. They are all specifically to treat certain issues, none of which I or most of the ladies receiving them have. However as the cost is small and the risks small it makes sense to give them.

Steroids however definitely do not fall into this category. They are v powerful drugs with a huge range of effects. If you take them it has to be precisely as the doctor orders. Everyone's protocol will be different and it's vital, for numerous reasons, that every doc treating you knows exactly what you're taking. Generally with steroids you start at whatever dose is needed, whether it's high or low. The time to be careful is when you stop them as high doses will have affected your body's ability to produce its own natural steroid so the tablets should be weaned off slowly. All of us on FZ can share our experiences and advice but we're not the people to ask re doses etc.

Personally I share BG's reservations about testing once you have a BFP, I think far better to go into a cycle fully prepared, even if it means a delay. However I understand that that isn't always possible. Whatever you do though, sometimes you just have to take a leap of faith. Dr Gorgy treats a lot of immune patients, and as your prescribing doctor, you have to do things exactly as he says, or if you're uncomfortable with it, discuss with him and see if anything can be altered. The drug doses you are on should be based on a huge number of factors, including previous medical history, your physical condition, ideally any identified immune issues, and then the benefit of years of training. We just can't know any of that on here, and aren't doctors.

Sorry if I sound unhelpful. I genuinely don't mean to be. I just want you to have a well thought out, tailored, appropriate immune protocol and I'm worried that at the minute you aren't comfortable with what you're taking, when you really really have to be.

More positively I can say that clexane is quite a bit cheaper from Central Homecare than getting it from Boots etc so it might be worth asking them. I had no luck with getting clexane scripts from my GP but it's always worth a try.

Good luck honeyz, I hope all works out this time.

Xxxxx

Dalia

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Monday, March 28th 2011, 2:45pm

Intralipids

Hi Ladies,



I just found this thread and would like some more info on intralipids.



I am with dr.G. and he told me that I would need intralipids infusion on my next ivf cycle.I am going abroad for IVF as it is so much cheaper,so I just checked if I could have intralipids done there so I would save some more cash plus 1 flight to uk and back (if I would do it trough G).So I would like to ask of anyone done this abroad and is there any specific way that it needs to be done.All I know is that I could get Intralipids 20% for around £12 for 500ml or £6 for 100ml.My friend is a nurse so I hope she could do it,unless there is a very specific way.Or shall I go through G.?

Any suggestions or advise would be much appreciated!



xx
Every step is a step closer.

ruthie

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Monday, March 28th 2011, 8:38pm

You can definitely have them independently and it will obv be much cheaper and less stressful. The infusion has to be done in a specific way. Mine is 100ml intralipids diluted into 500ml saline and administered over 2 hours. BUT you have to do it exactly how Dr G says. I get Healthcare at Home to do it here so that I can have it done at home and they have to follow the instruction to the letter. Presuming that they are prescription only in the country you are having tx in, then your friend can administer them, but she can't decide how. That is the job of the prescribing doctor. So you'd have to get Dr G to give you a script which specified precisely how the ILs are to be given and then your friend would have to do that. From a technical point of view though, it's just setting up an iv infusion, so if your friend is happy to do that then there's no reason why you can't have them done wherever.
The law will vary from country to country but bear in mind that UK law holds the administering person responsible for any mistakes, ie. if a nurse makes a mistake, or something goes wrong with the tx, they are held responsible (assuming the prescription was accurate of course). Therefore, if the law is the same, your friend would be liable if something went wrong that was related to her iv line placement, or getting the rate of infusion wrong. In actual fact, with ILs there is very little that can go wrong, assuming that proper iv line placement procedure is followed, but it is worth being aware of that point.

I would love to have a friend who would administer for me, it would save me hundreds of pounds, so if you can make it happen, go for it.

I'm assuming Dr G will be happy to provide you with a script, I see no reason why not.

xxx

Dalia

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Tuesday, March 29th 2011, 10:54am

Thanks Ruthie for you response.I will have good think about it as I do not want to have any chance for non success,but as you said having the right intructions and experienced nurse very little can go wrong.

If it is not my friend-abroad is so much cheaper,I could find a doctor or nurse to do this infusion for probably £10 or so,I cant believe it costs around £300 in UK.
Every step is a step closer.

chatterbox

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Tuesday, March 29th 2011, 5:08pm

Hi Dalia

I've always used a Healthcare at Home nurse but when I did think about trying to find an independent nurse it proved difficult. The "community" nurses who were meant to have been trained (I mentioned in a previous post) to do this don't seem to have materialsed yet.

The ICU nurses that I did know were hesitant to canulate & infuse me in case anything went wrong - reaction etc. (They both worried about being struck off if anything went wrong). So I respected that. Then my acupuncturist who is an RAF medic offered to do it! I declined.

Just make sure you're with a trained professional - the H@H nurses are canula specialists and a lot have come from oncology backgrounds so they really know their stuff.

Good luck! x

Me 40 DH 35 TTC 10yr
peritoneal mesothelioma, cystectomy 97 & 00
peritonectomy, lost both tubes & most of left ovary Aug 07


Dec 07 BFP b/ov m/c 9.6wk
July 08 BFN
Dec 08 BFP b/ov m/c 9.6wk

July 09 BFN
Nov 09 BFP 2 x sacs 1 b/o 1 no hrtbt m/c 9.2wk
May10 BFP at 8+4 m/mc @10wk scan ERPC

Found: High NK cells, DQ Alpha match, LAD neg & PAI-1 pos...

NOV 2010 - Immune IVF at CARE Manchester
:BFP: [zx076] :girl: born 25/8/11

OCT 2012 - Immune IVF at CARE Manchester
:BFP: [zx076] :boy: born 24/6/13

Posts: 2

Reg: Nov 16th 2011

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Wednesday, November 16th 2011, 11:33am

intralipids

Hello
I just signed up to this site today after being inspired by these stories.
We have been on a 5 year roller coaster of IVF treatment, ONe suucessful pregnancy, my 3 year old daughter, 2 miscarriages, the 2nd one at 12 weeks this year and 6 rounds of IVF.
After much research on our part we have been immune tests and found i have high level attacking killer cells and need intralipid infusions and y husband has high dna fragmentation and been recommended vitamins.
we also read about soya isoflavens too.
my query is can you just buy intralipids and administer at home? our consultant strongly feels that we would stand a good chance of a natural pregnancy with the infusions but the clinic will not provide the infusion without the ivf. this will be our final attempt after spending £££ so if we can try a way wihtout that it would be great.
does any one know any more about the soya isoflavens and the intralipids and any resitrictions or guidelines around them?
be most grateful

thanks
x :)




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