IVIG in the UK?

[Jamie_james]

Hi folks 

I've had a chest infection for the last four weeks and I'm now on my fifth lot of anti biotics this year. 

I spent 7 days in bed recently and I was also feverish. 

Reading on here it seems that some of you folks have been put on IVIG when you have had similar experiences. 

( note: I have already  had my flu jab and also both pneumonia jabs) 

My haematologist is aware of my situation and hasn't made any suggestions other than anti biotics so it made me wonder - is IVIG available in the UK? Or perhaps is it called something else over here?

Best wishes to you all. 

Jamie 

[Newdawn Administrator]

Hi Jamie,

Sorry to hear about your continuing chest infection. Has your haemotologist established that your immunoglobulins are low? IVIG is given if the IgG level falls sufficiently low to cause frequent infections. It's an expensive process but is available in the UK. 

Initially I thought you meant IV antibiotics which I've recently had but my chest infection was pneumonia.

If it's not clearing, get back to your doctor for advice. Have you had a chest XRay or other tests?

Newdawn 

[Jamie_james in reply to Newdawn]

Hi Newdawn 

Glad to hear that you are on the mend now. 

Just looking over previous blood results it doesn't look like  they test that in my regular tests. All I have is wbc, neutrophils, lymphocytes, hb and platelets. 

I'm expecting a call back from my specialist nurse so I'll ask if they can test for ig next time too. 

I had an X-ray last week and a cat scan about a month back - all clear. 

Also had my blood tested for pneumonia ( crp test I think it was called ) and that was all fine too. 

I'm just a little worried at how long this is dragging on.

Actually I have had the cough since September but it was not productive til about Jan. This last month has been dreadful though. I can't walk more than 10 feet without having a coughing fit. 😞

[Newdawn Administrator in reply to Jamie_james]

Thanks Jamie,

Maybe your haematologist would refer you to a respiratory specialist if this persists. Good to see your tests were clear though, that's reassuring. You're right in saying they don't routinely test our immunoglobulins unless they're known to be dropping but it would be worth having them done. Failing levels can lead to more recurrent infections. My IgM is particularly depleted.

Thanks for your best wishes and hope you get this sorted soon. I still have a bad cough and it's very debilitating and irritating!

Newdawn 

[wmay13241 in reply to Newdawn]

My wife's NIH CAR-T oncologist prescribes another IVIG infusion if her IgG drops below 400. So far she has had no infections. She has not had any noticeable side effects from IVIG.

[Justasheet1]

Here is what Dr. Sharman said about IVIG in CLL. 

"One question I think we'll probably get to here in a little bit is a medication called IVIG. And IVIG stands for intravenous, that's the IV, immunoglobulin, IG—so intravenous immunoglobulin, IVIG. And this is essentially a pooled blood product, so from blood donations they extract the serum and obtain all the antibodies. They pull those together and then give antibodies to patients.  

If you look at patients with chronic lymphocytic leukemia, they typically will have lower levels of antibodies, whether they're treated or untreated because of that cancer of the immune system, this is one where we can get some numerical readout, but again numbers don't tell the whole story. So we can give IVIG, and in some patients it is appropriate, in some patients it can be life-altering, and in some patients it's overtreatment. 

So how do we decide? We get a little bit concerned when somebody's antibody levels, their IgG levels are lower than 400 milligrams per deciliter, but that as a number doesn't tell us we have to do anything. If they're low and are having frequent infections, frequent sinusitis, hospital admissions for pneumonia, that's a time we may use IVIG."

Jeff 

[Jamie_james in reply to Justasheet1]

Thanks Jeff

[Alan20]

HI Jamie, I spent the 2014-2015 winter pretty much ill throughout its length, and subsequently was sent to see an immunologist at Barts in London. Initially I spent a couple of moths on antibiotics, but moved onto IVIG after the side effects of the antibiotics made all the skin on my hands and feet fall off. I now have IVIG every three weeks, it has been a life changing experience, only one infection in the last 8 months. Push your specialist to see an immunologist, our situation is (or should be) also about quality of life where it is possible to influence it. Good Luck

Alan

[Jamie_james in reply to Alan20]

Thanks Alan!

[alice111]

My husband has had a chest infection for nearly 10 months now. which started while he was having BR and is totally resistant to antibiotics...We asked about IVIG today but were told that the NHS protocol requires him to have had 4 hospital admissions before it can be considered. The bacteria causing the infection has been identified as HIB. Feeling very despondent as the infection makes him so ill, although the BR has put him in remission from his CLL.

[Jamie_james in reply to alice111]

Mmm that's not great.

I asked my consultant about it and she said pretty much the same as 'justasheet1' posted above. In other words if your IGG levels are below a certain level then you are eligible.

I would be tempted to question the person who told you this, perhaps giving the example of what I was told.

Using X number of hospital admissions as a criteria seems a bit arbitrary to me.

It's not easy but I really think that you have to be a bit pushy in this country.

I finally started to recover naturally about a month back. Had to buy a walking stick as my legs had become really weak, finally got strong enough to give it up about a week ago.

I hope your husband turns a corner soon.

[AussieNeil Partner Administrator in reply to Jamie_james]

Hi Jamie and alice111 ,

The situation your husband is in isn't good Alice and you should definitely ask again whether IVIG can be given - even if only for a once off transfusion. It could be that your husband may qualify under some infrequently used criteria that will still be hard for his consultant to document to the satisfaction of those granting approval, but sadly, I have my doubts.

Jamie_james , I've only heard the dual requirement of both low IgG and frequent serial infections as Dr Sharman said at the end of Justasheet1's quote about determining who should be eligible for IVIG: 'So how do we decide? We get a little bit concerned when somebody's antibody levels, their IgG levels are lower than 400 milligrams per deciliter, but that as a number doesn't tell us we have to do anything. If they're low and are having frequent infections, frequent sinusitis, hospital admissions for pneumonia, that's a time we may use IVIG.' (My emphasis)

IVIG is an expensive and limited availability product - you can't manufacture more to meet growing demand without more blood donors providing the IgG antibodies. That means that unfortunately we must ensure there's an effective way of ensuring what is produced only goes to those that need it most, i.e. those having both low IgG and frequent serious infections; with the two criteria adjustable to limit demand, sadly. Low IVIG is a coarse measurement; it just says you have a low pool of antibodies, not how widely covered you are against pathogens, or how effective your immune system is at fighting off infections. So unfortunately a valid need can only be determined by a patient suffering through sufficient infections after their IgG levels fall below a level that varies from jurisdiction to jurisdiction.

Jamie, if you can confirm with your consultant that IgG below a certain level is all that is required to qualify, then I'm sure that would give hope to other members who are struggling with ill health, but not enough to be admitted to hospital.

Neil

[alice111]

Thank you Jamie ...what makes our situation slightly worse is the fact that my husband had a lobectomy in 2012 for early stage lung cancer...so his lungs are impaired anyway. Happily, his chest surgeon has confirmed that his present problems are nothing to do with the lung cancer which is now described a NED ( no evidence of disease) I think the protocol adopted by our hospital is arbitrary ..I know the treatment is expensive but I am so worried he will develop pneumonia which will overwhelm his weak immune system . I shared this concern with the Consultant but she repeated the mantra " 4 admissions" ...I have told my husband that we will have to start using the A&E route which he is extremely reluctant to do...we know that the poor NHS is on its knees ! I find it odd that they don't routinely check antibodies ...I asked her to do this yesterday and she has included it on his blood form for when she next sees him in 2 months!

[HAIRBEAR_UK Founder Admin]

Immunoglobin testing is not always routine in parts of the UK but if your clinician or you have concerns of persistent and frequent seriouse infection you may have to push for a test. Most CLL consultants are quite proactive when asked or concerned and should test your IgG level. You can find the UK CLL clinical gudeilines recomendations for IVIG use, here onlinelibrary.wiley.com/doi... I think that a lot depends on the opinion of the clinician and your serum IgG level is key

UK department of health, clinical guidelines for immunoglobulin use (second edition update) CLL page seems to have been further updated page 39

PDF download availble from gov.uk/government/publicati...