Coming off the subcut immunoglobulins to see how it goes!

Hi Paul,

This is great news, I bet you are really happy to get some relief from the injections!

I made the decision to come off immunoglobulin about 18 months post-transplant. I went on to pick up loads of infections but I had just had enough of being on stuff and I figured it was time to find how my immune system would do. Here’s hoping you get a really smooth ride!

I’m really interested to read you are not taking penicillin? I was told I had to be on it for life. It’s not that much of a drag but it does throw up some side-effects every now and then, so I was interested to know what they had said to you re:penicillin?

All the best

Greg

Hi Greg

Initially I was also told penicillin for life.. Then when I was on the immunoglobulins the immunology team questioned this as their view was if your immune system is functional why do you need them.. When I asked the haematology team they would say nothing on its own is 100% fool proof so take everything.. which didn't seem particularly scientific, so I came off them.

I was then just on Acyclovir.. which, to be honest, I just kept forgetting to take so I decided to stop all together. (Please don't try this at home folks!). The immunology team didn't seem too worried and their view was if I did get shingles etc then a good dose of Acyclovir should sort it out at that point..

So there are two schools of thought with the penicillin.. 

1) If my immune system is OK then why take it and then if I need it hopefully it will be more effective. (this is my preferred option)

2) They immunology team have completely missed this now I am coming off immunoglobulins! (this is my bury my head in the sand and keep everything crossed option 1 works option)

I have been on them for 3 years now and it is 3 years since I was immuno suppressed with cyclosporine, and 6 years since the SCT.. So I have been patient and I am hoping that now it will all be OK.. Bloods in early September will be a good indicator and if the IGs are dropping through the floor then back on the injections.

Hopefully that isn't the case but I have accepted the fact that I may be on them for life, which whilst an inconvenience, if someone had given me the option when I was first diagnosed of getting through the ALL and SCT, being healthy and just having to have an injection for 45 minutes once a fortnight I would have taken the deal for sure!

Hi Paul,

I do find it fascinating how different SCT centres do things differently. The next check-up with my consultant is in September so i’ll ask him about it then. I get the distinct impression there is a lot of guesswork in blood cancers and their treatment. I remember when I was having a tough time about 8 months post transplant, I was taking a lot of tablets and he said, “let’s stop them”. Just like that I stopped anti-viral, anti-fungal, and some other stuff I was taking. It did make me wonder what the point of me taking it was if it could be stopped just like that!

Like you say, the penicillin is only two tablets a day and I can definitely live with it given where I’ve been, I just like things to have logic. I know this is a futile endeavor, especially in SCT land, but that doesn’t stop me trying!

All the best

Greg

Interesting!

daughter is only on HRT and Levothyroxine, and that’s been the case for a good few years now. She had shingles and yes, a hefty dose of acyclovir sorted that. They discovered the low thyroid levels while she was in for her allo, most likely the result of radiotherapy to mediastinum plus one of her trials. 

She had such a bad winter (lots of nasty infections needing antibiotics) the year before last, that they decided to give her a big regular boosting of I/V immunoglobulins to try to get her ‘base level’ around 6. They will check to see how she’s done in around September time, a bit like you, Paul. 

Hugs xxx

Such a great conversation and all power to your immune system Paul. It will be great for you not having to stick those needles into yourself.

As Greg says, it’s so interesting the differences between SCT Units and as I was discharged by my team last year I don’t actually think much about it all apart from reflecting back due to being on this Community.  

I do go see my GP every three months for a chat and at this point we have agreed not to change anything - "just keep on enjoying life" she will say, but do have full bloods done every 6 months.

I am allergic to Penicillin so am on Clarithromycin for life to cover bacterial infections like pneumonia, skin infections. My treatment made my Spleen a spare part in my body so my immune system filter is not working that great so making me less likely to fight some infections and having had Lung Fungal Infections, RSV Virus, pneumonia and Sepsis a few times over the past winters I will keep taking them. I do have a stock of acyclovir and antibiotics just in case but so far not required.

I also take Adcal-D3. Due to all the skin treatments I have had over the years I have to be very careful in the sun so just need to boost my Vitamin D.

Keep well everyone and enjoy this great weather but we have thunder and lightning at the moment.

My team said before SCT i would be on pencillin for life so that seems to be their policy rather than my particular circumstances. Apart from the unpleasant taste I'm not aware of side effects. But i do worry about anti biotic resistance and whether its a good thing in long term.

On the plus side i no longer seem allergic to pollen and cats. I still don't like dust though. Will have to see what happens during harvest as that usually throws a lot of dust in the air.

Tessa.

Ha! We had that storm about 2am, Mike, loud and flashy! 

I found Adcal d3 gave me awful indigestion so found a source of just d3 and my GP checked and advised about dosage, I take one capsule 3 times a week and it causes far less trouble! I suspect Adcal d3 is incredibly cheap! 

Hugs xxx

..... now a heat wave with us..... just waiting for the snow LOL

I am also on 30mg Landoprazole am/pm (for my Hiatus Hernia) so I suspect that this deals with any indigestion.

With regard to the penicillin I was told for life as well.. perhaps this has been missed by the immunology dept now that I am off immunoglobulins but I am going to see how I get on. I just know to be on full alert if I start to feel ill and there will be no hero stuff here. Straight to the GP. 

But they did ask about penicillin when they phoned so perhaps it hasn’t been missed. I go to the department that deals with all the HIV patients so they have years of experience with immune system disorders. 

Watch this space. Time will tell!!!

A quick update...

A chesty cough and sore throat began on Friday evening .. typical.. visit to GP Monday morning and amoxicillin prescribed. I am well on the road to recovery now the meds have kicked in.

On Wednesday i received a letter from the late effects CNS which confirmed that they thought i was taking Penicillin V prophylaxis for life.. So I questioned it and asked for someone to clarify the confusion. My Leukaemia consultant has now confirmed back on the penicillin daily .. forever!! 

In some ways I don't mind as rather safe than sorry and at least I have been given a definitive answer. He has also booked me in to come and see him in September as he hasn't seem me for around 18 months himself to see how I am getting on.