Coming off the subcut immunoglobulins to see how it goes!

Hi Paul,

I’m glad that you’ve managed to get on top of the chest infection, hopefully you’ll get a bit of a clear run now.

Interesting re: the penicillin, I am not sure what the science behind it is, but I suppose if the experts say it’s needed, it’s probably one of those things to just get on with.

Not sure how you feel about seeing your consultant again? I have to see mine every 4 months (due to nature of myeloma I will never be discharged unfortunately). I oscillate quite a lot between thinking it’s a good thing because at least I get checked up, but on the other hand it’s a constant reminder of all the bad stuff. My next one is due in September and I know in a few weeks i’ll start re-living all the memories that are mostly buried away now.

The other thing your post reminded me of is that I’m not convinced my team are brilliant at keeping their records up to date. Every time I go for a check-up, my consultant always asks me what medication I am taking and I keep thinking “shouldn’t you know?” - I reckon I could tell them anything lol!

Greg

Hi greg777

I get on really well with my consultant and look forward to seeing him and having a chat about how things are going. During my treatment he was the one that had to have the hard conversations with me, but that also meant he got to know me really well and he understood how I functioned mentally. He was really supportive when I was discharging myself and hen when I was going off to Greece to sit on the beach, drink cold beer and eat ice cream when I was 3 months post transplant. He understood that I needed to get back to some sort of normality, saw the benefits my health got from doing it and put great plans in place to facilitate it. I met him for coffee outside clinic hours when I wanted a very frank conversation about life expectancy so that he didn’t have to be “ on the record’ and he was happy to do this for me.

i always assume that who ever I see needs a quick update of the meds I am taking as it saves them time looking it up so I get more time talking about what I want to.. 

Chest infection has gone and I had my live MMR jab today.. hopefully I won’t be feeling rough in a 7 to 10 days as next Friday I am out with the guys I go skiing with for a mid summer beer and curry night... I can probably guarantee most of will be feeling rough on the Saturday morning though.. 

Hi Paul,

daughter had MMR a bit early, she had the fever symptoms of the same sort of time scale and levels according to the incubation periods of each illness, a bit of a temp but not feeling too bad with rubella, followed a few days later with a high temp and not feeling quite right with measles, a lower temp plus some jaw-ache with the mumps which has the longest incubation period. All cleared in around a week. She did phone in as the measles temps were pretty high, but with very little else in the way of specific symptoms (other than a bit ‘off’) her team suggested she just took it easy and kept a watching brief. 

The booster had no problems. But she was in process of finding out whether her levels might need a further booster dose or not, not sure if she yet knows that. 

Hugs xxx

Hi Paul,

That’s really great you’ve got a good relationship with your consultant, I think it really helps. I get on with my consultant too, he’s a similar age with similar age kids, so I think that helps with the connection. The comment about him not knowing my medication was just a joke, I know they’ve got a really tough job keeping all the records up to date. The thing is the only medication I’ve ever taken is what he’s proscribed, so I’ve really nothing to tell him that he hasn’t told me. I wonder sometimes if I should tell him something unusual and see if he asks any questions!!!

I hope things go well with the MMR (hope you got a sticker or a lolly?). I must admit it made me feel pretty rough I think about a week after the injection - no idea which one of the letters it was, but I was laid up unable to get out of bed for a few days - but it soon passed and there’s every chance you’ll sail through it really easily as I think many don’t pick up any side effects.

And like you say, it’ll prepare you for the beer and curry hangover anyway!!

Greg

And daughter is back on them! I/V igs that is, they gave her a reduced dose yesterday to help her body get used to them again, so it seems her immune levels are down again. 

She gets a bad headache on the day but that’s all and it’s ok the next day.

hugs xxx

Well

I have managed the summer without too many issues.. A bit of a chesty cough which some meds sorted out a while ago. I am up to London tomorrow to have bloods done and then I will find out shortly thereafter if my IG counts are holding at a reasonable level or if I am back on the injections of Immunoglobulins for the autumn and winter.

Managed to get my MMR jabs done during August and September with no real issues so hopefully that is a good sign. Will update you when I know the counts.

So my results came back and  IgG level dropped from 5.7 in July  to 4.1 last week. So below the minimum range count of 6. 

I am back onto the subcut Immunoglobulins until the spring (once every fortnight). They will review bloods in January and then in the spring I will come off them again and see what has happened by the end of the summer 2020.

Although slightly disappointed I am going back on the IG's, my counts have only dropped to 4.1 whereas last year they dropped to just above 1 so a step in the right direction. Children don't normally get into a normal range until they are around 6 years old so bearing in mind I was immune system was suppressed with cyclosporine until May 2016  its still quite possible that the IGg levels will take a few more years to get to the correct level.

In the meantime hopefully it means another infection free Autumn and Winter so injecting myself for an hour every two weeks is a small price to pay!