I call them my three muggers that follow me around ruining my life. I should be able to enjoy the fact that my disease is undetectable (love that last word so I often write it out in full rather than the medic speak MRDU!) Far from being high my lymphocyte count is too low due to the after effects of treatment.

But the muggers ruin my life.

1. Fatigue I have spoken about before so I won’t mention it here except to say it still sucks though it’s better than it was at my worst. And when I’m on prednisolone (steroid) for mugger three like I am right now then this also gets a LOT better. So much so I am currently desperate to stay on steroid even tho I know there are serious long term side effect risks and it presumably makes mugger two worse.

2. Infections. Again we have spoken about this before here. But suffice it to say my last infection, which may well have been partly bacterial, but definitely included a rhinovirus I somehow caught despite being on very strict lockdown, really sucked. It made me feel very sick indeed and led to two nights in my London penthouse suite otherwise known as UCLH! (A hosptial in case you didn’t realise!)

3. Inflammation. Now here’s the real kicker. I have as some terrible issues with my allergies that are crescendoing and getting worse and worse. I have been told this is probably due at least in part to my steadily falling iGG antibody levels.

I’m wondering who else has had severe issues with asthma, rhinitis (hay fever Symotoms that in my case go on all year) and severely itchy skin / urticaria?

In addition I have a small area of a known auto immune disease and sometimes wonder whether the odd aches and pains I get off steroids but which recur on them might be a suggestion I might have others (I have an isolated low TSH with normal T4 also raising an eyebrow or two)

At the moment I’m on

Doctors have talked about the following options that they are considering among others

• Further meds for asthma itself.
• Use of a monoclonal antibody to knock out my IgE antibodies which make allergies worse (given I have almost no useful antibodies do I want to lose these few?)
• Possibility of IVIG not just for the infections but as a possible treatment of the inflammation.

So here’s my question.

Have any of you had similar problems and successfully got them under control?

And in particular has anyone had a case history of clearly responding to IVIG not just for infections but for allergies too?

IVIG is going to be hard to obtain for me not least because of the pandemic but also because though my IGG is dropping, and as it drops my symptoms worsen, and I definitely get regular infections, my count has yet to reach the cut off usually used for the criteria to start it. So if we do decide to try and make a special case for me would be lovely to have a couple of successful stories to back up the idea this might actually improve my quality of life.

For now I must say the prednisolone return is like the return of a dear friend as it is helping a lot with ALL my symptoms including some others I’ve not mentioned here. I can mangae to walk up to 30 mins on it almost every day. I found during the three weeks I was off it again I struggled to even manage ten minutes on just some days each week. And my thinking is much clearer, energy levels generally stronger and writing is easier. (Beware I may start writing even more….!)

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History of use of IVIG for allergies