Kenalog vs Omalizumab-pt2

[Lotti_321-]

Thank you everyone for your thoughts on my earlier post about these two medications. After discussing it at the appointment on Thursday we decided to retest my blood to see if my IGE has fallen below 700 ( as currently at 780) if it has then I can start the Omalizumab.

If it’s gone above 800 we’ll go with the Kenalog to bring it down and then move to Omalizumab.

If it’s stayed the same then whilst I am still in the honeymoon stage since my last course of steroids I am going to wait it out for as long as. To try and lose weight but with the reassurance that I can start the Kenalog at any point if my lungs flare.

I just wish things were more straightforward!!

[Hidden]

Hi Lotti! As I said in my previous reply to you I have never had any problems whatsoever with the Kenalog IM injection ~ I felt the benefit of it for around the 3 month mark & if it were my choice right now I would have much preferred to have yet another Kenalog injection than the dreaded 40mg daily of my nemesis, namely oral prednisolone 🥴. I have a real love/hate relationship with them as they have undoubtedly saved my life at very high doses over a prolonged period of time because they DO reduce inflammation in lungs and airways. However the side effects (most of which I’m currently experiencing) - chronic insomnia, bruising, weight gain thanks to increase in my appetite, nausea, headaches etc are a high price to pay. I had to have cataracts surgery done privately late last year as the Consultant ophthalmologist told my husband & I that they’re a particular type of very nasty cataracts called posterior sub capsular cataracts which are very different from the kind of cataracts elderly people get as these are very fast spreading & more extensive and powerful. On a scale of 0-4 with 4 being blindness he assessed me as 3.5 in both eyes. The consultant explained that these particular type of cataracts are directly caused by the over prescribing of long term high dose corticosteroids (amongst other things). I have also suffered two of the worst kind of heart attacks a person can have (charmingly called ‘the widow maker”) because the vast majority of people never survive them.

The medical jury is still out on whether my heart attacks were also caused by the long term high dose corticosteroids or by the vasculitis which is an inherent part of Churg Strauss/EGPA.

I have SREA (severe refractory eosinophilic asthma) which is why I’m almost always on steroids.(much more often on them than off).

My consultant wanted to give me a Kenalog 80mg injection the last time I saw her but as I’m currently undergoing extensive tests and investigations she did not want the Kenalog affecting the results as once it’s in there it’s in for approx 3 months, unlike oral prednisolone which can be stepped down etc.

Good luck with everything & please let me know how you get on Lotti 👌🌺

[Northern-soul]

Hi Lotti,

I personally would try and avoid kenalog at all costs as it’s greatly affected my health for the worst. My very first injection of this drug saw me very poorly after around 10 days following that first injection I developed diabetic ketoacidosis (I was not a diabetic). I was on an insulin pump for 3 days, it had started to affect my heart too. I was in hospital for 10 days and discharged home on 4 injections of insulin daily and had very unstable blood sugars for a few months. At the time of the first kenalog I was taking around 30mg prednisolone also.

My respiratory consultant persuaded me to continue with the kenalog which I reluctantly agreed to. Strangely my need for insulin came down and my blood sugars become normal and the diabetes subsided after 18months. I think I probably had around 4-5 injections in all. After discontinuing kenalog I developed bilateral cataracts an required surgery aged 51. My muscles were also affected by the steroids the myopathy caused extreme weakness in my legs and arms which still affects me today (6 years later), to a lesser extent. I also developed Adrenal insufficiency again due to the steroids and now have to take prednisolone for life and carry an hydrocortisone injection kit in case I develop an Adrenal crisis as this can be life threatening. It’s all very scary stuff.

I was very poorly at the time and just wanted to try anything that may help but if I had to make the decision again I would definitely not have it as the side effects were too great and long lasting and have greatly affected my quality of life.

Good luck in your treatment xx