Further problems with allergy - what to do?

[Provence]

In February I wrote a post about an allergy crisis that I had just had, and many of you responded very kindly with good feedback and information. The situation has however developed and I am now feeling more at a loss than before and would certainly appreciate further comments and feedback.

I will start with a brief recap and then continue with the story until today.

Early February I had an allergy attack with swollen face and tongue and sinuses and with streaming nose and eyes and a strong headache just behind the forehead. My GP diagnosed that it was an allergy and both he and I thought it could be due to the nuts I had eaten. He prescribed cortisone and antihistamine.

The cortisone gradually brought the inflammation down and after about 8 days I no longer woke up in the morning with a red and hot face . Until then I would wake up like that and then after breakfast would take the cortisone and it would disappear. But the problem was that even while I was not having inflammation during the day, I felt terrible. It would start in the morning some time after breakfast and last all day until about 6 o'clock. I had brain fog, could not focus my mind, felt weak and fatigued, and was basically unable to function until about 6 in the evening.

I saw my GP again and he prescribed a blood test to check for various things, including whether there was an allergic reaction, and he also told me to talk to the doctor in charge of the day hospital where I have my monthly IVIG infusion. I did talk to her and she quickly diagnosed that on top of the initial allergic reaction to something I ate, I also had an intolerance of the cortisone. I had at that moment already stopped with the cortisone and so I thought that that would be the end of it.

But it was not the end! I continued to feel the same during the day, although the number of hours diminished. For the next few weeks I had a regular pattern of beginning to feel bad by 11 in the morning and this continuing until about 1.30 - 2 in the afternoon. During that period I would rest with my eyes closed since I was hardly able to do anything else. So I went back to my GP. He now told me that he no longer thought it was an allergy since the blood test did not show evidence of an allergy. He said that instead he thought it was the Ibrutinib, which I take every morning after breakfast, which was the cause of it all. I asked about seeing an allergist and he was not in favour and said I should see my haematologist instead. I already had an appointment with my haematologist booked for March 27 so I thought that I would discuss it then.

But I also thought that to be sure whether it is the Ibrutinib I would stop taking it for a few days and see if it made a difference. I knew that would be okay with my haematologist since it has happened before and because my CLL is well under control. I knew it would be very difficult to talk to him and that it would be better to try and get hold of him once I had more facts.

I stopped with the Ibrutinib last week Thursday and by the weekend was feeling much much better. The period of feeling unwell had completely gone, the only thing left was that I was feeling quite tired. It had been my intention to go back on the Ibrutinib after a few days but I then had, by chance, a conversation with the pharmacist who provides me with the Ibrutinib. He was very strongly of the opinion that I should be in hospital when I go back onto the Ibrutinib. He did think it was possible that the Ibrutinib was behind all the problems I had been having.

This week I have been trying to get hold of my haematologist to discuss all this with him. He has been impossible to get hold of. In the past I would leave a message with his secretary and he would phone me personally if it was an urgent issue. No more! He is too busy! Finally today I got a message from his secretary that he thinks it is unlikely that the Ibrutinib is causing the allergies and that I should go and see an allergist. And not to worry about not taking the Ibrutinib, it could wait until I see him on the 27th. He had not talked to me so did not know any of the details of what has happened, so I am feeling rather annoyed about this

I am also feeling quite disoriented by all these contradictory responses from different doctors. I don't suppose there is much to do until I see my haematologist on the 27th, but am still wondering whether I should go back on the Ibrutinib, if only to see if the symptoms return.

My apologies for this long story, but I do not know how to convey the complexity of it all without giving the details. Any comments would be appreciated.

[Provence]

Thank you very much and I am following your advice and have contacted the pharmacist. I talked very briefly with him and he said he would phone later. He has not done so yet, but I trust that he will. He has always been easy to have a conversation with.