I have been on Acalabrutinib for two weeks now along with prophylactics, one being Co trimoxazole , which I seemed to react to. I have now been offered Pentamidine, which I have read up on and don’t like the sound of plus it does not sound as if it protects as well.
Is anyone else on these drugs or have they been on them and how did they find them. Also how long are these drugs given as prophylactic ? Will ask this question at my next appointment as it went out of my head today as other things were going on and this came up at end of appointment. For now I would welcome any feed back.
Do tend to get a lot of conflicting information at some appointments. Was wondering if it is me as I get anxious now and have issue with trust as a result. Daughter comes with me and has reassured as she has noticed and at times we have questioned but it can be like a losing game so you just get on with it the best you can
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Sunshine2422
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Do you have any past issues with fungal lung infections or has your doctor tested your T-Cell counts finding a CD-4 count below 200?
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You may want to ask for a 2nd opinion on whether those prophylactic drugs are needed, this might be from a infectious disease specialists that works with HIV patients.
Thank you, as far as I am aware the antibiotics are only being given as a precaution and the last doctor I seen said if I react to alternative then won’t take anything . Think it it is what they give everyone. To date I have not had a fungal lung infection
The only information I have is IGH V status equivocal, subset IGH V3-21 *01, saying this subset is associated with more aggressive disease in historical series. No evidence of TP53 aberration or 11q deletion
Last bloods showed neutrophils in normal range 3.61 and consultant said risk of that infection probably low just precautionary med . White blood count high, it went from 38.2 to 275.0 in two weeks which they said they expected and they expect to stay high
See different consultants all gets confusing also get different opinions . Not been impressed so far . Bit like a sausage factory .Nothing been said about T-cell count .
I have been on Azithromycin since May. I feel it helps to an extent but if I do get sick, I need "normal" antibiotics and also something stronger. I think the dose I'm on is not strong enough for me to be honest with you so I will speak to my immunologist next time I see him but maybe it is and this is just gonna be my life (I'm on O+V).
In the UK a knowledgeable CLL specialist will prescribe in this order.
Aciclovir by itself for a week.
Acalabrutinib now added for a 48 hours
Allopurinol now added just for a month, but could be extended based upon blood counts.
Co-Trimoxazole now added, but just three pills a week, Monday Wednesday and Friday.
The logic behind this being that we are all different and people react to drugs differently.
Thus by taking the drugs slowly, and in order, the doctor/consultant will know if one of the drugs prescribed has some unpleasant side effects.
Obviously the Allopurinol is to help the kidneys flush the system
The Aciclovir is to prevent any shingles outbreak
The Co-Trimoxazole is a general preventative but mainly perhaps for any lung infections which are common with CLL. This drug is normally considered quite safe in these small amounts but still provides the required protection. It is a combination drug described as 80mg and 400mg.
Since you think the Co-Trimoxazole is the problem, which of the two drugs in these tablets is the problem.? Could you take one and not the other.?
Did you therefore start all these drugs at the same time.?
The consultant took me off Co Trim very clear it was that. The reaction happened when it was taken and was fine on days not taken. Now I am not taking I am fine. Was prescribed Co Trimoxazole 480 mg tablets to be taken twice a day on Monday Wednesday and Friday
These tablets only cover one type of pneumonia. Have been offered another type as stated in my post.
I am on Aciclovir 400mg three times a day not sure how long will be on but know I am on them for next three months.
Also taking Allopurinol for one month
I am also medication sensitive and have reacted to some things and not others
I can only comment that the dosages seem high compared to what is offered in the UK.
Aciclovir 400mg TWICE a day at 12 hour intervals
Co-Trimoxazole 400/80 mg ONCE a day and three times a week.
I could perhaps suggest trying to see if it is the Trimethoprim or the Sulfamethoxazole in the combination pill Co-Trimoxazole that is causing you problems..??
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