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Hello,

Following my Stem Cell Transplant in June 2012 I was on a Monthly dose of Pentamidine, this was administered by nebuliser and meant I had to travel to Southampton (I live on Isle of Wight) to receive this. Two months ago I was taken off this and put on to Co-Trimoxazole 480mg twice a day on Mondays, Wednesdays and Fridays. The side effects I have received from this drug have been horrendous.........

When i was initially put onto it I had a cold, and had recently received a dose of Cytaribine in my Central Nervous System as part of my treatment, i put the side effects down to the combination of these 3 and with the blessing of my consultant came off the Co-Trimoxazole and received one further dose of pentamidine by Nebuliser.

I started the Co-Trimoxazole again at the beginning of this month and i have the same side effects again, I am extremely tired, so much so that all I want to do is sleep, sleep and sleep! I have become very nauseous, especially when I have anything that has any dairy in it. I would go as far as saying that the side effects have been the worst I have had throughout any of the treatment I have received for my AML and Stem Cell Transplant.

One other thing, having read about this drug on the NHS Choices website, one of the rare side effects is "Possible damage to blood and Bone Marrow", this not something you want to read having recently had a Stem Cell Transplant.

I have mentioned my concerns to my Consultants at my last clinic appointment and they just seemed to brush them under the carpet as though they were nothing to worry about.

Has anyone else had any side effects from this drug?

I want to get as much detail and information ready for my next clinic appointment on 21st March.

I would appreciate any thoughts/advice on this.

Hi Brian,
At Southampton they put me on Septrin 3 times a week after they stopped the pentamidine, ( which I hated as it always gave me the shakes. ) I think this is the same as you are on. I didn't get any side effects. I know what you mean about looking at possible side effects, but so many of the things you have to take say to have regular blood tests as it could cause problems. A bit like a side effect of anti-depressants is depression! You have to trust the consultants, they have so much experience and don't want anything to go pear shaped. However if you feel so bad with it, I would ask if there is anything else you can take, or if it's something else causing it. Good luck.
Lucy

Dear Brian

As Lucy says, If this drug is making you feel so unwell, you really should flag it up to your consultant - especially your concerns about the effect on the blood. Some people are more sensitive to certain drugs and tolerate others well (e.g. Lucy found Pentamidine to have a bad effect on her but seemed OK with Septrin (co-Trimoxazole)) and it may be possible to find an alternative treatment which does not give the same side effects. This drug is actually a combination of 2 antibiotics which makes the likelihood of side effects greater than a single drug - you could be affected by one or both. If it is being used to prevent infections, there may be other possibilities such an "ordinary" single antibiotic.

http://www.patient.co.uk is the NHS site specifically for patients and has lots of information - including patient experiences. If you put the drug name into the search box on that site, you can access them. I have just had a look and nausea and tiredness seem to feature heavily so you are not the only one!

http://www.patient.co.uk/medicine/Co-trimoxazole.htm

I hope you will soon be able to resolve this issue satisfactorily. It seems really rough that you should feel so bad having "gone through the worst" so to speak!

Best wishes

Chris

Have been to clinic today, have been take off the Septrin (Co-trimoxazole) and put onto Dapsone which I start tomorrow!

But interestingly, what has more than likely caused all of my latest problem is an Underactive Thyroid, which it appears is not uncommon in post BMT patients.

Nice to get a satisfactory result!!!

Interesting about the underactive thyroid, that's exactly what happened to me post BMT and I'm now on quite a high dose of thyroxin. I'm glad they changed the septrin for you, hopefully you will feel much better.
Lucy

Still feeling extremely tired and generally unwell. I suppose it will take a while for the Levothyroxine to kick in........

On a good note don't seem to have any side effects from the drug I've been given to replace the Septrin!

They put Ken on the septrin but his platelets started to fall again so he is back on the nebuliser for now. He didn't seem to have any other side effects though.