PCP Pneumonia Prophylaxis

[cmgarner]

I went to my first rheumatologist visit on November 21. Had been on 60 mg prednisone since October 15. She told me I now have essentially no working immune system, and am at high risk for Pneumocystis pneumonia (PCP). She started me on Bactrim (TMP/SMX) 3 times weekly as prophylaxis. I did a quick search on this forum and didn’t see any posts about this. Is anyone else on higher dose prednisone taking this? I did look online, and it makes sense to take the antibiotic. Just curious about others’ experience.

[Hidden]

Hi, I haven't heard of this before. Yes it's a high dose of pred but many people are on high doses of pred when they start Dmards which also suppress the immune system.

I have diabetes and take dmard and pred at 7mg (pmr only) but its never been suggested. Perhaps there is something specific to your medical history or I am 100% wrong. I apologise if its the latter🤔🌻

[cmgarner in reply to Hidden]

Nothing in my medical history to indicate high risk. Maybe she was thinking of this being the holiday season - lots of family dinners, parties, shopping. She also told me to stay home this season. “It’s just this one year” , she said. 😏

[Hidden]

Hi

Just checking, with the way the dates are written, is that you have been on 60mg since 15th October or October 2015? Which is how l read it the first time? I’ve had a bit of a hassle filled day!

Thanks

MrsN

[cmgarner in reply to Hidden]

October 15, 2019. Apologies for the confusion.

[Hidden in reply to cmgarner]

I take it your from the US & I’m from the U.K. 😉

PMRPRO will be along shortly & she’ll probably have more of a knowledge on the subject.

Take Care

MrsN

[SnazzyD]

Hello. Not heard of this other than one person a while back asking about this and we get many people on doses of 60+mg. Perhaps longer serving forumites will be able to remember others. I certainly wasn’t warned that my immune system had been wiped and didn’t have any problems. Be aware that Bactrim has its problems.

[PMRpro Ambassador]

This is a question that has arisen before and I checked with an experienced PMR/GCA research rheumy. She says it is often used in other forms of vasculitis but she has never come across it being used for GCA patients even on higher doses of pred, in the UK at least.

I do wonder if US rheumies are a bit cover my back in their approach to any patients who are immunosuppressed. It is a risk, but I have not heard anyone here say they have had PCP. It is common in patients with AIDS - but that is a rather different situation.

[Blearyeyed in reply to PMRpro]

The first time I heard anything about taking these preventative antibiotics was from a person that spoke to me on Private Message and they were also members from the US .

I think I might have another interesting thing to research !

[jinasc in reply to Blearyeyed]

Yes you have a new challenge...................OZ, NZ and the Europeans don't use it it seems just to be US and not everywhere.

How do I know, I asked this question yonks ago, long before this forum existed and PMRpro's leading researcher and two others all said the same. I had asked because the question arose on another forum guess what..........US. It did come up later on when LDN raised its head but I clean forgot about it all till I read this thread. I had not met PMRpro when it was first raised,,,,,,,,,,,,,but one year later I met her..............serendipity.

I am getting older and more forgetful.

Oh and I was told, constant antibiotics upset the balance between goodies and baddies, evidently we need some baddies as well as the goodies so the goodies can recognise when baddies and new baddies come along.

Now please remember, anyone reading this I am not and have never been a medical person and my explanation is my way of looking at things. About 50% of the time I just don't understand it all. I am just someone who got GCA 21 years after my Mother had it and I got out of my pram as there was very little research etc being done then as it is 97% women who suffer.

Now 13 years later................whoopee.

GCA only for 5 years and now coming 9th year in remission which starts on 1 an 2020.

[Chipola]

If you are offered this, then I would suggest you take it. My husband was on high dose Prednisolone and Methotrexate for GCA and I feel he would have benefited from having some support for his immune system.