Hi
Had anyone ever had Haemophilus Influenzae? Been unwell for months with what everyone thought was a chest infection, couldn't get rid of it with 3 lots of antibiotics. Sputum test showed Haemophilus Influenzae, got different antibiotics now and been on them for 3 days. I made the mistake of googling it as I've never heard of it and it looks scary.
I am on rituximab, I had my last infusion 3 months ago and had this ever since. Immune system must be zero!
I hope you feel much better soon now that you are on the correct treatment.
Phew: glad you've got this figured out...am VVVVVV glad👍👍👍👍
I think you've told me you're immunologlobulin levels have been tested & are not below range? Had you ever been vaccinated against haemophilus?
My BIG risk factor is pneumococcus...my hypogammaglobulinaemia (G, A, M) prevents me have any pneumococcus antibodies...even in response to both types of pneumococcus vaccine...BUT somehow I have been able to produce hemophilus antibodies, having had none before recent vaccination by immunology.
Whatever, am seeing immunology at 3-6 monthly intervals & the clinic has me permanently on daily antibiotics due to bring at such high risk of infection (regardless of my treatment with immunosuppressants for lupus). So, am just wondering if you're having full immunologic blood tests. As I understand, these are the 2 biggest risks: pneumococcus & haemophilus vulnerability
Hope someone with haemophilus risk issues replies
Take care...please keep us posted
🍀🍀🍀🍀 coco
Hi barnclown
No, I haven't been vaccinated, I'm 41 and that vaccination wasn't around when I was a baby. Is it too late to have it now i wonder!
Gosh it's scary stuff 😢 Glad they are keeping an eye on you regularly.
I haven't had those levels tested I don't think. Maybe time to.
Thank you for your reply
Xxx
No...in my experience it's not too late: as far as I know I'd not had either the pneumococcus nor the haemophilus vaccinations...I was only given them last year because rheumatology referred me to immunology due to my sinister bone marrow blood test results. In the course of investigations, immunology tends to use tests for pneumococcus & haemophilus antibodies + vaccination response as a diagnostic tool...as I was severely deficient in both types of antibody, immunology tried vaccination. first my response to the 2 pneumococcus vaccine was tested: I was unable to make antibodies to both vaccines. Then several months later when I was 63, they tried the haemophilus vaccine & I respond, phew.
Yes, I'm monitored at immunology clinic every 3-6 months. And yes this is scary! But I am reassured by the care I'm getting from I immunology...and by the respect all my other multisystem consultants are giving re my vulnerability to infection. Never once have my lupus meds been blamed, or withdrawal of treatment been suggested...this is because my hypogammaglobulinaemia predates my treatment with immunosuppressants
I wonder what blood tests would reveal about the state of your haemophilus antibodies....and what this current infection signifies.
Take care dear...please let us know how things are going
🍀😘🍀😘🍀
Hi Joanne
So sorry to read your news, have no experience of it but just wanted to say I hope your better soon now your on the right antibiotics!. Take care. X
Hey Jo, how are you feeling? Have you noticed any improvement??
Hi, thank you for asking. Still lousy but a little better I think. Got the gp again today as I'm not sure the antibiotics are working as well as they should after 5 days. Might need a different one.
Jo
Well it sounds like you have had a really rough time for quite an extended period of time. I hope the GP is helpful. Keep us all updated. Wishing you well. 🌼
Thank you so much. That's really kind. It's been a long haul 😢
Jo x
Just curious (and nosey) but are you still on steroids or did you manage to come off them? I remember you were tapering in a previous post.
Had to go back up again, on 8mg at the moment tapering down 😢 Can't see ever getting off them! Xx
Hey Joanne, reading your post was basically like reading my life this year! I've had relentless Haemophilus all year long in spite of several rounds of antibiotics and two hospital admissions. So now I'm on track to have a PICC line put in for me to self administer the antibiotics... not looking forward to that... but it's the same story of Rituximab long term = upper respiratory chest infections 😢 Thinking of you xxx
Oh no. You poor thing 😢 That's horrible. Mine took ages to go, in total I think it ended up being 6 lots of antibiotics, was horrendous. I really hope having that put in and having the antibiotics through it works to get rid of it.
How many rituximab have you had. It was the last of my cause, the sixth one that nearly killed me off!
Hang in there, it will go. Sending you big hugs.
I still get days where I being up mucas and my chest has not been the same since, got to have further tests on my lungs now.
Jo x
Thanks for the hugs Jo, right back at you xx
Actually I've been on Ritux since 2009 so I've long stopped counting how many rounds I've had!! Far too many probably. So I've decided to trial having less - having half the dose.
Oh well - we've got to keep moving forward no matter what. Gotta buck up and face Friday when they put the line in 😬
Love xx
Hi.
How did you get on having picc line put in? Have the antibiotics helped you?
I have just got another bout of it 😩 Never ending.
I haven't had anymore rituximab, I had a course of 6 and we are now just seeing how I go.
Hope you are feeling better and being able to administer your antibiotics is helping.
Jo x
apparently it is not too late to have the haemophilus vaccination, I had it at age 41, my thoracic consultant believed it would help to be vaccinated, I have had haemophilus colonized it my lungs for 12 years, I have had all sorts of medication, my haemophilus has not been typed I asked and I was told it would not make any difference being typed. I have also had sarcoidosis, my chest remains very week and I catch weird and wonderful gram positive bacterial infections. This has left me with a less than perfect immune system, I will be going to see a Imunologist in a weeks time, I am hoping they will come on with some answers and some way to help me combat all of the infections I have been very ill with a flare-up of my chest condition since March 10 his year and its not getting any better. Its not just my chest I have problems with, I also have Diabetes, Low thyroid, Fibromyalgia, Osteoarthritis Anemia Severe Asthma and several other issues. Most days this leaves me exhausted and not well. For my chest I see a respiratory Physio every week for clearance I have very similar symptoms to Cystic fibrosis, so am treatment like patients with that condition, I have a lot of the same meds. My chest as I said has been ongoing now for 10 months, so its getting difficult to keep my chin up, and keep a smile on my face, I do try but it is getting the better of me. thanks for reading my dripping!
I’m deaf! 
All very new to me!
I am curious about a Lupus symptom
Constant uti's
Irritated bladder and constant need to wee
