Not posted in a while but back at work after being off for 6 months with the above blood disorder and getting Neutropenic Sepsis. Neutrophils as low as 0.2 in recent months. Had neupogen injections but they made me so ill, even gave me multiple ulcers in both eyes, although the haematologist said that is not a side effect, but i know, within a week of each injection i got the eye ulcers. They cant find a cause for the neutropenia except that it may be due to the R.A. ive had for the last 20+ years. Had a bone marrow biopsy which did not reveal much except to show immature white blood cells. Steroids did nothing to help either.
My R.A. has not been much of a problem in recent months, but the low white blood cells are a big problem. Terrified of getting an infection in case it turns to sepsis again and in case i lose my job for being off again.
I had a mirena coil fitted 10 years ago, supposed to come out in 5 years but doctor said it could stay in. They cant get it out now, its stuck! May have to have surgery to remove it but they dont know if they should do that because of my low white cells and also thrombocytopenia which means i bleed easily. I wondered if the coil had anything to do with the low neutrophils but the docs say no documentation to say this could be a cause. So now i am waiting for my gynaecologist to speak to my haematologist and rheumatologist to decide if i have the coil removed or not.
Feeling very disheartened, the neutropenia has been going on for over 12 months now and they cant help me because they dont really know why i have it, and I feel constantly tired, lots of infections, mouth ulcers and sores etc etc and now this trouble with the coil.
Just needed a rant with people who know only too well how frustrating these illnesses can be, especially when you cant get a proper diagnosis or treatment. Just want to keep up at work and try to live a "normal" as possible life without the constant significant threat of severe infection. Not a lot to ask.
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anneileen
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Rant away, I have been blessed with feltys and my neutrophils have been out of control for years, know too well how tiring just generslly feeling rough is and average a couple of hospital stays a year with sepsis. The hardest part for me is the 'invisible' nature of the condition so people assume ur lazy or malingering. On here is a good place to vent, most get it and sometimes thats the boost you need. Good luck hope it works itself out okay x
Thanks for this, it is a relief to hear from someone who knows about this awful condition. No one in my circle of family and friends has ever heard of Neutropenia. Even my own GP had to research it to try and help me. My work place occupational health people say i should not be working in a call centre environment, but i cant lock myself away in case of infection. I cant plan outings or anything anymore because i never know if i will be well enough. Thanks again for your good wishes. xx
Feltys is a tricky blighter, and not readily identifiable by blood tests unfortunately. More a kind of rule out kinda deal than a rule in, I am the only feltys patient my rheumy and haematologist have and they have faffed for years trying to get neutrophils under control. I currently have been on steroidsto keep a base level of .4 or so, on top of hydroxy and rituximab.. hopefully they will sort you out sooner rather than later, good look, feel well x
that is really just so dreadful and well done to you to even get back to work now. What an awful and frustrating year you have had. I can not offer anything but sympathy and I hope they find out the source of the neutropenia and deal with it. Wouldn't it be great if the three ologists just sat down and made the decision as soon as possible so you know where you are at.
Thanks very much for taking time to reply, i really appreciate it. I am hoping the ologists get together and sort me out once and for all. Thanks again. Hope you are ok. xx
All i can add to this is you have been through a lot and i salute you for fighting the best way you can. Your one brave lady and i am sending you some sylvi hugs.xxx
aw Thankyou sylvi, i love hugs and now im going to have a little weep, its such a relief the speak to people who really truly understand. xx
Ditto to what others here have said. I haven't suffered like this at all but i did have two Mirena coils over 12 years. They were very easy to remove but incredibly difficult to fit - second one gave me problems for a few years with terrible womb pain, weird bleeds etc - I think the gynae did something wrong when he inserted it. After this experience I can see why you are thinking the coil might be the culprit and want shot of it. How awful for you.
When I read your blog I remembered my husband had a short term job working with challenging youngsters in community social services. It was far from ideal in some ways but he was always impressed when all those involved with a client, including the family, would attend review meetings and discuss things for as long as it took to get a good plan to try and meet the client's needs. That's what ologists should be doing for you. Hope they do soon and things somehow improve. I only have quite well controlled RA but still find all the extras such as Sjogrens and Raynauds and OA are getting me down - don't know how you cope but I think you are very brave and rant whenever you like. Hugs.Tilda x
Thanks Tilda, im glad you think i am brave, i sometimes think am i just being mardy and dont feel brave at all, especially when i see what you and others have to contend with. Life has dealt some difficult hands to play and each day is a challenge for many. Best wishes and hugs Linda xx (Anne Eileen was my mothers name, she was riddled with rheumatoid arthritis from a very young age, she died 30 years ago and i still miss her every day). xx
You have got the wrong idea about me being worse off than yourself - I may have other autoimmune stuff but its relatively mild compared to what you have been going through. That's so sad about your mum. My mum died suddenly of heart failure at age 73 and so did my dad (same age) and I too miss them terribly.
But my dad lost his mum to septicaemia when he was only ten. She pricked herself with a darning or embroidery needle only a few years before Fleming invented penicillin. The story my dad told was that they lived nearby to the great man and his dad took my dad to see him along to plead they try the new drug for her but Flemming said no he was so sorry but couldn't risk it at this stage. Its amazing what a huge difference some of the drugs we take now have made to life expectancy and disease isn't it? Tilda x
Thanks for sharing, that is very interesting, how sad that they could not have saved your dads mum. Medicine has come a long way but sometimes it is scary how much is still not known. Every question I ask the answer is, we dont know, we cant say, maybe, and on and on. My dear brother dropped dead a few months ago with a brain haemorrhage, he was only 60. There are no answers, but he kept breathing long enough so that his organs could save others. Linda x
Dear Anne eileen so sorry to hear of your recent and ongoing problems. is that a medical diagnosis "stuck",, can it be removed under local anaesthetic under ultra sound guidance?.I was offerered 3rd one this way using ultrasound to establish positioning, but after my bad experience with 2nd one I gave it up the idea of number 3
Hi Summer, the gynaecologist said it would have to be removed surgically with general anaesthetic (why are all medical words so awful to spell?) She did an internal ultrasound scan so knows where it is but looks like it may be embedded in my uterus. So i am waiting for them to decide my fate but i really want the thing out now.
10 years ago I was diagnosed with severe neutropenia with a WBC sometimes as low as 0.1. I have been struggling through this unknown illness and have been hospitalized quite a few times. When I need to be hospitalized it is always an issue as I need to be kept in isolation and given profilaxis antibiotics to try keep me healthy. Antibiotics as you know has severe side effects, especially in your gut and intestines. I have been from specialist to specialist, naturopath to natural healers. I have changed my diet and am now almost fully vegetarian and focus on a lot of plant based meals. My neutropenia however persists. Shortly before my diagnosis I had the mirena put in because of heavy bleading and painful periods. I had it removed months after it was put in as it got lodged in my cervix. I am now wondering if it was not the mirena that kicked off my severe neutropenia. It would be interesting to find woman with neutropenia that have had mirenas. I might be grasping at straws but I am really wanting to find why this has happened to me. I have always led a healthy, active lifestyle but this still happened to me and I want to find out why.
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