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Autoimmune Neutropenia

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katie.k.
katie.k.

Does anyone have any personal experience of autoimmune neutropenia.?

My daughter (25) was diagnosed four years ago and the whole subject seems so vague. She sees a haematologist every six months who monitors her and asks how she feels - other than this no help or treatment is offered. She gets multiple mouth ulcers on a regular basis and often feels washed out and tired. She also suffers from IBS. Nobody seems sure how this will affect her in later life. Bone marrows punctures have been performed to rule out any 'nasties' but we don't seem to get any answers.

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  • lupinb
    lupinb katie.k.

    Edited

    Hello Katie, I was diagnosed with autoimmune neutropenia about 20 years ago. I agree there isn't much information out there but I had a very good haematologist who answered many questions and was supportive. The tiredness and endless mouth ulcers seem standard for AIN and while your daughter is relatively ok there is no other treatment offered. If the severity/frequency of infections increases there are generally two treatment routes - steroids to reduce the immune response or G-CSF to increase the production of neutrophils in the bone marrow. I was on the latter for over 10 years. It helped with infections but like most medications has some side effects of it's own.

    If you have any specific questions I'll try my best to answer them.

    Hope your daughter is keeping well.

  • Everhopeful1
    Everhopeful1 katie.k.

    Posted

    Hi Katie and Lupinb, I can only agree with what Lupinb has said below and add that having been diagnosed at about the same age as your daughter and had this now for about 30 years, please try not to worry and be positive - the consultant will be very supportive and a good source of knowledge for you both.  If they have established it as autoimmune, they may look at investigating if it is cyclical also.  There is still no real treatment either way except for GCSF, but her consultant may prescribe antivirals and antibiotics for emergency use, so that she may use them sensibly when she knows she is in a low phase, keeping good hygiene may also help in avoiding infections in lower periods of immunity.  I personally try to avoid using GCSF if possible but sometimes you have to. 

    This is the first discussion I have come across in the UK.  I think this is because there are very few cases of us-patients with ongoing neutropenia. I was 1 of 5 apparently in the Southeast 2 years ago.  I would probably advise her to avoid the information out there (lots from USA etc-bigger population so more cases I guess) as it makes pretty scarey reading and sometimes and not always in relation to autoimmune cases. I am following this now so if you need support please ask, Lupunb - it's good to know that there is someone else out there. Take care. 

    • patientdave
      patientdave Everhopeful1

      Posted

      Hi Everhopeful 1.

      Just thought I'd respond to your email to Katie of long ago and let you know there are a few of us neutropenics about. Like you I have had the problem for around 20 years. I developed Autoimmune thrombocytopenia at the same time. It's a long story but i'll cut it short by saying I have been doing well for past 2 - 3 years. Neuts on last count 1.2. If it drops lower or I get a cold I have a shot of gcsf. I seldom see the consultant these days.

      I live in Leicestershire these days but lived in Wilts/Bath area when I suddenly developed the problems.

      Hope you are still keeping OK. If can help with any quiries let me know.

      Regards. Dave

    • Everhopeful1
      Everhopeful1 patientdave

      Posted

      Hi Dave and thank you for your reply. I am under Southampton so we may have been fairly close by in the past. Glad to hear you are doing better now and keeping well. Like wise- if you need a chat, let me know. Take care!
  • margaret12424
    margaret12424 katie.k.

    Posted

    Has your Haematologist considered LGLL? This is a rare but generally benign "leukaemia". There is info about it on facebook which explains more about it. Or look up Dr Thomas Loughran University of Virginia who isolated this disease. Neutropenia is often the trigger for a bone marrow biopsy which can led to diagnosis. Many people do not need treatment (Wait and waych) - others need GCSF injections or low dose Mtx to boost their Neutrophil count. Hope this helps
    • Txannie
      Txannie margaret12424

      Posted

      My husband was just diagnosed with LGLL and I am terrified.  They told us at first that it was neutropenia caused by Methotextrate.  Now they have changed it and gave us a option of a chemo drug, but stressed that we didn't need to be in a hurry.  Is this a cancer of the blood or is it benign.  I can't find much on it. Thank you for any input.

  • patientdave
    patientdave katie.k.

    Posted

    Hi Katie

    It's a long time since you posted on here so I'm hoping your daughter is much better. As you know neutropenia is rare so I have seldom spoken to anyone before. I can't really tell you any more than others have already discussed about reatments.

    I've had it for 20 years though it has improved lots since then. I occasionally get a low count and I have a shot of gcsf to put it up a bit.

    I also have autoimmune thrombocitopenia. The two conditions run side by side. I have a ante rejection drug for that and it seems to help the neutrophils too.

    It would be good to hear fom you.

    Dave

  • becky50430
    becky50430 katie.k.

    Posted

    I also have been diagnosed with neutrapenia for about 16 years now. It's good to talk to someone who knows what this is. I wanted to know if other patients have ever been rejected for life insurance due to this blood disorder. It just happened to me. I don't often think of this disorder since I am never sick or feel tired or anything so it hit me like a tune of bricks when I received a rejection letter. My hematologist calls it a disorder not a disease. Wondering!

  • patientdave
    patientdave katie.k.

    Posted

    Hi Beck & Katie

    I don't have much of a problem now neutropenia although my count is always a bit below Norma. I was 1.2 last week which makes me slightly volnourable to infections. When it drops well below 1.oo I can self inject GCSF. Do you have this or perhaps your count is reasonable. I generally run on a below normal count but don't seem to have more infections than other with normal counts. If, like your daughter I was having mouth ulcers and feeling ill I would be asking about GCSF. This works by stimulating the cells in bone marrow to produce more neutrophils. I think we have to push for this as not all docs want to prescribe it. Regards Dave.

    • becky50430
      becky50430 patientdave

      Posted

      Hi Dave. My counts never goes above .8 and mostly stay around .4. This is very low compared to yours and Kates. However, I never get sick ,YET. My hematologist doesn't seem very worried about this. He as many others have said "that's just how my body functions". They just recommend staying away from sick people and washing my hands. But now I get rejected for life Insurance because of this.

  • sarah62721
    sarah62721 katie.k.

    Posted

    Hi. I am 34 and was diagnosed with autoimmune neutropenia at the age of 26. My neutrophil counts are always low, as low as 0.3 at times. I don't seem to get infectiona any more than the average person but I do often worry about the implications of it and what else could be going on. I suffer from really bad fatigue and IBS like symptoms. Its good to find other people with the same condition I haven't managed to find anything chats relating to adult autoimmune neutropenia and all the literature scares me :-(

    • becky50430
      becky50430 sarah62721

      Posted

      Hi Sarah, Try to stay positive. I have had this disorder for about 16 that I know of. I found out when a nurse practitioner say me for a severe case of the flu. My counts had never been above .8 until three months ago. I had been as low as .2  when they gave me a shot of Nupregin. It helped and pushed my count up a little. Havnt had one sice. This was about 3 years ago. As of 3 months ago I was up to 1.5. I get dehydrated easily and have gotten canker sores in the mouth quite often but other than that I'm fairly health for a 66 year old. My hemotologist has no real answers to any of this! If this increase happened to me it may happen to the rest of patients like us. What worries me is issues with insurance. I can't get life insurance. 

    • sarah62721
      sarah62721 becky50430

      Posted

      Thanks Becky. Mine was discovered incidentally through some blood tests. My hematologist was baffled at first. He thinks it is likely the sign of a wider systemic autoimmune disease although at present my liver / kidney function etc are ok. Can I ask if anyone has regular follow-up and if yes do you have any regular blood tests. My hematologist has more or less told me just to go back if I have any problems. Best wishes Sarah
    • becky50430
      becky50430 sarah62721

      Posted

      Yes, I have had check-ups every 6 months and blood work with every visit since I found out. This time around, since my neutrophils were up to 1.5  I will have a check up in a year. Yea! My Dr has never said it's a sign of a wider systemic autoimmune disease. That's  puzzling. He always says not to worry since I really never get sick. I think it is important to get checked along with blood work to see where you stand each time. I have always fluctuated and knowing where I stand has been important to both my Dr and me.

    • sarah62721
      sarah62721 becky50430

      Posted

      My counts fluctuate quite a lot, the only time have ever been normal is when I gave birth to my son and apparently that is because my body was reacting to the stress of giving birth. I am seeing a different hematologist in November as my GP thinks I should be followed up every now and again. Hope to keep in touch with you on here as I don't know anyone else with autoimmune neutropenia!

    • ramona76143
      ramona76143 sarah62721

      Posted

      Hi Sarah. I'd really like to share views on the cures for autoimmune neutropenia. I'm 30 and I have this disease. I have generally really low neutrophil counts, bad mouth sores and sometimes fatigue. How about you?

    • sarah62721
      sarah62721 ramona76143

      Posted

      Hi Ramona, as far as I am aware there is no cure for it. Just g csf injections if it starts to cause symptoms. I don't seem to get the mouth ulcers but suffered terribly with fatigue. Sometimes muscle/bone pain and just generally feeling unwell.

    • ramona76143
      ramona76143 sarah62721

      Posted

      Hi and thanks for the answer. My hematologist is reluctant to GCSF as he sais it gives bone pain and is expensive and one can't take it lifelong. I don't know...I only took it once when I had fever and low neutrophil count. I'm afraid of being prescribed cortison or cyclosporine

    • sarah62721
      sarah62721 ramona76143

      Posted

      My counts have been as low as 0.3 however thank fully I've never had to have any treatment yet. Does anyone have any other autoimmune conditions? My younger brother has also had a rare autoimmune disease which gas nearly wiped out his kidneys, maybe something in the family although difficult to prove

    • ramona76143
      ramona76143 sarah62721

      Posted

      Hi. I was born from twins but my little baby born brother only lived 19 days. Don't know why, though. I'm happy that you don't have to take treatment as it has collateral effects.

    • ramona76143
      ramona76143 sarah62721

      Posted

      Thanks. However, that occurred almost 31 years ago with my brother. Hope that they find, even by chance, some other cure for neutropenia. How does it work for you, do you have to pay generally for Gcsf (if you needed it, I know you fortunately don't)? I'm not English and I live in Italy, so I was just wondering.

    • sarah62721
      sarah62721 ramona76143

      Posted

      If we needed G csf in the UK we wouldn't pay for it, we are quite lucky to have the NHS

    • ramona76143
      ramona76143 sarah62721

      Posted

      I understand. Well, that's ok. I live in Italy and was a little worried about the cure I'll probably have to take. Thanks for the answer

    • mona65673
      mona65673 sarah62721

      Posted

      sarah62721,

      I'm the same ramona76143. I've changed username (I couldn't register with my old forgotten password & account). I recently discovered I have AA (inflamatory secondary amyloidosis). What disease does your brother have? Cause mine (immune neutropenia and maybe Behcet, not sure) it's giving me renal problems (proteinuria)which I'm handling with cortisone.

      Best wishes,

      Ramona

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