lupus , neutropenia , anaemiea and hypothyroidisim - LUPUS UK

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lupus , neutropenia , anaemiea and hypothyroidisim

nora123456
nora123456
β€’11 Replies

hello, everyone, I am new for all of this and I will appreciate your help. my story had begun with my third miscarriage in the last April where I was very ill and I requested to be transferred to hematology for my severe anemia [WWC 1,62, neut 0,79, plt277 Hb 92, MCV.] .i had an iron infusion a month ago and my ferritin has gone up from 18 to 673 but I remained anaemic with haemoglobin of 102 and MCV of 77.6, neutrophil count at 0.88 with normal platelets . free T4 11.1, TSH 7.57 LDH 158 I am not in medication for my autoimmune thyroid disorder yet waiting for endocrinology appointment next week.

so she checked my ANA which came positive at 1: 1280, dsDNA was positive as well which confirms lupus. I had my first appointment with rheumatology last Friday and prescribed me prednisone and hydroxychloroquine. they did not explain anything for me they told me that I need to take them because of my low white blood cell which means having a lupus overlap. I suffered all my life from anemia and I always used to have low white blood cells [my GP did not really care or show any concerns regarding it ]. I do not have any other symptoms other than neutropenia and anemia. what is the role of hydroxychloroquine in all of this especially its side effects include neutropenia and anemia?[is it going to stop my immune system destroying my blood cells and attacking my thyroid or it is quite useless] I do not feel really well since I started taking it as I feel really tired with numbness in hands and fingers. I am also worried about retina damage as I have a strong family history with retina and eye problems in general (i do not have a good eyesight myself and at the end, there is nothing more precious than your eyes).

any books are recommended for me to read and does following a restrictive diet like AIP will help or no.

I am sorry for the long post and thank you for taking the time to read it.

11 Replies
oldest β€’ newest

Hi Nora :)

Welcome to our forum! I am so sorry to hear about the terrible time you have been though.

I hope that you can get onto the path to remission X

So hydroxychloroquine is actually an anti-malarial medication but has shown positive affects on Lupus patients. I am on it and so far along with my other meds I am doing well :)

Your Rheumy should be a lot more focused on your blood results. I am not anemic but I do have thasimmia beta trait so I always come up with a low HB count. If your white blood cell count gets too low you will be at high risks from infection so your GP should take notice!

thank you for your reply. I am glad that you are doing well with hydroxychloroquine .the alarm was raised for my condition after my D and C operation by the gynecology doctor as all what my GP has done was just ignoring my ill health and advising me to take vitamins.it has been really hard time for me after all what I have been through and I am still especially with an unpredictable disease like lupus.

Hi nora123456πŸ˜ŠπŸŒΈπŸŒΏπŸ¦‹

I’m send you much heartfelt love and sympathy for your multiple miscarriages and your complex health problems.

Please take care dear.

πŸ˜ŠπŸŒΈπŸŒΏπŸ¦‹πŸ€—πŸ’—πŸ˜˜πŸ™

nora123456
nora123456
in reply to honeybug

Hi honeybug πŸ˜ŠπŸŒΈπŸŒΏπŸ¦‹

Thank you so much for your warm and heartfelt reply πŸ¦‹πŸ€—πŸ’—

honeybug
honeybug
in reply to nora123456

πŸ˜ŠπŸŒΈπŸŒΏπŸ¦‹ πŸ’—πŸ’—πŸ’—πŸ€—πŸ€—πŸ€—πŸ˜˜πŸ˜˜πŸ˜˜πŸ™πŸ™πŸ™

Hi Nora,

So sorry to hear you have been going through such a tough time.

I am new here too. I was on Hydroxychloroquine but had to stop due to severe dizziness. Hopefully the side effects you are experiencing pass & it will be a beneficial treatment for you.

I hope you are feeling better soon πŸ’—

nora123456
nora123456
in reply to Dm02

Hi Lucy,πŸ’—

Thank you for your reply and I am sorry to hear that you had to stop Hydroxychloroquine.

what did they give you instead, please ? and do you feel better with it or not? as I do not feel great as well but my dizziness is mild.

Dm02
Dm02
in reply to nora123456

Hi Nora,

I am waiting on another appointment with my rheumatologist (requested urgent by GP) to work out the next step of treatment.

My dizziness got to the stage that it caused me to black out so I really had no choice but to stop. Which is a shame as I know hydroxychloroquine can be such an effective treatment for a lot of people.

nora123456
nora123456
in reply to Dm02

Hi Lucydmm,

I am sorry to hear that you had such a severe reaction hopefully you will feel much better with the new treatment😊🌸

Sorry you've joined us Nora! I'm in my 11th year of diagnosis, but was ill before that and undiagnosed. I too have neutropenia and hypothyroidism alongside joint and muscle issues, horrible males rash, and hypertension. Lupus is a horrible and unpredictable condition. Hydroxychloroquine and Mycophenolate have been my saviour the last 18 months, and methotrexate and prednisone before that. It takes time, but your specialist and GP will get you as well as is possible. Lupus UK have a great book called Lupus Diagnosis and Treatment in their online shop, or a DVD if you'd rather. Get yourself as much information as possible. Good luck and welcome :-)

Hi

lupie46,

Thank you for your reply and I feel sorry that you have to go through all of this as well but it is really good that you are doing well the medication which gives me some hope too.

definitely I will buy the book as I need to understand more about it πŸ’—

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