Hello all , recap of probelm , wbc fluctuating between low and very low since August due to rituximab treatment for Sjögrens , slipped disc in December and need disc surgery . My surgery was cancelled on the 27th as wbc was 2.9 and neutrophils are 1.3 and there would be a risk of a spinal abscess . I am now belatedly on a campaign to improve things before new surgery date on the 10th May, wbc replace themselves every few days so i have a chance. Im taking vit c , zinc , selenium and folic acid , im also making smoothies with my new nutribullet with kale , ginger ,spinach, oranges , blueberries etc etc and im finding them rather tasty 😀 I don’t know what else to do, i have spoke to the rheumy nurse and she will speak to the consultant as they are concerned about the bloods as well . I would be grateful if anyone else has any other ideas as im confined to the house due to pain and immobility and im getting down about it all . Best wishes to all
Low white cell count - raising it with smoothies ?😳 - LUPUS UK
Low white cell count - raising it with smoothies ?😳
Poor your W - so hope your smoothie campaign does the trick so you can have your op on 10th. The very healthy diet certainly won’t harm and may do you lots of good 🤞🏽🤗
Meanwhile I find audio books and any gentle exercise you’ve been advised to do really help me when I’m low and housebound. Also a good chat on phone to a friend or family member who is also at home and makes me laugh, usually helps pick me up. X
Thanks twitchy , im in a catch 22 at the moment, i cant have the surgery because of the low wbc and that means i also can’t have the rituximab ( was due in February ) until wound heals , if i have it before i have to wait 6 months . I do find laughter a great therapy, I have downloaded some great books but always fall asleep after a couple of pages as suffering from awful fatigue 😴 . Best wishes xx
Yes laughter is the best medicine for me certainly - the endorphins need a regular joy ride! Xx
My wbc is very often low. I have never been given a reason why though. To try and increase it I was advised to drink Green tea, add ginger to my diet, (which I did as ginger tea), eat foods high in selenium, such as Brazil nuts, eggs, turkey, chicken, spinach, sardines and yellowofin tuna. It was also suggested I eat probiotic yoghurt or take a probiotic. The other thing that can help is a good multi-vitamin. I can’t take this as I have higher doses of some vitamins prescribed.
I hope that you manage to raise your wbc and get your op on 10th May. Xx
Thnks Gloomy , i have a cupboard full of different teas as well , even converted my husband . My wbc was low even before treatment and has got worse since. I do eat a good diet though maybe i do have a bit too much sugar 😀 . There is a treatment , granulocyte colony stimulating factor ( G-CFS ) but i dont know in what circumstances it’s given, i was hoping the rheumy would provide advice . I hope you are keeping well at the moment xx
Hi weathervane, sorry to hear you are having a miserable time.
Your WBC and neuts are pretty low. I once had a neut count of 0.6 so I can empathise.
Sadly, with the infusion you have had this can happen. Once you've been on biologicals your immune system is never quite the same again. It doesnt mean it won't recover, its just changed.
I think a healthy clean diet is vital but I would say that the potency of the medication will far outweigh the use of a good diet, although it won't hurt. I just dont want you to get your hopes up. The infusion is more powerful than any smoothie I'm afraid. It may just take time. As soon as your white count is back up I'm sure you'll be a good candidate for surgery, until then its probably a waiting game.
I'm so sorry about your frustrating situation. Keep posting xx
Thanks, your bloods were very low ! Was there a reason for that and did you receive treatment ? My wbc has been fluctuating alot going up to not a too bad a level then down again in a couple of weeks , so its a bit of a lottery . I don’t know what else to do so will try anything xx
With hindsight The cause was a lupus flare. It was the first big one. I was neutropenic but prior to the bloods coming back they suspected meningitis so I landed up having IV Benpen and IV Cef (antibiotics) which would have protected me from infection anyway. Once meningitis was ruled out I was sent home and told to have bloods repeated in a week and my bloods slowly improved.
It was another two years before lupus was diagnosed.
That’s interesting. I probably in hindsight had Sjögrens for 5-6 years before i was diagnosed 2 years ago. My lymph nodes were all very enlarged and felt very ill , aching in my joints and muscles. Sometimes it takes a crisis before action is taken. I hope you are keeping well at the minute xx
Hi WV, I don't have any suggestions but I wondered if your WBC gets that low each time you have the rituximab treatment? Does it usually take some time for them to build back up?
Hi there , i haven’t had rituximab since last July and though it has been an issue before it is now more persistent and has been monitored closely since then . Nice to hear from you xxx
hope the things you're doing are helping. 
Thanks, i live in hope 😀
So sorry to hear your surgery was cancelled. Hope the new plan works for you, fingers crossed! Let me know how things go. I’m off for my dermie appointment this morning so will see how my wbc’s are doing.
Thanks Barbara, i am turning a lovely shade of green from my kale smoothies 😀 I hope all goes well with your appointment today 🤞🏻
Hi there is a webinar running -not sure if it’s finished -but u can buy it if want. It’s cslled the auto immune sectets.They go around speaking to doctors and scientists about auto immune diseases and the information you get is amazing -they run 1 each day and leave it on for 24 hours.yhe guy that hosts it is called Jonathan Otto -glad to see you are trying to help yourself with good food aswell -
Thank you for the information shamac , i will check this out and see if i can pick out something that will help🌸
Hi weathervane,
Hoping I'm not too late to add to this: The growth factor injection really could be your best bet. I've had them many times while on chemo. My wbc would drop to 0.1 every time. So for protection the oncologist would give me the growth factor injection each round. It goes in the belly and stings for a bit. But it made a difference to me. I got sepsis on my first round of chemo, but after the injections, I never got it again.
Also, I was told at the clinic that a neutropenic diet is actually one with nothing fresh... Alarming, I know! That was because of the risk of infection being so very high and anything natural, even pepper! could possibly carry bacteria. It seemed so utterly counterintuitive for body healing. But then I got my head around it, embraced the months of eating from tins and boxes and fruit and veg that could be peeled, knowing I'd get back to my fresh stuff soon. Now that was a cancer situation and a worse case scenario at that -- but if you do get the op and your wbc has that dropping reaction, definitely ask for advice from the nurses about your particular situation.
I just wanted to let you know my experience of this and also say that my white blood cells are pretty ok now -- 6 years on. Well, before I start taking the immosuppressants for uctd next week that is......
The fact that you've already had one op cancelled should make you a very good candidate for the growth factor injection option. At the very least, it should give you a good reason to ask for it.
All the very best. Stressful times for you.
Panda
x
Thanks panda , I hope you are making a good recovery and that the immunosuppressants are not going to effect that you have been through already.
My wbc have not gone as low as 0.1 , I don’t know if this is the cut off point for the growth factor injection , im having difficulty getting the information . Im still waiting to hear back from rheumatology. Please let us know how you get on with your treatment, I found the rituximab a great help despite the side effects. Best wishes 🌸🌸🌸
Hi there , i do have updates 😀 I got my bloods checked again and the wbc was 3.4 which the anaesthetist was content with , so i had the discectomy last Thursday Woop woop . So far all is good , initially i was very tired , sore and stiff , but i could move and feel my toes an my leg felt much better - the surgeon had to remove part of the disc that was wedged and some bone , so it obviously needed done . It will be a week tomorrow and im stiff sore and stiff where the op was but I feel so much better. I can walk and go up and down stairs normally , which feels weird after hobbling about for so long ! Definitely good news for a change . I have to see the rheumy on the 8 th to see about the rituximab, i am going to continue the smoothies and see if they help to maintain the wbc.
How are things going with yourself and treatment, I hope things are positive 😀xxx
sorry I hadn't seen you replied till now. I'm so glad you got the surgery and it worked! Will you need more follow up surgery or should this take care of it? What are you putting in those smoothies? Sounds like to need to continue those when you do your next rituximab. I'm doing better. Have adjusted to the chemo a little better and not having the old lady hot flashes like I was! muscle aches are a little better and I haven't yet lost all my hair so I'm staying on it for now. Plus I can still taste chocolate so it isn't all a bad day. lol
I put in berries pineapple ginger kale spinach and flax seed in different combinations 😀 getting bloods checked again Friday so will be interesting to see if still working as im going to continue with them . Hopefully will only need Physio. Im so glad you are coping better with the chemo , you are being very strong . My father in law has had 4 lesions removed but has not had to get chemo, that was from a life spent outside with no sunscreen. Chocolate is essential for wellbeing and happiness and is a essential food group 😋😋 best wishes , good luck with rest of your treatment xxx
Hello Weathervane I do not know what is going on with my HU communications but I seem to have missed so much. I am so glad to hear you have had your back surgery. I hope you continue to make good progress & that your leg is behaving ! I am like you were, awaiting back surgery firstly postponed in October past because of vasculitis & panniculitis flare, then 6 weeks ago because free T4 through the roof. Still waiting for new word, this is second spinal surgery. Anyway I am so glad you so far on & leg has eased ... all the very best, When do you attend post op Physio, ... oh I assume it was the lumbar zone that the discectomy related to. How long were you an in patient? Thank goodness your continuous pain has eased, maybe we should think of ballet if I ever get as far on as you!! Take Care & keep those miraculous home made smoothies going ... !! So Well done, take good care. X Pixiewixie
Thank you pixie for your post 😀 You have been having a difficult time ,and suffering from all the delays ! I was in for one night , i was sore , stiff and v tired after which is expected, i am feeling alot better today, stiffness is easing and went out for a lovely walk in the sun and felt good after. I went to hospital to get bloods checked for possible rituximab in 2 weeks if all is ok . The nurse checked the scar and is really pleased with it , so all looks positive 😀 i see the consultant in 8 -9 days ( L5 discectomy) and I will get advice re Physio then , just doing gentle exercises a moment . Still going the smoothies so i will be interested so see if my wbc is still up . I might be more up for pilates or yoga rather than ballet afterwards, I don’t think I’d get a tutu to fit LOL . Is it another discectomy that you need done ? I really hope you get a date soon and that all goes well for you , best wishes and good luck xxx
Thanks weathervane, yes my first was prolapse L5 & discectomy also. I have problems with the spine & am waiting for decompression of L4 & L3 on both side for stenosis, amongst other things!! Wish it was here no matter how much I hate hospital. You must have had a good surgeon, in overnight. I keep forgetting that getting you out of hospital is a very important priority, I remember when back surgery was a much longer hospital stay!! it sounds like you are doing brilliant! Do not walk too far, sometimes we feel very well & do more than we are able. Do you still use the crutches at all? Well hmm I am not sure that I could lift the old legs for yoga or pilates so I thought I might as well say ballet. All is way beyond me even if the tutu fitted !! ( Actually it would never fit me, no matter how big)! Is this your first rituximab treatment? My immunosuppressant has never got started as the surgeon says 'not before surgery'! Just holding on to a maintenance steroid dose & I look even more like Mrs Humpty Dumpty! Anyway so, so glad you are on as far, keep those smoothies going! Very, very best wishes xx Pixiewixie
I was lucky to get out after one night , the biggest risk was infection so i have tried to be really careful. I have had 3 courses of rituximab but have not had one since July because of this . Have had a good response to it so far and always ask for a slow infusion as i find it easier to cope with . Im off the crutches which is great I feel lilke a different person, friends have even noticed a change in my voice as more relaxed. Please keep us updated as to how you are getting on , i will keep everything crossed for you 😀 xxx
Thank you xxPixiewixie
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