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Behçet's UK
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Neutrophil - low white blood cell count

Hi, I am wondering if anyone has had low white blood cell count whilst taking Colchicine, I note from the instructions in the tablets this can be a factor, I have recently had blood tests again to rule out several things after having continuous strep throat which the GP has been reluctant to treat as I am on a trial of this drug... I have repeat tests booked for next Thursday because these are low, I had my tonsils removed just over 2 years ago after suffering a lifetime of horrendous problems for 40+ years and I was not expecting to have this continue now on the back of my throat and mouth... Any tips to help boost myself, I do all the normal gargling etc which helps but does not get rid of the stuff and I'm taking multi vitamins and probiotics as well as fish oils... The Colchicine has been good in reducing both sets of ulcers and the severity which is a big bonus so would be reluctant to come off them now. Thanks, Gillian

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Any drug you try is going to lower your immune system, it's just a balancing act when you become ill as to whether you can fight off the infection while on three drug or not. I just had to stop Cellcept courtesy of a virus, but o my because I have a history of serious and long lasting bronchial infections. For all intents and purposes I'm in remission after six rounds of Cytoxan, but I still have low level symptoms that may never fully resolve. I was so severely ill that my doctor was hesitant to have me withhold the cellcept but agreed since I just finished Cytoxan in April.

Long rambling point is that, yes, low cell counts are common, but only you and your doctor know if they're low enough to withhold treatment during a given illness, or if they're even all that low for you. My body is insanely insistent on making white blood cells...until Cytoxan. Doctors were even shocked by how quickly all of my cell counts dropped. My dose was adjusted based on that. Maybe colchicine is working for you, and could work at a lower dose? Or maybe you need to be immune compromised to this level to see a result in symptom relief.

One thing to consider is the possibility of thrush. If it is strep, you may just need a longer course do antibiotixs. I'm 10-14 day girl with strep, or was prior to allergies. Now I don't know what that would do. Even after 14 days, I was still testing positive with my last go at Strep like 10 years ago. It took me a month and half at least to swab clear of it but I was feeling better at around three weeks. (Worked in quality control at the time and had to back out of my job because they couldn't train me with active infection.)

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Thanks, this is the first time my blood has been tested since starting colchicine all my previous blood tests prior were normal.

It is great you have been able to reduce your symptoms with Cytoxan you must be so thrilled having suffered so much.

I have yet to be given antibiotics the GP's are being overly cautious and would prefer me to see the rheumatologist but that appointment is not until September... it's because I'm newly BD diagnosed and I think they are a little hesitant and I have had to self manage with the tonsils for such a huge amount of time without continually being on antibiotics that the streps is somewhat minor in comparison to the awful pain I got from them for decades, it was a horendous recover from having them removed but I'm much better without them, I've suffered for at least 40 years with both sets of ulcers, joint pain, inflammation, tonsillitis etc which has got worse not better with age and with no accurate diagnosis saw me go downhill fast a couple of years ago and seeing all these specialist nobody could give me a clue and then eventually the diagnosis 12 months ago was given as joint hypermobility syndrome (JHS) yet still no diagnosis for both oral and genital ulcers... anyway 12 months on from then and another consultant and BD was diagnosed with the JHS being reclassified as ehlers danlos type 3, I was put on colchicine (I'm 3 months into a 5 month trial) which has made a great improvement with the severity and frequency of the ulcers, started off at 0.5mg once a day, then 1mg and now I am on 1.5mg a day, the joints appear to hurt more but I have noticed the inflammation around my joints has reduced, and the strep throat has just got worse, I have just started my old tonsil regime of gargling with tee tree and water and the other stuff and this is helping keep things more under control, will have to see how things go... Thanks, Gillian

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My main symptom with Behcet's are ulcers in my mouth but since I changed to an organic natural toothpaste my mouth ulcers have nearly disappeared. No harm in trying as no side effects. Xx

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Hi, yes I have tried this previously but sadly made no difference to oral or genital ulcers, it is great it works for some people. x

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I do use lots of natural remedies. Have you ever gargled with Manuka Honey 15+ this may help as it reduces inflammation. You need to do these things for at least a couple of months for them to have an effect. Also Mer Sol 30c good for ulcers never touch tablets put in cap and pop into mouth use every 4 hours then reduce until stop a really good homeopathy remedy. They can help both mouth and genital ulcers. You think that you have found something that helps your Behcet's symptoms for a few months then you find you are back to square one. Coffee used to aggravate my ulcers big time. All the best

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Hi, thanks, I come from a family of alternative remedies it is within our bones to look at alternatives, myself armed with my mother and sister have tried me on lots over the years including Mer Sol and Manuka honey but this was a while ago prior to being diagnosed, at the time of trying in the past I honestly never found a difference other than the honey being soothing, I do get temporary relief in my feet and ankle inflammation with soaking them in magnesium and I use quite a bit of aloe vera on my inflamed joints as well as arnica on bruises and thread veins. I really do not want to take Colchicine it is the first medication I have tried I have been happy to self help as far as I can and I have to say I was desperate and until I find something else that gives me the relief colchicine is doing with my ulcers it is going to have to stay in place I simply do not want to go back to where I was before, I have changed my diet, withdrawn food groups, tried numerous supplements and tinctures over the decades each one I'm afraid if they do have some relief it is somewhat short lived, all my medical notes have on them I do not like taking drugs, and I was surprised the last consultant had taken note of this and was happy to discuss this with me, if I can take a drug for a short period of time when I have a flare up then that is what I want I do not want my body to rely every day on drugs, I did this previously with a drug for 9 years and then had a horrendous time coming off the drug only to be told I should never have been left on it all that time, amazing the consultants who come out of the woodwork after the fact... anyway thank you I will rethink about what you have said and look at including them again to see if they can help as well, I have them both in the cupboard so no excuses. Gillian x

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The other thing I forgot to say have you ever had a vitamin D test done. I had terrible joint pain was very deficient so take it every other day now. That was the cause. All the best Biddy xx

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Hi Biddy, yes thanks I have had vitamin D checked too and was sent for both bone scans, I'm unsure and nobody seems to be able to tell me which condition I attribute which pain too, having BD and Ehlers Danlos type 3 both affecting joints but I do not know how it affects joints in BD it would be good to know if this is the same or different feelings as Ehlers Danlos. I will collect copies of my last blood tests hopefully tomorrow and I will compare each test done in April at the hospital and then the same when they do the next set, it will just give me an idea if things are the same or changed with any significance. Gillian x

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I had never heard of Ehlers Danlos but reading what is says it doesn't sound like my bone and joint pain. Mine is more of a deep burning sensation that builds and builds over a period of weeks/ months. Once it gets so you feel you want to scream from lack of sleep and pain it starts to get better. Then it moves somewhere else. The bone pain is like somebody sticking needles into your bones with sudden pain ripping through you but you have this continuous ache that you can't get comfortable. I think I must have quite a high pain threshold or I am so used to it now it is just part of my life. Life with Behcet's what joy xx

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Hi Biddy, what you describe in your joints and bones sounds like what I experience but I do not getting the sticking needles in bones, sounds awful, like you I had not heard of Ehlers Danlos I was initially diagnosed just over 12 months ago with joint hypermobility syndrome, I knew I was hypermobile but no idea it could have become a problem and I did not understand when given the diagnosis why it did not cover all of what I was suffering, then when I was referred back to rheumatology with the ulcers it was the consultant who said the joint hypermobility was redefined as ehlers danlos type 3 because I have other issues too that fit in with type 3 plus and joint hypermobility, I am still trying to get my head around both BD and ehlers danlos, I actually thought when the diagnosis of joint hypermobility was given over12 months ago that it was a joke since I had never heard hypermobility could be a problem and initially it appeared to answer a few of my issues but not the flares and no answer for the ulcers and when I was diagnosed with BD it all fell into place much more that joint hypermobility syndrome, with this I feel pain when I have over extended and because I now know about it I try as much as possible not to do this and watch my joint placement and I'm trying to build up more strength around my joints which I hope in turn will now help with BD too, it's not easy as I fatigue easily and sleep is very difficult I'm up and down all the time, like you I think pain has become normal it is sad really at the moment things have been difficult since mid April and I'm waiting for this flare up to settle down and had hoped the colchicine would help with this too, maybe the low white blood cells are creating problems in other parts of my body too. Take care, Gillian x

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I really hope things get sorted. All the best xx

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I have just been taken off Colchicine by my GP I have now got a hives like rash over my upper body, I go for planned blood tests again on Thursday and will see what results come back for white blood cells, I have said to the GP I want to go back on Colchicine again but will keep at 1mg per day and see how I go on with this dose and if all the stuff starts again, strep throat, hives rash and abdominal cramps, not to mention the ulcers, I will come off and wait until I see rheumatology in September... feeling kind of deflated. Does anyone know if we have an alternative to Colchicine? Thanks Gillian

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