Hello all I was wondering if anyone has experience or know of research into turmeric and its possible effects on white blood cell production particularly the neutrophils. I’ve been taking mtx for the last 6years and all my regular blood test results have been fine and the RA well controlled so I feel very lucky. For the last 2years I’ve been taking ginger and turmeric in a fruit smoothy each day. Over the last 4 months the blood test show a decline in both white blood cell and neutrophil count ...neutrophils making up a large proportion of the white blood cells. During this time I’ve reduced my mtx. My surgery has flagged this up a couple of times and yesterday suggested I speak to the Rheumy nurse which I have done this morning and will not be taking mtx for this week and have a blood test within a week. I’m really Just looking at other factors which may be affecting it so any info anyone has would be welcome.This may be just a blip but the prospect of maybe having to stop the mtx and change to another med worries me.
And now on to the nurse bit.....sorry this is long but need to get it off my chest !! Up till now I’ve had really good experiences with calls to the Rheumy nurse and always felt listened to and reassured.Today that’s all changed....as has the nurse!She sounded quite irritated and asked Why hadn’t my doctor told me to stop taking the mtx , why had he asked me to phone her? She actually said it was a wasted phone call for me AND HER!!!! I was shocked and furious. I replied that as the patient I didn’t feel it was a wasted call at all in fact I appreciated and felt reassured that my doctor wanted to confirm with with those with specialist knowledge before making a decision even tho he’s in a position to do that.However I was sorry that she felt the call was a waste if her time! After that her attitude became very slightly more empathetic but dismissed any attempt by me to discuss my concerns as ‘Jumping the gun’ and ‘no need to start worrying about that’. I had previously spoken to her during the shielding time to ask if I could have a letter for my employer from my rheumatologist confirming my need to continue shielding but that was dismissed out of hand. I gave her the benefit of the doubt and thought she was having a bad day under pressure and hoped I’d get my lovely nurse the next time I called. No such luck and Now I think this is how she operates. I’ve always had confidence that my calls and concerns would be respected and there would be someone easy to talk to who would listen.Now that’s gone and it has really upset me. We do all we can to keep ourselves as well as we can and functioning and having someone there when we need reassurance advice and guidance is a big part of that process.
Again sorry this is a long post but I know that here we lots of listening ears and just need to feel that .
Wishing you all as good a day as it can be for you.
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I would be inclined (as it is the second time you have had a poor experience with this person) to write it all down. Leave it a day and then re-read what you have written.
If you still feel that she has behaved unprofessionally under pressure then I think that you need to communicate this to someone else - PALS perhaps - so that she can be given support and further training.
I’m very sorry to hear that. It really is difficult when some just aren’t willing to help us and be so dismissive. Can you get an appointment with your consultant? A conversation about med changes really ought to be with them surely and equally your neutrophils etc. I hope you were able to resolve things with your work place.
Thankyou and I agree about co responsibility. My appointment was due in August but hasn’t happened and the Rheumy nurse I was speaking to this morning told me to ring the main booking dept to make one.Ive just done that to be told that Rheumatology are making their own bookings now so I need to get in touch with them!!! For some reason the Rheumy nurse didn’t know this so I’m just building up to speaking to her again. 😲
Unfortunately I was not able to resolve things at work.....as far as their HR dept was concerned shielding ended on 31st July so I was expected back at work. I was given I months unpaid leave and instructed to be back at work 1st Sept. I appreciated the many provisions they had put in place but needed time to work thro my concerns about going back to a busy visitors centre and I was in the clothes shop where people were able to try clothes on which I wasn’t happy about. Rather than fight a battle that I knew I wasn’t going to win I handed in my notice....after 20 years being associated with and working there it’s a big wrench and a sad way for things to end.
Not so much Human more about Resources in this case.
I believe but am not a medical person it might be a good idea to ask about your eGFR (kidney function). I know from experience some stuff can harm and I know that the kidney can be affected by some seemingly innocent substances. It's just a thought but worth making sure its not something else going on. Not all things are down to RA but if your GP has said speak to the consultant then I think he /she should explain why. Still you have another blood test booked so it might be best to be patient not panic and wait until you get the results of that and then insist if something shows up that you speak to the consultant or at least his registrar. I wish you luck and hope all goes well. x
Hi and thanks.Yes all kinds of unsuspecting things can have an effect and it can be complicated. All my other blood test results were fine including kidney function so thankyou for asking.This is probably just one of those blips that happen but wanting to get as much info as possible so not really in a panic....not until I know there’s something to panic about anyway😂.
I gather from the surgery nurse that my gp had noticed the lower readings but hadn’t had the usual flagging up notification of it from the Rheumatology Dept so he was wanting confirmation from them before he made any changes to my meds.Im fine with that.
Maybe they raise concerns at different levels?
Be interesting to see if not taking mtx for a week has any effect..blood test next Thurs.
Low white cells is a well known side effect of being immunosuppressed. I had it on mtx too had to stop for 6 months and go back on a lower dose. Was fine for years. Now I'm off mtx and on Baricitinib my neiutrofulls are low again. Doctor says it fine it's being immunosuppressed. But they will keep on eye on. This is why we have 3 monthly blood tests.
It's nothing to do with ginger or turmeric. Those are both anti inflammatory and I would keep taking them.
I'm currently in a flare but I'm not as bad as usual. I put this down to the Curcumin C3 complex my gp recommended to try get me off anti inflammatories.
With regards to the nurse I think she was mad at your gp not you but that's no excuse for her behaviour. As an ex nurse myself I'm horrified at how she spoke to you. I think old timers advice is excellent.
Sorry you've had this awful experience. She needs some training in how to be empathetic and kind!!!!
Many thanks for the info on your experience with low wbc count and interesting that as long as you’re monitored your doctor isnt overly concerned. It may be that my doctor is extra cautious where as the consultant gives more leaway. My consultant always asks if I’m continuing with both turmeric and ginger and has never suggested that I shouldn’t continue so I was really interested to hear that you’d been recommended the C3 complex and that it’s a better flare than usual....not quite the right description but you know what I mean😊Certainly since Ive been taking turmeric and ginger daily I’ve hardly had any flares at all and then only minor ones.
I should be speaking to the nurse in the next few days to book an appointment so we’ll see how that goes and if needs be I will take it further....politely but assertively of course😉😊
Immense sympathy for you trying to be heard by your rheumy nurse as I have issues with one too. I have complained before about this nurse's attitude to no avail. Having been told by them that I have to accept that I'm old, been lectured on how to run my home with tales of their own experiences and been patronised and dismissed I am at the point of contacting PALS. I shall, of course, employ Oldtimer's sage advice. Wishing you better
I have never had turmeric affect my WBC count... I always check drug interactions with other substances like spices, herbs etc. But MTX did. I had to stop from time to time for a week or so to allow neutrophils to recover.
Your call experience was certainly atypical of support from rheumatology staff... it is my Rheumatology nurse or specialist who have the say in stopping a drug, not the GP.
Hi, so sorry to read about an unhelpful Rheumy nurse, we rely on these people and getting that response is far from helpful.
I found this, which doesn’t mention white blood cells but is interesting and advises caution for taking it with some meds : - sps.nhs.uk/articles/turmeri... Thank you for raising this concern, I have bee taking turmeric capsules. I might just stop them for a while, see what happens.
I am not surprised you are upset. It doesn't matter what is going on in her life, she should not be letting it affect her work. It is not acceptable to be treated like that, by anyone but especially not by someone you look to for comfort and support. It is difficult because you don't want to get someone into trouble but you need to let someone else know, in confidence and ask for their advice. As for the turmeric and ginger. I don't know. I do know that anything can affect 2 people differently and all things have to be taken with caution. I can't really help but would suggest you don't Google it. Too much rubbish on there. What about a registered herbalist or holistic practitioner in the area? Sorry I can't be more helpful. Good luck x
Hi and thanks for your understanding reply. I think because I was expecting to talk to someone who was working for the Help Line it came as a particularly big shock. I agree Google can be a source of so much info that leads us astray.There can be references to some reputable sources but it all takes so much time to trawl through and often confuses me even more 🤨
I asked my rheumatologist about taking turmeric with methotrexate and about reports I’d read about it affecting the liver.
His response was he couldn’t see a problem with it and if I felt it helped go ahead but to bear in mind it was a toxin and therefore was adding to an already overloaded liver.
Sorry, all I know is that I’m allergic to turmeric. Broke out in an awfully itchy rash on my chest. Olive oil was the only thing that relieved the itching.
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