Low white blood count!

[Carolsos]

Hi all, hope everyone is keeping well. I have had a wlc for the past 3 blood tests. So for the last 6weeks I was told I could not take mtx and leflumomide! Now as you know I had a steroid shot in my butt and at last it did work 5/6 days later. That was 2weeks tomorrow. I got another call from my doctors saying my blood test is still not right and I cannot have a prescription for mtx and leflumomide. I asked if I could have another blood test to book and they said NO. I would have to contact my consultants secretary to try and sort something out!!! I am absolutely disgusted with my practice, they have totally left me in not a good place. So into 6weeks and only on hdyr for my ra, not good.

I rang my rumey nurse today and left a message explaining what had happened and I don't know what to do. I have a consultant appointment by phone on 24th September! If I have to wait for that before I have another blood test my mtx will be out off my body and I am going to be in a lot off pain! Anyone got any ideas as what I do next??

Thank you for listening x

[Pognose123]

Hi there,

I have been bumbling along with low white blood cell count since March :/ my GP at one point said they wouldn’t prescribe any more mtx but my rheumy team went mad and said I had to keep taking them. They made me take a break and then have decreased dose and then another break and now I’m just still bumbling along. I see nurse face to face 23/9 but consultant has told them that I need to carry on taking mtx . I would be amazed if your team allow you not to be taking it. Keep trying to get through to your rheumy nurse/team before the consultant appointment.

Word at one point was mtx shouldn’t be stopped during pandemic but I don’t know if that is still the case.

Good luck and take care x

[Mmrr]

I have had low neutrophils on and off for 3 years, depending upon the meds I am on.

My GP refused to give me a prescription for my sulphasalazine, I was unmedicated for nearly a month and felt like death.

I saw another GP in the practice who called rheumatology, they said to give me the sulphasalazine despite the neutropenia.

Don't give up trying to speak to your team, or make an appointment for a different GP.

[Jaxine]

Hi there, I had my bloods done 2 weeks ago, my consultant expressed to me last week that she was concerned my white blood cells were very low, however she was still happy to put me on a 4 week course of prednisone. I did ask if I could have another blood test done ( just for reassurance) as I've learnt one thing and that is our white blood cells can go up and down sporadically as our drugs suppresses our immune system so effects our white blood cells. I had a full blood test and the results showed after only one week my white blood cells had gone back up again. I suggest you ask to have another blood test done. Hope this helps

[Carolsos in reply to Jaxine]

Hi there, when I was getting my last blood test with the rumey nurse, I asked her if I could take my medication and she said wait until your bloods come back before you do. I have asked for another blood test, but my doctor has refused me to make another appointment! Normally I would just take myself off to the hospital for another blood test, but have been told I cannot go there and can only go to the doctors for one. I am goin to try and speak to my consultant secretary today.

Thank you for your replies

[Hidden in reply to Carolsos]

🙄🙄🙄😡it really is becoming so difficult for so many . I honestly feel there is distinct lack of empathy from doctors lately. I said to my own gp not long ago this . I asked if she was in the same position would she put up and shut up .... she was much cooperative after my out burst.

Yes good idea to get your consultant involved we really shouldn’t need to it’s all so stressful.

[Littleredrobin]

I am on Sulfasalazine and Leflunomide and was told last Friday by my GP to stop all meds with immediate effect due to my continued low wbc (have had tests every week for past 3 weeks), she also said she would contact my Rheumy team. Anyway I left a message with the team and got a call back on Monday from the nurse saying to restart both meds immediately! And she’s booked me to see my consultant next week.

I think GP’s always err on the side of caution with blood results but Rheumy team realise the damage it can do to just suddenly stop all medication with no back up plan!

I am so grateful I have an excellent team and I really wish you luck with getting things sorted out quickly, we have enough to cope with without having to constantly battle the system 🤞🙏🤞

[rab1874]

I was talking off the mtx due to it affecting my liver and lungs by GP,just taking toxilimunub now a bit sore but bumbling on xxx

[Canadiangeese]

Interesting, regarding medical system in UK. Over here, my GP has nothing to do with my RA. I see a Rheumatologist every 4 months. She gets all my bloodwork and controls my medication for RA. I have had low neutrophils for years on MTX. Was basically told if the neutrophils are around 1, she is not too concerned with medication. However if it drops below 5, that is danger zone. A couple of times mine was at 7 but my medication was never stopped. Hope you get this all sorted out. Take care.