Low white cell count : So frustrated. I have early... - NRAS


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Low white cell count

28 Replies

So frustrated. I have early undifferentiated arthritis, diagnosed in the autumn. Having tried Hydroxychloroquine which did nothing and sulfasalazine which made my neutrophil and white cell counts drop an which I had to stop after only two weeks I was switched to methotrexate which I had been trying to avoid as debating a further pregnancy. I have had two doses and have spent the last two weeks feeling dreadful with nausea, tummy pain and exhaustion on top of sore joints only to have gone for my first bloods today to find white cells count and neutrophils have dropped out of range again 😢! I haven’t dared ring the rheumatology helpline yet...feeling a bit upset and lost...my immune system seems determined to attack me and hate DMARDs! Has anybody had a similar problem?

28 Replies
Lolabridge profile image

No but it would seem you have now “failed” on all three DMARDS and should now be offered a biologic therapy. You should contact your Rheumy to ask what they suggest next. Good luck!

rounder profile image

That's tough, no wonder you feel a bit defeated. Don't give up, there are lots of meds to try. I had lots of issues with neutrophils falling until I was given abatacept, it controls my RA well and all the bloods are within normal range. I suggest contacting your rheumatologist for advice .

Thank you both! I shall bite the bullet at email them 🙈 Let‘s hope they have a bright idea. Would be nice to get past the side effects only and no benefit stage!!

in reply to

You will .. I did as did Deeb who posted earlier. She had a really bad time with side effects but now has found one that likes her and is starting work .. don’t lose hope .

in reply to

Thank you x

Oshgosh profile image

If you need to ring the rheumatology helpline ,do it. They’re there to help you.Hopefully if they are aware you’re struggling,they can hi and advice / help.x

recorderplayer profile image

I also have problems with my neutrophil count since starting methotrexate two and a half years ago. I have to have a break from it for one or two weeks every few months. But now methotrexate is not working so well in my hands and I started on Hydroxychloroquine as well in January - so far it has not made any difference. The last consultant I spoke to said he was reluctant to prescribe sulfasalazine because that can also lower wbc. I asked about biologics and he said that these might be considered. I'm fortunate to be fit and healthy apart from the RA so would have concerns about side effects. I guess the rheumatology team will balance that against possible long term damage to my joints.This may not help you too much, but it's good to know we're not alone with these struggles.

in reply to recorderplayer

Thank you. Def good to know we‘re not alone. Good luck 🤞🏻

Mmrr profile image

Ditto to all that has been said above. I have permanently low neutrophils, but they are 'better' on advanced therapy than the traditional DMARDs. Hopefully you find something that suits you soon.

LJRT profile image

I feel your pain.. In am constantly being taken off my meds due to Low WBC. Stay strong xx

in reply to LJRT

That sounds hard and frustrating. Thank you for making me feel less alone!! Good luck

LJRT profile image
LJRT in reply to

Stay strong, speak to RA team they may up your blood tests to keep a eye on it i'm on weekly atm x

in reply to LJRT

Thank you x (can’t Make the like button work!)

francko profile image

I've always had a very low neutrophil count even well before RA kicked in almost 2 years ago. Greater than 95% of the time it's below the normal range and only rises when I get an infection or my RA isn't under control. My consultant was concerned about my low count until I showed him blood data from 10 years ago that showed a very low count. I was and still am a very fit person and this low count seems to run in the family as my brother is the same - he doesn't have RA by the way. Reducing my dose of MTX hasn't made any obvious difference but I will continue to try to reduce the dose until any symptoms return.

in reply to francko

Oh no. That sounds complicated. Unfortunately mine is usually normal and recovers as soon s the drugs are stopped...

LuckyMB78 profile image

I completely understand! I have also avoided Methotrexate for the same reason as you. I could not tolerate Hydroxychloroquine or Sulfasalazine, both made me incredibly sick, weak and dizzy. I was taken off them and my consultant has since been trying me on biologics. I haven’t found one that works yet but side effects are much less than with DMards and I’m still hopeful. Can you ask to try biologics?

in reply to LuckyMB78

Not sure o quite qualify but hopefully they will have a plan. Thank you x

Endless profile image

I’m so sorry to read what you’re going through but so pleased you wrote this because my neutrophils went low last week and I’ve had to stop Leflunomide until my next blood test next week. This is the second time it’s happened in two months. I’m on fortnightly blood tests because of it. I also take the biological Humira. I’ve been well on this combination other than my low neutrophils. Have tried methotrexate and sulpalazine but they didn’t work so well for me. Please call your team and they will help you.

in reply to Endless

Thank you and good luck!!!

Gilliancheche profile image

I have low white cells and neutrophils, have had fortnightly blood tests for last 16 months(all through lockdowns). Am on MTX injections but still have symptoms. Not sure i can offer help but low blood count is a widespread problem it appears

Jacqbox profile image

This might be of some help. I have had a cyclical neutropenia for some years before I was diagnosed with RA. It became so low that I was referred to haematology at my local hospital. This was about 15 years ago & a couple of years before my RA diagnosis. My haematologist from the beginning said that my low neutrophils were related to my RA & that should improve as my RA got more controlled. It has taken some years but my levels are always on the low side of normal but now more stable & I have now been discharged from haematology

in reply to Jacqbox

Ah thank you, that is interesting to know. Glad you have been discharged from haematology.

Doughnut61 profile image

Hi I started on MTX and HYDROX I could not tolerate various problems, now on Sulphasalazine for the last two years neutrophil has been below normal, plus raised liver readings. I have not touched alcohol or chocolate I have lost 12lbs in weight, I feel lost and don’t know what else I can do 😭 so I really do sympathise 🥰

in reply to Doughnut61

I‘m so sorry that sounds difficult 😢 I hope your team come up with a plan and you feel better soon x

Brychni profile image

Hi there. Yes, white blood cells always low but not considered an ongoing problem. How long were you taking hydroxychloroquine? I stopped thinking it hadn't done anything and wished I hadn't. Back on it now.

in reply to Brychni

I took it for 3 months at maximal dose by body weight and it sadly didn’t help at all. The rheumatologist stopped it.Is it helping you now?

On the sulfasalazine my neutrophils just kept on decreasing. So it had to be stopped. They want me to try a further two weeks of methotrexate in the hope that the neutrophil count will stay a bit low but not keep dropping otherwise they will probably have to stop it as well.

Also told to increase folic acid to six days a week and split my dose to help with the side effects...

Brychni profile image

I was told from the outset that it could take up to 6 months. After about 9 ish months I developed more symptoms, additional, not a worsening of existing ones which did seem to go away or improve. At that point I was given MTX without even a consultation, over the phone by the nurse. I stopped both a couple of months ago, in protest, and then went private. I noticed pretty quickly that things got worse while I was off medication but wanted to wait for my scans and second opinion.I am back on hydroxyc. now and have been taking it for about a week.

I need to point out that I am still not really any the wiser about what is wrong with me. Shortly after the private consultation I received a letter from rheumatology at the original hospital with an appointment for a 'second opinion.' that's beginning of July. I'm desperate to find out what the hell is wrong with me and I suspect it might be lupus which was suggested at my first 2 appointments because of my blood results. It wasn't pursued though and not even by the private consultant.

I'm so sick of it all. Really, really sick of it.

Between the GP, NHS rheumatology and the private rheumatologist there is very little joined up thinking and I am spending a lot of my time making phone calls about results etc and basically doing their admin for them.

Methotrexate did absolutely nothing for me and it was on that basis that I was discharged and referred for physio (which I have wanted for ages). The private consultant however, said the opposite and put me back on hydroxyc. but agreed that MTX was over the top. she was also very scathing about prescribing such a drug over the phone without a consultant approval.

Good luck

in reply to Brychni

That sounds dreadful. No I was told if it hadn’t had any effect at 3 month mark (I was still getting worse) then it wasn’t worth continuing.Have you responded to steroids? Like you I don’t have a clear Diagnosis but did respond to steroids. I have to say o have been monitored fairly closely while taking meds esp now with the MTX. Do you have a rheumatology advice line or email?

It’s such a frustrating process it seems.

Take care, I hope you get answers and help.

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