Hi - has anyone had continual problems with low white blood counts resulting in having to come off various RA medications?

[heatherp]

I was taken off MTX after 7 weeks despite it working really well as it caused all white blood cells to drop to very low levels. Started leflunomide 6 weeks ago and have now passed the level in white cell count where it's recommended to come off that! Since the whole point of these meds is to reduce the immune system, surely they will all do the same? And my RA isn't even completely controlled and has been getting worse as WCW drops!

[Hidden]

I wouldt be happy with those readings...mine got low on mtx.. be careful hey can be both be quite nasty drugs.. lefunomide.. closely monitor results.. that drug has to be "washed from system" if problems occur.. get advice immediately mon morning alison aka summer

[heatherp]

Thanks Summer - spoke to doc on Friday as he rang with results. He said he would be taking me off it, but rheummy has said to wait a bit longer! WBC currently 3.4 (guidelines say to come off when below 3.5) but rheummy said to wait and only come off if they go below 3! Since they have been on a downward spiral since on leflunomide I don't see them suddenly increasing (also lymphocytes only at 0.4!)! Have agreed with GP that we will do another blood test this week and if it's decreased any further then come off. My other concern is that if this has happened with 2 DMARDS, won't it happen with others? What would my treatment be then?

[Hidden]

Hello there

Sparkle here Alison knows her stuff as she is qualified as a pharmacy tech I think. Obviously none of us on this site can give professional advice and can only comment from patient experience. That said its helpful to take into account peoples professional knowledge when they answer questions.

Like you I have had to come off Methotrexate for low white blood count. Mine was Point 7. Really low I think. Do you know what WBC were low? eg T cells or B cells or neutraphils? Its interesting because before I went on any DMARDS and before I got diagnosed with RA my Lymphocytes ( B and T cells) were always low. It was never followed up my GP but it always made me think there must be a cause. Recently I asked my rheumy consultant and he said that RA ( without the drugs) can cause Low WBC. I still havent got my head round it all yet. Am still learning. But I think you should find if your WBC count wasnt to low before drugs it should go up again. Not quite sure how long it takes though. Dont despair from what I can tell from People on this site who have had RA a long time- there are lots of different drugs and options to try.

Keep me posted

Fiona

ps when your WBC is v low you have to wash all fruit and veg and dont eat unpasteurised cheese etc

[Hidden]

I have just read your latest reply. Your lymp`s do seem a bit low. I wasnt happy to continue on point 7 because I read that under point 5 we are at risk of serious infections. That is not medical opinion or advice on my part only what I have read. I am surprised that they have persisted- my nurse didnt hesitate to say I had to come off methotrexate when my Lymphocytes dropped to .7 and my WBC 3. Guess there must be other clinical reasons in your case. There also seems to be a lack of consistency between rheumatologists here.

I was given a copy of the shared care guidelines and protocol for monitoring methotrexate given to patients and GPs after I complained to my Rheumy that I hadnt had sufficent blood tests. I hadnt !! The guidelines in this state to GP

stop and withold if

WCC less than 4

Neutrophiles less than 2

Platelets less than 150

increase two fold rise in ALT/AST

steady decline in WCC/PLatelets/albumin even if within normal limits

Rash/itch or uloceration

New or worsening cough/dysponea

Worsening renal function

Im not sure what the monitoring requirements are for Lefludomide but i would have thought that they would be similar to methotrexate.

I have had real trouble getting these Blood figures regularly read out to me and in time before I was due to reinject Methotrexate.

I dont think they always follow the correct protocol which is why I prefer to try to monitor my own results. they are not keen at gPs though if you tryto do this as a general rule.

Good luck with it all Im sure it will all pan out for you

Fiona

[cathie]

When I go for a blood test, like today, I usually ask the nurse for a copy of the last results. I usually only follow ESR, but thanks to you, above, I can see what's happening a bit better.

We do have a right to these docs but not much use unless you understand!

[heatherp]

Hi thanks everyone! @ Fiona interesting what you say about your lymphocytes and how RA can make them low (in abscence of medication). Mine have also always been low (first reading when diagnosed in Sept last year was 0.9), but have been over 1 on the odd occassion then. However have just continually decreased on leflunomide. Agree there is inconsistency across guidelines. I am lucky in that I get all blood results in my monitoring booklet about a day or two after tests, and if any other tests are done docs are fine with giving results. When I was taken off MTX my WBC was 2.4, lymphocytes 0.5 and neutrophils 1.2 which was the one they were concerned about, so this time isn't as low, but still low!

I guess I'm curious about what the options will be if all meds do this to me!

[Hidden in reply to heatherp]

Hi again Heatherp

I have dug out a letter from my rheumatologist which was sent to my GP about 3 months ago. In it he states" she ( meaning me) has a number of adverse prognostic factors and in my opinion needs a biologic. like you I have tried and failed on DMARDS. he also very interestingly goes onto say

" with her antibody profile Rituximab may be a better staring point than Anti TNF. My anti body profile was as far as I am aware strongly positive ANA at 1: 2560, fine speckled pattern. ENA testing revealed antibodies to SSA and SSB. At my next appointment i hope to have explained to me why this antibody profile would suggest Rituximab- which according to NICE guidelines is nearer last on the list.So not usual protocol really. I actually respect his opinion and dont think he would have said that without a medical reason- I wonder whether you have similar antibody profile? I agree with lyn, we are all unique individuals at a cellular level- however the guidelines are there for good reason. Based on experience and clinical monitoring etc research has shown our risk of certain problems such as fatal infections from neutrapenia increases when we continue taking a drug once our blood count reaches a certain point. Thats why I believe Consultants issue Shared care protocols to GP`s which are in a sense almost covering their back should the worse event occur. I guess its a cost/benefits analysis but for each person to make an individual personal decision on. Only each individual knows how much pain and disability they are having to endure and whether it is copeable with. Rec

I think it is ok to take risks with drugs and I intend to take risks personally with Anti Tnf but my personal view is that we should be fully in control and the first be made aware of all the risks. You were lucky to get your methotrexate booklet filled out. My GP surgery had never heard of it. Considering 96 people have died as a result of a breakdown in the NHS shared care protocol re Methotrexate I think it is woeful. I nfeel obligated to speak out about what happened to me re methotrexate because it was a breach of protocol and I beleive constituted a critical incident. Hopefully the figures have improved since the NHS Patient safety Alert leaflet towards a safer methotrexate was issued ( i think about 2006) IAs I say 96 patients I believe had died due to problems with this drug. Thats someones mum, sister, brother, dad ,nan etc etc. Even 1 would be too many. All the best with treatment- keep me posted

fiona x

[heatherp in reply to Hidden]

Hi thanks for that! Regarding bloods, I am ANA positive but didn't get a reading in the same format as yours - I've never understood as whenever trying to read about it they show it in similar format to what you are showing, but my reading was simply 45 (normal range 1-10 I think). Didn't describe a pattern either. I was negative to SSA and SSB, but positive to anti dsDNA (ie they then diagnosed me as having a crossover between SLE and RA). I have questioned them (GP and rheumy) about whether or not the SLE would be the reason for the low bloods but they've always said they are confident it is the medication causing problems.

Oh well, having blood test tomorrow so holding thumbs things haven't decreased further!

[Hidden in reply to heatherp]

Even if they have which prob they havent !!! they are monitoring you and I expect that they can treat the problem before you get any complications. My rheumatology team seem confident that it can be managed. I think thats prob the key. Let us know how you get on.. Im waiting for my count too so we can see who is the winner ( lol)

fiona xx

[heatherp in reply to Hidden]

well got my result and WBC has 'risen' by 0.1 to 3.5, so on the border now! So can continue for now, however have just developed a really bad cold to make things worse!

[Hidden in reply to heatherp]

Hi Heatherp

thats good that WBC has gone up a bit. Have you been given antibiotics to cover yourself re the cold? Mines gone up too as only on steroids due to

probs I have had with WBC and DMARDS. Spoke to rheumatology nurse yesterday and she said that there had been a breakdown in communication and she hadnt seen a letter where my Consultant says due to my anti body profile I should go straight onto bilogic Rituximab. Shes speaking to him tuesday so I will find out whether it will be enbrel or rituximab. I am really suffering without methotrexate now. Been looking into the antibody tests they do as well apparently certain results help to define diagnosis. For example I have Srjogrens syndrome and RA and 90% of people who have this are positive to antibodies SSA ( RO) and SSB ( LO) . It would be better to think that we could target treatments with biologics instead of just taking pot luck. IF your WBC count does play up you could try biologics like I am?

Hope your cold gets better soon take it easy

fiona

[Hidden]

Hi Heather

I think the inconsistency isn't so much to do with the guidelines (which are just that and not fact!) but perhaps the difference between us as individuals and our RA pattern. This is one good reason why it is important to know how you feel in relation to the disease as well as looking at the figures in the book.

For example, many years ago before the onset of RA I had glandular fever. This caused a complete drop in my white cell count that has never fully recovered. Invariably my WCC is almost always low to start with, hovers around 4-5. Last year I had severe neutropenia (lack of neutrophils) brought about by methotrexate which I had been on for 10 years! Many uncontrollable infections followed, the methotrexate was stopped.

I have had RA for over 23 years, sometimes well controlled, other times not. I too am on Leflunomide (plus Enbrel, prednisolone, naproxen), failed on it once but doing a second round now!

RA medications vary greatly in how they deal with the disease. There are many options available to you but often after two failed DMARDS, and if the RA is moderate to severe, you will be considered for an anti-tnf therapy such as Infliximab, Humira, Enbrel or Cimzia. Alternatively there's Sulphasalasine or Hydroxychloroquine, or even a combination of drugs.

Do let us know how you go on. Hope things settle down soon

Lyn x

[Hidden]

people should be supplied with a blood test monitoring booklet for dmards.. enbrel is still classed as type of dmard please ask your rheum team for a "generic blood monitoring booklet". I have one its says shared care on the front as my gold injections are done at the gp surgery

[heatherp]

good to hear from people who have been battling with this for so many years and to hear their experiences with these meds along the way! i think that at this stage I may battle to get onto anti-tnf treatment at this stage because my main issues are in my feet! i have had continued pain and inflammation in my right foot that has got worse and worse despite two steroid injections. the left foot is now starting too, however these are the main joint problems and I believe feet aren't taken into account when calculating your DAS score for anti-tnf treatment? i have flare ups in other joints at times worse than others but most only last for a few days at a time, so it's my feet that are the worry....

on a different note, another bit of advice / thoughts needed! with low blood counts like these what would any of you do with regard to going abroad? We have a holiday to Spain booked for next week (has been booked a while) - I have another blood test on Thursday this week and the holiday will very much depend on that outcome. I know I can ask the doctor, but wondered what any of you would do in this situation? sorry about all the questions - this started as one!

[Hidden in reply to heatherp]

Not what you want to hear, but I went to Cyprus last year when I was having problems with low neutrophils, had a huge flare and ended up with serious problems a few days in. The doctor had never seen anything like it and was totally stumped! I had taken extra meds with me but I got some additional steroids from him and took large amounts until it started to subside!!

I would never do that again! The effort to actually get there, through airports, hanging about places, managing in an unfamiliar place with the problems I already had was just too much, sadly! Been abroad every year for the past 16 or so, last year was spoilt, this year we are not going away

I have written a couple of blogs about 'DAS' and 'FEET' if you want to have a look!

Lyn x

[heatherp in reply to Hidden]

oh dear doesn't sound good! i do also need to check travel insurance policy - it's an annual policy that renewed a few months ago, so need to check I would be covered for things like this! I am having a steroid injection the day before leaving, so am hoping that will help too. Funnily enough, possibly as my bloods have been lowered, my foot that has always caused problems is feeling a lot better today all of a sudden! Hoping it lasts, but I think it's because i have been taking it very easy this week...went away for a long weekend back in April and did suffer after that!

I will definitely check out your blogs re DAS and FEET!

[Hidden]

depends on how bad your are>? whether you have holiday insurance and more importantly did you declare your ra.

. I had a short break to torquay.. but having swapped meds and been poorly had taken out insurance for uk!! for 11.00.. was asked if the ra was controlled/stable.. I Err said yes!!, er.. these things are hard to define,, wasnt that well but went away anyway,,.. but was in uk.. if you are v bad abroad might be risky.. eg can you sit on plane for 3 hours

some small airports in uk and spain use steps not ramps.. can you manage these?.. holidays are beneficial but we have to be practical..I havent been abroad since diagnoses. my disease was only controlled for seven months in the last 2.5 years...have had to cut my hours too as busy, stressful, job in a hospital pharmacy.. guided by pharmacy code of ethics signed up to this on my registration.. only fit to practice part time.. my patient safety to be considered.. regards work

[Hidden]

This is the second time i am of methetrexate and plaquinel. Doc said white blood count too low. I have missed two doses now and i am starting to feel quite sore again. due for more blood tests on Wednesday so i am hoping things will be ok by then.

I was feeling well and dreading going back to the pain i had . I'm sure they will find something else if i cant take the methetrexate . Reading all your posts help a lot.

[Hidden]

Hi Jacksnanna

They will find something else Im sure they just need to find whats safe and what suits us best.

take care

fiona

xx

[heatherp]

Hi again - I thought I'd just give an update on this post as I'm amazed at how things can change in one month! As per this post, a month ago it was touch and go as to whether or not I could continue on leflunomide due to really low, and continually decreasing white blood counts (after coming off mtx after only 6 weeks on it for the same reason) ! Was worried about my next options...

We decided to continue with lef, went on holiday (had a steroid injection the day before that), and when I came back WBC had increased a bit to normal levels (from 3.4 to 4.3). Had my next blood test end of last week, and found out today that WBC had increased to 5.1! So that's a 50% increase in a month and the highest my WBC has been since first diagnosis back in Oct last year! I'm amazed at how these things can change so quickly for seemingly no reason? My lymphocytes are still low at 0.49, but doc has always said that that isn't serious if they are the only white counts that are low!

But guess I'm happy I continued, and hope they stay high!

[Artsymom69]

Hi. I'd check w your primary too. as a safeguard. But rheum is usually up on the meds, and where things should be at etc. good ones anyway. 😍 I've been on mtx since beg of June.. I'm doing injections, on 25mg weekly. My numbers continually drop.. but I was not in 'Normal range' to begin with, I just just below it when we began this journey. But in August lots of numbers had dropped... and yesterday had them checked again... and ten numbers are off. My WBC is lower than yours, RBC low too.. along with neutrophils. And some others, Then some are high.. which ring bells as well.. so I go soon back to her. All in all I feel pretty good as the tiredness has left finally. But body has its moments.

I hope you can find a good solution for you... I do know that eating healthy helps a lot and getting enough rest. I try to sleep whenever I can... just like a little kid. Haha. Hang in there. It'll get better.

[mainstreet]

I am having the same issue with Areva/leflunomide. I have been on it for 6 years and it has been treating my RA very well. A few months ago my white blood cell count dipped into too low and we tried cutting the dose in half, I had been taking 20 mg and then tried 10 mg. My WBC count went back into normal range. But now after 3 months of taking the 10 mg dose, my RA symptoms are back. I have tried several of the oral medication for RA and now my doctor is wanting to start Biologics. So, I don't have suggestions, other than cutting dose in half. But if full dose isn't helping then half won't. Though it can take up to 3 months for it take full effect. I am taking 7.5 to 15 mg of mobic a day as needed to help me through this period. that's not a long term solution but helps me be comfortable in the mean time.

[KittyJ in reply to mainstreet]

Hi mainstreet, not sure if you realised but this post is 9 years old so you may not get a reply from the original poster 😊