A waiting game...

Hi all, have had a low white cell count now for the last few weeks, went up slightly once but then dropped again. Don't now why as I've not had any infections or anything but it's getting to annoy me know as I can't get to the bottom of it.

Saw nurse last month and decided to have Rituximab again as it's been nearly ten months since my last one. Was a little unsure at first has I've not been to bad RA wise, but like they said "get it before it gets me!!

That was about a month ago now and have been feeling a little of colour since, you now when something doesn't feel right but you just can't put your finger on it. Anyway other familiar symptoms started to show themselves so I booked up a GP appointment, looks like the prolactinoma is showing itself again,even though I saw the Endocrine specialist in April and everything appeared to be "normal"

So on Monday I went for bloods and also had a call asking me to come in and have Rituximab, I explained how I was feeling and said I need to get this sorted first so I prefer to wait until I come back from holidays in July. She said "could be your prolactin levels again as they were 900+ on last test in April!" "What was it again your taking for them?" Nothing I replied. Anyway they reluctantly agreed for me to go in next month.Then this morning I get another call from the RA ward saying "don't take any mtx etc as your white cells are still low!" good job I didn't have Rituximab then I thought.

So now I'm just waiting for more results.

Have had Prolactinoma on and off for a year or so, and in that time have seen four different consultants. Each time I have to go through the same explanation of my symptoms and each time they say "see how they go next time" I admit that sometimes I have a blood test and they come down and the symptoms disappear for a short while but they always return.

I had 2 brain scans which showed a "bulky" piturity gland and was told this could result in a full tumor but they are nearly always benign, bearing in mind this was early last year.

Could this be the reason for my low white blood cells? I wonder. Has anyone else had prolactin level problems? Or now anything about them?

Why do we always have other problems? isn't RA enough for anyone to have?

So know I have to wait for my other results and go back to gp next week, oh well just another day in the world of RA!!

take care

Mandy

[Gina_K]

Hi Mandy,

Sorry have no knowledge of prolactin levels (but will google in a minute). However, am glad you are on the ball and in tune with your own body, I think you know when something not quite right. Having said that I had a low white count for few months and had no obvious sign of infection. Can't remember are you on steroids? this can have an effect on white BC I think (disclaimer).

Mine righted itself eventually. It seems that if you are pro active in your approach you will get to the bottom of it.

Stay well.

xx Gina

[Hidden in reply to Gina_K]

Thanks Gina,not on steroids anymore.Like you say they probably will right themselves but I was just wondering if was connected to prolactin levels.

I'll get to the bottom of it one way or the other!

Take care

Mandy xx

[emandedmum in reply to Hidden]

If you don't feel well then there must be something going on somewhere in there that isn't quite right. I'd keep asking for blood tests for everything 'til you get a result someone is happy to do something about...why they make you wait so long before doing anything I just don't know?! I thought I was getting over the worst of the flare but have been ill with sinus infection (knocked me for six) and now having my feet problems, all related to RA, drugs or both! Not fair is it?! Oh, I do hope you get to the bottom of it soon Mand, the worst thing is feeling rubbish and not knowing why. Big hugs xx

[Hidden]

am sorry mandy its not my field I am sorry I woould just be looking it up which I could do tomorrow get well for majorca ..xx

[Hidden in reply to Hidden]

Yes I'm looking forward to my week away that's why i want to try and get an idea of what's going on.

Thanks anyway Alison,you take care.

Mandy xx

[Hidden]

Sorry Ive never heard off this also, but I too also have very low white blood cells too even when no signs off infection. GP says he is just monitoring it for now but not sure why.

Take care

Julie x

[Hidden in reply to Hidden]

Ok Julie thanks anyway, hope your sleeping better after Alison's advice.

Hope your feeling better too,take care

Mandy xx

[Hidden]

will look up this after noon./ eve. yest was work. followed by looking at dressing (scokless persn here!!) ang getting into bath aids.. jar opem. botttle opreners etc.. being boooked in for full assessment then friend invited me for tea with parents.. prob due to my news re dad a really good friend roast lamb etc very nice.. I am tired had to do my cocktail. slight oramorph top up. will try, I know Gina has been looking up loads lately, maybe she has>?

speal soon

[Hidden]

actually are on your methotrexate? with ritix ?

re cell count, fact.. mine dropped!. with meth to bottem end of tolence(Low) high is better! steriods can RAISE them( please read patient info leaflet from box of steroids its listed under side effects!) fact all people need read patient medication leaflet I know one every reads the boring buggers!! as the steroids one is long and scary as is the methotrexate one! . with steriods my wbc count 8-11

now this is from nhs shire.. result interpretation nhs shared care monitoring booklet so no disclaimer and straight from patient information leaflet..

wbc(white blood cells normal range.. 3.6-11

neutrophils a type pf wbc. normal range 1.8-7.5 time to worry is if you are at the bottem of these ranges

tonight got dla to sort anf french girls coming pre work in fo might be the best I can do tody sorry, mel put on a good link re bloods on someone elses blog re blood tests

best regards

alison

[Hidden]

you must get the " tumour checked mandy!" benign or not .. urgently

[Hidden]

mri or ct scan they way forward!! take no chances

[Hidden]

to clarify methotrexate can cause white cells to drop.. steroids which you say you are not taking raises them typos on my long answer still was waking up from my drug cocktail extra strength didnt sllep well last night.. awake now have had intra venous coffee he he and my day time cocktial inc steroids

[Hidden]

Yo Mand

Bringing up the rear again here just saying what the others have really. You always sound so "in tune" with your body, so there must be something, so bit worrying.

You have enough to contend with so don't be greedy and let someone else be ill (tongue in cheek) and I am only being funny because I know I can't help because I have no long term experience of RA and Prolactinoma (like Gina will look it up) But rest assured I am thinking of you. Look after yourself

Julie xx

[Hidden in reply to Hidden]

P.S. When I re-red this I sound so up myself. didn't mean to think that me thinking of you will be the best thing that can happen!! Oh dear. You know what I mean.. x

[Hidden in reply to Hidden]

I know what you mean Julie don't worry.

Take care

Mandy xx

[Hidden]

julie no you are not at!! all wish i knew more about it too !!havent as yet had chance to look it up endrocrine./ neuro stuff only they the specialists have enough knowledge sadly xx

cos it would be looking it up only I KNOW nothing about this area was wondering if there is a support site?

[Hidden in reply to Hidden]

Hi Alison, have had a search for it but can't seem to find much about it at all. I know the basics of it, what originally started it was an over active thyroid problem which was treated with carbimazole. I though it was returning as the symptoms are very similar irregular periods although no nipple discharge! Was then sent back to endocrine clinic early last year and found it was prolactin levels that were high so was sent for brain scan.Piturity was reported as being bulky and they said they would keep an eye on it but then they discharged me! Early this year it came back and gp went mad as they had discharged me, re referred and was told the same again, will keep an eye as they had come down slightly. This is what keeps happening symptoms keep returning and levels go up and down, and I'm just getting fed up with it and now my white cell count keeps dropping, not had mtx for a few weeks now!

Don't worry about researching it I'll keep you informed when I go back to gp next week,you have enough to worry about.

Thank you for caring

Mandy xx

[Hidden]

proclatinoma..non cancerous.. can be succesfully treated with drugs.. wikipedia.. good medical site.. also for a fee say £10.00 just answer( medical) its manned by qualified docs in america.. credit card ready!!. can get an answer for 10 -11 english pounds if you are stuck xx,

Head physio from my hosp back from some were I never heard of with great tan.(place near magaluff) saw it( the tan) in the hydro pool this afternoon

NHS posters up from. the ... shire... still citing factor 15. . but generous quantities regularly applied.. tis the old N.I.C.E info.. normal skin, on med problems.

. Factor.... 25 or more depending on drug used and skin type for majorca..

I.. hope you get things sorted.. we dont use ritix at shire... I meet the only patient to my knowledge getting inflix infusion today pretty young. thing.. after meeting her ..felt sorry for her.. prescription for domperidone for side efffects , but she told me she on the whole better for it xx. I think she was quite young... less than 30 prob.?. confidentiality applies. so was I lucky not to be diagnosed younger ! disclaimer .... info from public sources on prolactinoma and sun factor

[Hidden in reply to Hidden]

Thank you Alison, like I say don't worry for me you have enough to worry about. Will keep you informed as and when.

Take care

Mandy xx

[Hidden]

Hi mand

As you know we are twins !! I have suspected prolactinoma too and I am taking

Rituximab . Do you think its rItux thats caused the low white cell count ( apart from B cell count ? ) Keep me posted as it may be helpful to me too

Hope it sorts soon

love fi xx

[Hidden in reply to Hidden]

Hi Fi, that is one of the side effects, low white blood cell count as is facial flushing which I've also been having for a few months. Like my GP said though having the facial flushing is a side effect worth putting up with considering how well the Ritux works.

Have to go back to GP next week so I'll keep you posted!

Mandy xx

[Hidden]

Hope you are feeling better xx