Low white blood cell count and sulfasalizine - again

[Brychni]

Hi all

I still have my unused prescription in the kitchen cupboard with instructions from the GP not to start taking them because my blood test showed WBC 3.9 and a follow up test at 3.8 and it shout be 4.

I've left several messages with rheumatology who did call back once when I was out with the dog and told my husband I should have left my date of birth! Which I did - they must have known who I was to call me back though! Very strange. I don't understand it because when they decided I should take sulfa. the rheumatology nurse was very stern with me when I suggested perhaps I should give the hydroxychloroquine a bit longer, she said I should start the sulfa. asap.

Anyway, when I last posted about this I had several replies saying that their WBC is consistently low but my question is has anyone else specifically been taking sulfasalzine with low WBC? Just to recap, my initially vague symptoms are becoming more 'classic' every day; literally. I've had some nasty episodes and had swelling in both hands, wrists and particularly my middle finger on the right hand is now 'deformed'. My toes, feet and ankles are in a similar state and I have lumpy bruises in my thighs and a massive one on my ankle which is sort of reddish brown and very warm. I've communicated all this in my messages to rheumatology since the flurry of panic over the sulfasalazine prescription - it seems like they've lost interest.

[bubblyalex]

I would insist on a consultation. You need proper answers about why your doc is saying don’t take it. Proper answers. Have you tried emailing rheumy?

[Brychni in reply to bubblyalex]

I've only ever been given a phone number which is just a message box. Is it normal for changes in joints to happen so quickly?

[bubblyalex in reply to Brychni]

My hosp have an online log in website where I can see my test results and so on. It has a send a message facility. I’m afraid I am a total novice at this RA 😏

[springcross]

HI Brychni. What a pain the rear. You've been left hanging haven't you and I would definitely do what bubblyalex is saying and insist on a consultation. Have you been taking photos of your hands, wrists and finger? If not, I would do it. Can you not go back to your GP and tell him/her what is going on - maybe he/she could contact your rheumy department for you. Good luck with it all, I hope you get some answers soon. x

[Brychni in reply to springcross]

yes I have pics and the GP saw the weird bruises - more like large reddish brown patches and red hot - the last GP I spoke to on the phone said that rheumatology would 'write' to them! I find it staggering after the panic to get the sulfasalzine prescription to me.

After months (years) of not fully understanding symptoms I think this must be a 'flare'. It's been impressed upon me so many times now that delay in medication can cause irreparable damage and my middle finger, and big toes have really changed shape. Walking is becoming difficult. Everything starts to ache, then sharp pains and then the heat. I just can't believe that it can happen so quickly.

[springcross in reply to Brychni]

You really do need to insist that you have an appointment. Ring them tomorrow and tell them exactly what's happening with your big toes and middle finger, also that you're desperate as you're in so much pain. It really is ludicrous that you can't get anything done. Do you know your consultants name? If you don't get any joy with the nurse tomorrow, contact his/her secretary and explain to her what's going on and that you realIy need to see someone. I really feel for you. Good luck. xx

[netball7]

Hi I have had similar problems with sulfra along with spikes in BP which I was told wasnt related but when increased or decreased my BP matched so in the end they kind of agreed so now after many unpleasant years and different combos I'm starting biological drugs. I hope you get sorted soon best if luck. Persistence on my part was the key..