RA unsafe white blood count and back to square one, devastated

[sausagefingersandtoes]

N/C been on here for years but this could be outing to others I know are on here.

So I was diagnosed nearly 2 years ago. It was really tough process as I'm sure you are all aware.

Christmas Eve I received a call from a rheumatology specialist, not my own as she was off, advising me my white bloods had dropped to a really unsafe level again so they have to advise me to stop taking my meds with immediate effect. Which was Sulphasalazprine.

So i'm supposedly under dual care with the hospital and the doctor, which I'm discovering really quickly it equals to neither wanting to take responsible or accountable for anything.
I had an appointment with the doctor today, and very much not like me, I got really quite upset (crying..a lot) as I'm in lots of pain and want to do all the great stuff we normally do with our very amazingly active toddler.

The doctor then gave me naproxen but advised that he really didn't think it would be strong or effective enough to help, and the rheumatology department advised they would now be reluctant to put me on methotrexate (as it's the same 'make up" and will cause the same issues of suppress my white cells too much ) and I can't go back on sulphazalaprine. (I refused methotrexate originally as of how harsh it was, both my mum and Aunt suffered with RA and PsA)

My DH has been out to buy vilatrol hand gel, which helps for all of 10 mins, so I'm sitting here in agony with sausage fingers and toes, swollen knees and ankles and a bloody headache not knowing what's next.

Has anyone got any advice? (Yes I will speak to my specialist on Monday I'm just asking for personal experience. just for all the 'we are not doctors" don't ask us to diagnose" start.

Surely they should try methotrexate to see rather than just dismissing it, or am I just wanting it to managed again and being unreasonable ?

Has anyone had really low white blood counts and had a good resolution or had to swap tablets with good results or any advice really or things to try

I'm just sad that I thought it was managed and now I feel like I'm back to square one, in pain and a bit clueless. (Sorry if this is a bit of waffle )

Really the Rheumatology team are best placed to advise the course of action. However, some teams are better than others. I was on sulfasalzine for a long time, hated the stuff. Had lots of side effects and it didn’t work all that well. Switched to MTX and it has been a world of difference. Fewer side effects and RA/PsA under control. Couldn’t the specialist nurse give you a steroid injection or some prednisolone?

I always seem to have marginal LFTs but (on both sulfasalzine and MTX) but the rhuemy team seem ok to re-baseline. I did have a white blood cell problem once on sulfasalzine once. I felt like shit. Nurse told me to stop treatment and they put me on prednisolone until my CBC was normal. Then restarted treatment

The rheumatology department is not open again until Monday so will be ringing then, just wanted a to see if anyone has experienced it in the mean time, and it was them who told me to see the doctor to try naproxen.

No they won't give me a steroid injection as it would inflate my white blood count and they want to see what happens to them "naturally". I suspect it will be the same as the other times they have stopped treatment, my white blood count will rise)

I felt nauseous to start with on sulfasalzine,but it settled and managed my condition well for nearly 2 years, but it seems to knock my WBC down far too low now. They are just not willing to let me go back ion them after stopping treatment and restarting and them just dropping again the next month.

I Feel like just starting to chop limbs off after this long without meds. I haven't come across prednisolone so will have a look into it if they are not putting me on MTX or sulfasalazine.

Thanks for the response , it's much appreciated.

I've not had blood count issues on methotrexate, sulfazalzine or hydrochloroquin so cant help with that query im afraid. I'm on sulfazalzine only just now.

But I've had quite a few general flares which affect multiple joints. A few things which help. Good sleep at night and a nap during the day if really bad. Hot bath or shower. Hot water bottles. Diet - for me bread and processed wheat like pasta seem to make everything worse. Potatoes can too. Natural yoghurt, vegetables, soup or curry including turmeric all help. If I am feeling very rough I will make a kind of spicy soup including tumeric, and cumin and it helps. I know the science is still a bit unclear on all this but It is helping me. I've come off the mtx entirely (it had nasty effects on me including on my mental health) and I'm on sulfazalzine only.

But frustrating as it is best thing is to rest right now.

There are lots of options now, including biologics if necessary.

I have loads of experience with this as my white blood count (particularly neutrophils) is naturally on the low end of normal so doesn't need to drop very far before I'm in the danger zone. I have tried methotrexate, leflunomide, sulfsalazine and hydroxychloroquine in various combinations and am currently on 12.5mg injected methotrexate, which seems to be working on the symptoms and not affecting my WBC too much.

My rheumatology team have been great and have been prepared to let my neutrophil count drop lower than they would normally like before I need to stop the mediation (when my GP was involved, they were more cautious). I don't think I"m any more susceptible to infection than the average person, but I have had the fear of God put into me about sepsis and had to get antibiotics a couple of times for very minor things.

I find that I can cope with having RA when everything is stable and under control but as soon as something goes wrong with the treatment, even if the symptoms don't come back immediately, I go to pieces, so I totally get how you feel. I have found that informing myself and going to my rheumatology appointments with a plan for what I'd like to do helps with this as I don't feel so out of control.

Hope your appointment was helpful - happy to answer any more questions if you need.

bigfatfeet thank you so much for your experiences.

They have put me on naproxen which is near on useless, so I'm in full throws of the full effect of it, swollen and acing and really not very happy.

They have however arranged for me to have a steroid injection today which will be great in the short term and I will feel brilliant. They have also brought forward my specialist appointment to the beginning of Feb.

I will definitely be asking for methotrexate injections if they refuse the oral form.

Can you ask them about biologicals?

I have OA not RA, but like you diet can really affect me. Potatoes and all the nightshade family, so tomatoes, aubergines, chilliest, peppers and goji berries, you may want to avoid too.

I'm surprised they won't try you on the methotrexate. I had similar problems with white blood cells on sulphasalazine, so instead I was switched to methotrexate. I was anxious over the side effects and its strengths but I've had no issues. It hasn't completely resolved things for me but it has helped massively.

How are you OP? Did the steroid injection help?
I just saw this thread and it's all very familiar. I was taken off hydroxychloroquine and am in the throes of the worst flare I've ever had. Barely able to walk downstairs. I had a steroid injection which has reduced the inflammation a bit but am still in a lot of pain. Ibuprofen at double the normal dose was helping until I realised it was the cause of my diarrhoea and nausea. Now on Naproxen which is kinder to my stomach but not relieving the pain as well.

Oh it's been a long and stressful journey, the GP was appalling I'm allegedly under dual care from rheumatology and him. He refused to administer the steroid as "I could potentially walk out and have a cardiac arrest with the volume requested" I explained I had had it before and could he please refer to the information and request sent by rheumatology specialist. He didn't and refused and I left in floods of tears.

So another week and half wasted, crying trying to get out of bed and look after my beautiful toddler, who thankfully is a dream but it was so hard.

As soon a si left the doctors, I rang my rheumatology department who were brilliant, my specialists assistant, explained she had PA arthritis which displays the same as RA so she completely understated where I was at, she explained they are both treated the same so she knew there would be good options, made me an appointment for the following day.

She gave me my steroid injection and started me on new meds which are leflunomide which are so far great , I have to be weighed and my BP taken every 2 weeks and bloods every 2 weeks.

We just have to hope that my White bloods stay ok and my weight and BP doesn't change.

How are you doing now ?