Unsure of new medication offered

Jca

Hi. 👋 I’ve just come out of hospital after a five day stay. I was on my 4th week of taking sulfasalazine, my 2nd routine 2 weekly blood test showed that my white blood cells were at zero and I had to make my way to hospital, where after a gruelling 24 hours on A and E I was admitted to a single room and neutropenia was confirmed. My rheumatologist now wants me to start after a couple of months break a drug called Methotrexate. I’m so scared to try this in case I have another drop in blood count and have to be admitted again to hospital. Is there anything else I could ask for injection/ steroids??? This is just so worrying…. I have inflammatory arthritis and osteoarthritis of the lower back. Thanks ❤️

Naomi33

Morning @Jca

So sorry to hear your concerns about medication and neutropenia.

Have you discussed other options with your doctor/consultant or do you have someone who could ask for you ??

I am sure others will connect with you soon.

Best wishes @Naomi33

Jca

Yes I’m going to ask rheumatologist when I see her next month, just wondering what others had experienced on this new drug they’ve suggested… Xx

MrDJ

Hi @Jca

so sorry to hear about this.

Its really difficult for us to answer as what works for one doesnt always work for others but i must say ive not heard about your side affect before. now im not a doctor but have worked in nhs xray for 43 years.

It took many docs in multiple hospitals 2 years before they found what worked for me best.

Now the tablets. Back in 1985 i was put on 6 sulphasalazine a day and was told it would be short term. 6 a day continued until 2001 when i was also started on methotrexate 20mg once a week and also a 6 weekly anti tnf infusion drip. they then dropped my sulfasalazine to 2 a day and been on that ever since.

The only side effect ive had from sulpha was turning my pee yellow.

Actually the only tablet ive had to stop after 38 years was a NSAID anti inflamatory tablet 6 months ago when i had what was thought a cancer scare but turned out those tabs were rotting my gut. Theve now started me on a similar cox2 tablet but ive still had stomach aches since april.

As youve certainly been through the wars lately i would ring my consultants secratary up explaing whats happened and if you need to see them sooner than a month. Its the norm for secs to receive 20-30 calls a day (at my hospital anyway) for earlier appointments.

Steroids are great for pain but also have side effects but really only mask whats happening in the background.

good luck and keep us posted.

Arciere

Hi @Jca

Sorry to hear about your experience - it must have been worrying.

Methotrexate seems to be common going by the posts I’ve read here over the last year or so. They started me on it before I moved to Sulfasalazine - I think they (Doctors) try different things to see which has best effect for your individual needs.

Someone else on here recently gave advice about being politely assertive with your specialist about what medication you are prescribed - I think that is sound advice. I always felt like time at the appointments went really really quickly, so I did start making notes on my phone with questions I wanted to ask, to ensure I didn’t walk out without asking what was on my list. Don’t let them rush you in the appointment !

I also found my local hospital’s rheumatology advice line really helpful for things like pain management and medication questions, so maybe look to see if there’s on at your hospital.

You asked about other things you can ask for - I did find oral steroids to be very helpful - Prednisolene - and steroid injections also helped when I was at rock bottom, although they wore off quicker than the tablets I thought. I did also use prescribed Naproxen and paracetamol.

Hope this helps

MaryL44

Hi @Jca Sorry to hear what a tough time you've had. I have been taking methotrexate for some months and have had no problems at all. However I know we are all different and what works for me may not work for you - particularly with RA.

This section on our website may help with your discussions when you get to see the rheumatologist:

https://www.versusarthritis.org/news/2023/june/how-can-i-prepare-for-a-doctor-s-appointment-if-i-have-arthritis/

Also, do check back here regularly to see what advice our community are able to give you.

Mary

Jca

Thankyou all. Yes I’m used to the rheumatologist and I always ask lots of questions. Apparently this is a rare thing that happened to me and sulfasalazine was just rejected by my body after 4 weeks. Obviously I feel at rock bottom now and I’m sure the drug just being stopped immediately must have had a big effect on my body but obviously they needed to do that. It’s just all worn out my body with the hospital stay etc and everything else that has put into me since. I will give it a few days of rest and will then speak to my rheumatologist helpline nurses, who are helpful. Thankyou for your kind words ❤️❤️