Disease monitoring and biologics

Elmbow

Hello all. Wondering how other people taking biologics for inflammatory arthritis are having their condition monitored while they're unable to see the rheumatologist, aside from phone consultations.

Are you having blood tests still?

Has anybody else been sent a questionnaire to score their disease activity, in relation to biologics?

I'm having no blood tests and it seems I've been given a questionnaire instead. I've already been told my next appointment in December will be by telephone.

Thank you.

frogmorton

I wonder why 'they' don't let your GP do bloods and pass the info on to them electronically🤔

Just a thought. Probably most important for you if things aren't going at all well of course?

stickywicket

I think all hospitals/consultants/GPs are doing things in whatever way they can and these are different according to circumstances.

I'm not on biologics just meth and hydroxy. My rheumatologist wrote early on to me and my GP saying leave blood tests for 6 months. In my case that meant June. He rang me in June asked how things were (good) and told me to get bloods done. (My GP does them.) I did and my iron levels were low so GP put me on a month's worth of iron pills and told me to get another test when I'd finished them. I did, test was fine, iron was stopped but I've to have another test in another month just to check.

No questionnaire.

(I'm in Scotland.)

silverfoxxxx

My GP has been doing my bloods since day 1, fortnightly through the pandemic also and emailing the results to Rheumy, I’ve had a video call with Rheumy and a few phone calls with the Rheumy nurses when things haven’t been where they should be.

Elmbow

Well my December telephone appointment has now been pushed back to the end of March. By then it will have been well over a year since my last blood test. The rheumatologist wanted to see me in person in October, but this is all they could offer me.

And the questionnaire wasn't anything to do with my care at all, it turned out. It was part of a personal research project by someone in the team who didn't even ask for consent. If they have time to do this they have time to communicate about our care.

I know these are challenging times for hospitals, I'm not expecting everything to run smoothly right now; but this is kind of typical of this department and the questionnaire thing just reflects how they operate, with little respect for patients. It's just not a good rheumatology department and I've met several people who agree.

Hope you're all well.

Sharon_K

Hi @Elmbow

i have my bloods done by my GP every 3 months but that is all. Not Seen or had contact with my Rheumatologist for a year

Sharon

Ben91

Hi @Elmbow

if you’re concerned about your condition then being persistent is key. I’ve been newly diagnosed and my care has been a bit up and down - however, if I’ve had concerns then I’ve contacted my Rheumatologist and my Rheumatology nurse, aswell as my GP. If you don’t get calls back then you just need to persist.

I started to have a flare up and asked for an urgent consultation with my rheumatologist and the best they could offer was 2 months, so I went through my GP and got blood tests. The results were shocking and that 2 months for my rheumatologist became the next day. The GP, although they can’t really take over your treatment, they can be a great help in getting things sorted.

Ben

Chris66

Great advice thanks for sharing

Saltmarsh

My surgery announced that they would not be working normally for the foreseeable future. So I waited to be informed that bloods, eg, were recommencing. Until I got a peevish letter from Rheumatology complaining that they hadn't received anything from me for months! So then I requested, & now we're back on track for every month. Had an unhurried telephone review with my RA Consultant, prog. for face-to-face 6months.

Best wishes.

Kitty

I have my blood test taken every 6 weeks by a District Nurse who comes to my home. I had a telephone appointment with my Rheumy in November and she was prepared to have an appointment in clinic in December but I cancelled as I can only get to clinic by patient transport, which worried me. I'm on Leflunomide for RA, MTX, and Prednisolone for Vasculitis and the occasional Rituximab, also for Vasculitis. I also had 4 years of Zoledronic for Osteoporosis but now on a drugs holiday for that.

Elmbow

I think most people who take a biologic also take a DMARD, such as methotrexate or sulfasalazine, that has some clearly defined protocols re blood monitoring. So the biolgic is kind of monitored by proxy.

I'm in the relatively unusual position now of taking Humira and hydroxychloroquine, neither of which seem to have any specific blood monitoring requirements - but doctors tended to send me for the usual tests at my six-monthly review anyway.

So I suppose I'm most curious to know if there is anyone else in this position, and whether they are having blood tests that aren't part of other DMARD monitoring. Or if anyone knows what the monitoring requirements are for biologics, if any.

wildflowers

I take Azathyoprine and Benapali and have blood tests every 2 months. As the hospitals are so hard pressed since March the GP has been doing them no problem and they also do the blood pressure check too. The RA team can see the results and I've spoken to them twice no problems at all. Here its the GP who can refuse to do the prescription without the blood tests but I've never heard of it happening.