Not sure about my experience with the rheumatologist, is any of this unusual?

Posted Mon 18 Nov 2024 17.53 by zan24

Hi, I was diagnosed with psoriasis and PsA just under two years ago, I'm in my 30s. Over those two years, I was started on methotrexate 15mg, it helped initially but then became ineffective after a few months. The rheumatologist then added sulfasalazine 500mg which didn't make much difference. Then, the methotrexate was increased to 20mg. This helped a lot but after a few months I started getting flare-ups nearly monthly. So far, so good. I used to have monthly blood tests which showed everything was fine. The problem began when my blood results showed my platelets were low (below the reference range, so was displayed in orange). The physician associate lowered my methotrexate dose to 15mg. This made my flare-ups really bad and increased its frequency to nearly biweekly. I had to have blood tests every 2 weeks too. I was on 15mg for around 5 months now and my recent blood test showed low RBCs and eGFR. I was concerned about the side effects and the ineffectiveness of methotrexate at 15mg. I contacted the physician associate, They said the eGFR is only slightly lower and said to continue taking meds as normal. I pointed out that 3 different blood parameters are now stated as low, but they said they'll refer me to haematology department. I argued politely, that at the therapeutic dose, methotrexate is causing issues, but at lower doses, it might not cause as much problems but it's not effective. I wanted to try different medications or a biologic. They said because my PsA score was 3/5, they cannot escalate to biologic. I told them I had frequent flare-ups, stiffness in the morning, stiff neck, etc but they kept saying during examinations they didn't see any major swelling. I'd like to know if anyone's been in similar situation; what other medication combinations you found helpful; what are some possible options; and should I approach private consultants to prescribe biologics and if so, am I then able to get it on NHS afterwards? Iv'e read some good reviews about biologics but my treatment has hit a brick wall and seems like I'm going to be on this barely effective treatment regime for a long time. They aren't willing to try anything different. Thank you in advance for any information.

Posted Sat 23 Nov 2024 07.18 by OhNo_NotAgain?

I don't know how easy it would be for you to do this, but I would insist and fight to see a rheumatologist again. A Physician Associate could have a minimum of 2 years medical training, far less than even your GP would have, and diagnosis of psoriaisis and associated conditions will not be a part of that. They will basically be scoring your condition as you have described, and following charts/spreadsheets, with no clinical judgement based on experience of seeing and treating other patients with your conditions. I cannot say if the NHS would continue to give you biologics if first prescribed by a privat consultant. This might depend on the laocal NHS and their prescribing rules.. If you cannot get you local GP proactice to refer you, it MIGHT be worth paying to see a consultnat privately to at LEAST see what they say. But I would suggest trying to be forecful with the NHS first, even make a nuisance of yourself.

Posted Sun 24 Nov 2024 00.17 by zan24

Hi, thanks for your response. All the appointments with the rheumatology department, to date, are either blood tests or with the physician associate, other than those two times I actually saw the rheumatologist. I contacted the hospital earlier about seeing the rheumatologist, they're quite stubborn. If I asked my GP to refer me to a different hospital (one that's much larger), I'd be able to see a rheumatologist. Maybe there's benefit in getting a second opinion, but I'm not sure if my current medications would be stopped/discontinued because I would not longer be under their care. Do you have any experience about this? My GP seems like they would continue to prescribe, as long as there's regular blood tests.

Posted Sun 24 Nov 2024 07.31 by OhNo_NotAgain? (edited Sun 24 Nov 2024 17.27 by OhNo_NotAgain?)

I do not know for sure, but I would expect that your GP would continue to prescribe and not stop simply because you saw a different specialist. I feel you absolutely need to see a rheumatologist and not just a PA seeing that your symptoms are changing. I would have expected that your GP could insist on referring you to a rheumatologist rather than a PA at the hosdpital. , based on changing and worsening symptoms, so that YOU are not having to try and argue with the hospital.

Posted Sun 24 Nov 2024 21.31 by zan24

Hi, I'll try to contact the GP and get referred to a different hospital, preferably a larger one because the current hospital cancelled my appointment and re-booked it for Sep 2025, which I thought was outrageous. Earlier, I tried asking the GP to write a letter to that hospital, to ask if they could bring the appointment forward, but the request was refused. The excuse was that there is a national shortage of consultant rheumatologists and they didn't have such capacity. Anyway, fingers crossed.

Posted Tue 26 Nov 2024 11.04 by OhNo_NotAgain?

I can only wish you good luck. It almost sounds as if you need a different GP also.

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