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 Today 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.

To take part, sign in or register with us