Changing Consultant

jamieA

Hi,

I'm a 65 year old male who comes from a family of psoriasis sufferers. I've had psoriasis for as long as I can remember on ankles, shins, elbows and head - though it has been in remission for the last 15 years and now is only in my ears. Otherwise I was healthy and walking 60-70kms per week.

In March 2020 I took a severe chest infection and I took further chest infections in April and May and was eventually sent to the A&E hospital where a consultant told me she was fairly certain I'd had Covid in March but she had no means of testing me (since then 2 other consultants have told me they reckon I had Covid in March).

I took a couple of further chest infections before in September my left knee swelled. I was referred back to the A&E hospital where it was drained and given a steroid shot. I was back at the end of October for the same and then again in mid-November.

By late October my hands had swollen and I couldn't make a fist and my shoulders, hips and knees were also painful. At the end of October the consultant at the A&E hospital diagnosed me with PsA and prescribed Sulfasalazine.

In November I was referred to a consultant rheumatologist at my local hospital who told me I had to 'suck it up' (his actual words) regarding the pain I was in until the Sulfasalazine worked or 12 weeks passed. A week later in late November I was rushed to the main A&E hospital with pneumonia due to yet another chest infection but my hands were swollen and all my joints were painful, particularly my shoulders, hips, hands and knees.

I was treated for the pneumonia first then they addressed my joints - I couldn't lift my arms or hold cutlery. I was put on a course of oral steroids - my blood tests showed my CRP levels peaked at 340 during this time. I was also put on Co-Codamol, Naproxen, Omeprazole and Amitriptyline.

I was re-admitted to the A&E hospital in December and again in March 2121 with pneumonia with all the same joints extremely painful. I was also seen at the local hospital rheumatology clinic during this time where I had shoulder and buttocks injections of Kenalog (which didn't help) and was put on Methotrexate. I had further Kenalog injections during my March A&E hospital stay in both my knee and shoulder which helped immensely.

I had an appointment with my consultant the week after I'd been discharged and his opening words to me were 'we can't keep giving you steroid injections' but offered no alternative. I told him I was extremely unhappy with this and told him another consultant I'd been seen by whilst in the A&E hospital had said if I were his patient he'd move me onto biologic treatment sooner rather than later but my consultant said I'd need be on the full 20mg dose of Methotrexate for 12 weeks before he'd consider it - irrespective of my pain levels.

My consultant ended the consultation by agreeing that if my PsA got worse he would agree to another steroid injection. I had this in April - though the consultant had specified a dose that the nurses were not licenced to give so the nurse had to give a smaller dose.

I've complained to my GP regarding my consultant's performance - he has never examined me, in fact he has never moved from behind his desk. My GP has asked for a change of consultant and I've now received a letter stating I'm on the waiting list for another consultant. Meanwhile I'm now taking 149 tablets (Sulfasalazine, Methotrexate, Etodolac, Folic Acid, Co-Dydramol, Amitriptyline and Omeprazole) per week for my PsA which are having limited effect.

Jona

Hi jamieA,

Im sorry you’ve had such a nightmare with your consultant and your health has suffered so much, I too have had really bad consultations you can complain in writing to your local hospital PALs they can put you through via switchboard at your local hospital best though if you put it in writing and ask to see another consultant

good luck

love Jona 😊💪

Lilymary

Hi @jamieA There is a saying, if you get five doctors in a room together you'll get seven different opinions. Treating these conditions isn't a precise science, as every body is so different and the symptoms, and people's tolerance to pain and drugs, and their activity levels, vary so much.

But having said that, I know from personal experience that you will get on better with some consultants than others. My first consultant left me profoundly depressed after every encounter, despite his cheery disposition, as he simply didn't listen and just saw me as an xray image. My second consultant was a breath of fresh air, but who knows which of them was the better surgeon? Given my level of pain 6 weeks post op, it's possibly arguable.

I hope you get your appointment with the new consultant quickly, and that it's a much better experience for you.

stickywicket

You've had a really tough, scary time, Jamie, and I do feel for you.

I would find the recurring pneumonia very frightening. Do they think it's a manifestation of long covid? Or some other cause?

Unfortunately, most DMARDS and biologics can take up to 3 months to work and I think many of us autoimmuners have, at some point or other, been in the 'suck it up' stage. Steroids can help but can also bring their own problems.

I think one problem for you is that both DMARDS/biologics and strong pain relief can be bad for the lungs so you clearly have two problems which are working against each other.

I wouldn't, personally, see biologics as a solution. Many people take them alongside methotrexate and/or sulfasalazine. They are not a panacea though I have twice had non-rheumatological consultants speak to me of them as if they were. 

Wherever you go with this I hope you can find something that helps both problems.

jamieA

Hi All,

Thanks for your replies. @Lilymary and @stickywicket I should have said that the consultant who spoke about biologic drugs was a rheumatologist. I don't know if my recurrent chest infections/pneumonia are long covid but one of the consultants I've seen when admitted did think there may be a link between the chest infections and PsA in that he said PsA can be triggered by an infection.