Miss Pinny
Hello,
I wanted to show the winding path I have been on in order to find a diagnosis of PsA or as we know it psoriatic arthritis.
I presented with Crohn's disease first and I still tackle this beast today. When I started to get joint pain the doctors put it down to Crohn's arthritis.
I developed psoriasis at 17 years old. By the time I was in my 40s, I started developing swollen Achilles and plantar fasciitis. I wasn't able to walk. My knees and neck hurt, but they were not very swollen. The usual inflammatory markers (ESR, CRP, and WBC) were not all raised. The only raised blood markers were ESR and MCV – and maybe a CRP reading of 40. My ANA was through the roof. I now know that an MCV – enlarged corpus red cells indicated chronic inflammation. When I started my journey this was not known to me or the medics didn't pick it up.
An official psoriatic arthritis diagnosis
It wasn't until 2018 I was officially diagnosed with PsA. It is important for medics to observe you clinically as well as through blood results. I know that PsA patients do not normally have high inflammatory rates, or so it seems in the beginning. I am sure some people do have higher rates, but I haven't really.
Managing my PsA symptoms
My PsA symptoms are fatigue, joint pain, nausea, insomnia, joint pain/damage, low mood, and tendon pain. I have enthesitis as well as PsA. Enthesitis is inflammation in the tendons where they attach to the joints. The only medication that eases this when it is severe for me is a low dose of diazepam at night. There are medical papers in Nature proving its effectiveness. I do not condone long use of diazepam, but when my enthesitis makes me feel like I'm walking on crushed glass, I take one tablet at night to help me sleep.
After I was diagnosed with PsA, everything seemed to snowball. I had to have three surgeries close together. Two on my foot and one on my left knee. It was hard. I got through it.
I am currently on a biologic medicine called Humira and I am finally feeling relief from all of my symptoms. I cannot tell you the joy I feel when I wake up and I can get up without hobbling for 20 minutes. I actually welcome the day instead of dreading it and wishing I could just sleep my life away.
Finding the right treatment plan with comorbidities
Due to the fact I have Crohn's as well, it appears the Humira is working on my joints, but I am still having spontaneous Crohn's flare-ups that flatten me for a few days. I am meeting my gastro this week to discuss which TNF Alpha Inhibitor might target Crohn's better and then I will meet with my rheumatologist to discuss the outcome of the gastro appointment.
I tried every drug going e.g. prednisolone, azathioprine, mercaptopurine, sulfasalazine, and methotrexate. I am finally seeing results with Humira. It has taken me ten years to get here. Do not be discouraged. I was offered Infliximab in 2006 and I was too scared to take it. One important suggestion I would like to make is to be assertive when you speak to your rheumatologist. Do not downplay your symptoms. Keep a diary so you can remember the days when you can't get out of bed and what your symptoms are. In order to be prescribed Humira, one has to have a minimum of three swollen joints. This may be different in your county, so don't take my word for it.
Total knee replacement
I had to have a total knee replacement in 2020 because of the damage to my knee. I stupidly fell onto concrete not long after the surgery and lucency appeared where the bone meets the prosthesis. We believe I have aseptic loosening. In short, the bone is coming away from the prosthesis and this is causing bone absorption and minute particles of the prosthesis are traveling freely in my bloodstream and my immune system is reacting to it. I am due to have a SPECT-CT next week and that will show us the microscopic changes in the bone. Unfortunately, recent X-rays showed the lucency is progressive. Ultimately, I will have to undergo a complete TKR revision. This was a shock to hear. If I had not done too much post-TKR surgery, I wouldn't be in this place. I am facing it now and getting on with it.
I know that I have to have patience, a good medical team around me, a sense of humour, inner strength, bloody-mindedness, set intentions, follow-through, and not be intimidated if I disagree with a medic. Explain my reasoning and request an answer.
Becoming an active participant in my health
I am an active participant in my health and I am not led by the nose by anybody. Often, medics are overworked and not able to give you all of the reasons why you should take a particular action. Be informed, ask questions, and make decisions jointly with your medical consultants.
Mental health and chronic pain
I have had months of low mood and fear. I wanted to give up. I hated my life. I had no energy and I didn't have much of a will to live at times. I had severe pain in every part of my body and I still pushed myself to get up every day to take care of our child. I finally understood I had to trust certain consultants or I wouldn't get better.
So, above, I mentioned working with your consultants, but it is also really important to listen to them. If you find a super rheumatologist who is very experienced, take their advice on board. I found this difficult to begin with because no other consultant had been able to diagnose me before. It took a herculean effort for me to start Humira during Covid, but I thank God and everyone in between who motivated me to take this step.
I'm happier now and have more energy and less pain. I can exercise, and I am able to do things with my family. I can walk my dogs, I can fit into nice clothes and I'm not hiding away anymore.
Lifestyle changes
Oh, the other thing I have done is get therapy to help with past trauma and the trauma of having two chronic autoimmune illnesses. It has helped me tremendously. Diet is another important factor. I gave up sugar, Coke Zero, and I have been a vegetarian since I was 17. I am not saying you need to do these things, but these things have helped me. I also make fresh vegetable juices stay away from foods that upset me and take vitamins and protein shakes.
I hope this helps someone. Don't give up until the miracle happens. It does help to talk to others who have the same illness.
I wish you all a Happy Easter and I wish you all continued success in managing PsA or anything else.
Take care.
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