Iām Jenn. I am from Vancouver BC and I was diagnosed with PsA at 30. Since then I have collected a few more autoimmune diseases I wish I hadnāt. Hypothyroidism, inflammatory bowel disease, and diabetes. Iāve been on Humira since 2007. Initially it put me into a full remission. Itās not working as well as it used to unfortunately. My psoriasis is back with a vengeance and because the Humira controls my joints, no one is wanting to add or change anything.
I own my own artisan business. I make and design silver jewelry. Unfortunately during Covid19 my business has dried up as all my markets have her canceled. For now, I am making and selling masks for donations to my favourite charity. I love animals and I have 2 beautiful golden retrievers, Jacob is 4 and Sophie is 2. They keep my husband and I on our toes.
Looking forward to meeting and talking to people that have the same subtype of arthritis as I do. I am always the odd diagnosis out when I am in treatment. Everyone else has primarily RA or Lupus. Itās rare to meet someone else with PsA.
Sorry you needed to find us, but so glad you are here!
Congratulations about getting such a good innings out of Humira - nearly 13 years of good response was good, even if itās now time to move on. Itās sure a complex one when there are multiple autoimmune issues to deal with though.
A gastroenterologist has just formally added inflammatory bowel disease to my list, so the Rheumy has now decided to remove arthritis of any type, and just call all the joint stuff extra-intestinal manifestations of Crohnās.
Sigh. I donāt really believe it, but Iām too tired to argue. I had good results from Humira too, though not for as long as you. Then Cimzia, and now apparently Iām moving onto Stelara. Rheumy insists that this type of Crohns - type arthritis never results in physical damage (though hasnāt bothered to actually image anything), so I think now the Gastro will likely lead the treatment. My psoriasis has always been very minor, so Iāve never collected a dermatologist.
How do all your specialists communicate? Do you have a dermatologist who can go into bat for you in terms of quality of life with regards to your psoriasis?
Welcome Jenn! I will admit that while I was reading your post, I was definitely thinking of Jen75, so Iām glad that she jumped in.
Iām glad that youāve joined us here. And as the daughter of a couple with 4 golden retrievers, Iām a little bit disappointed that you didnāt include any pictures yet. Personally Iām a cat owner, and have four. My cats have been keeping me extra good company while Iām recovering from surgery, to the extent that my husband has been accusing me of hoarding them.
these two were with me last night when I couldnāt sleep.
The jewelry business is probably a good match, as you can set your own schedule. Iāve dabbled in making ring splints for myself, and will be helping a friend out with some for herself.
Unfortunately they are not that good at communication with each other. My GP holds everything together. Heās amazing and unfortunately retiring at the end of September of this year. Thank heaven heās found a doctor to take the practice over but Iām worried about starting with a new GP. One- the new guy has huge shoes to fill. Two- I take low dose narcotics and I very much want to stay on them. I worry with a new GP that the first thing theyāll do is a medication review and taper me. Over here in Vancouver us chronic non cancer pain patients are the lost souls of the opioid epidemic. Government has decided that itās not fentanyl laced drugs to blame, its doctors giving fakers like us opioid medication. Itās wrong, many I know are falling through the cracks and even surgical patients are not getting decent pain relief anymore. So, I guess I wait and see what they want to do. Iāve been on them 10 years, stable dose that has actually gone down in the last few years because they forced me to taper down as low as possible against my wishes. I am an artisan and the Tylenol #3 enables me to use my hands longer with less pain. I donāt want to give up my art and crafting. So weāll see how it all goes.
My ānameā is all to do with mucking out farm animals (pre PsA) and thankfully nothing to do with my bowels - yet anyway. Some PsA meds have occasionally messed them up though.
This far I just have PsA for the past 4 years - Iām in the UK so under a not too dissimilar type of health service to you. You sure have got quite a long time from Humira. It surely must be time to change it? Iām on my 3rd biologic now. Sadly Humira was one that messed up my bowels for the 8 weeks lasted on it.
Anyway I just wanted to say hi. Iām a total fan of silver jewelry and I have a wonderful black lab called Freddie whoās 4 years old now. He arrived at the same PsA hit me, poor love. Iām afraid itās too early in the morning here for me to work out how to upload a picture of him! But Iāll work on that.
Iām glad to hear youāve had a good GP holding it all together - at least youāll have some reasonable expectations you know you can hold the new one to. I hope that works smoothly, and Iām hopeful too, that you might be able to taper off those painkillers not because the docs want you to, but because new meds might give your hands a new lease of life for crafting
Gorgeous smiles on those pups! I wonder if I am showing my generation by not even blinking at āinsane in the membraneā Or maybe itās a taste in music thing? Of which mine is a bit odd . @Sybil it is from a song popular in the early 90ās - I would have been at Uni and pretty sure I half-remember (too much beer) dancing to it.
As a Psa sufferer there are much of what you wrote that I can relate to. Not exactly the same but similarities. I had a multi nodular goiter in an enlarged thyroid removed about 3 years ago. I suffer from Colitis (inflammatory bowel)years of not being diagnosed until I went to the emergency at the hospital and a scan was done and it was diagnosed. Six months for the bleeding to stop and now it has settled down. Psoriasis and PsA flare up right now. I am in my 3rd week with Shingles. After a year of making jewellery with glass beads or natural stones I started a course in Silversmithing and only completed a ring, I was so disappointed that I couldnāt complete this course due to my health problems and having to move. No more markets and I physically could not manage any longer. What about selling on line. My jewellery is in a storage shed but that is what I plan to do. I love animals and no longer have a pet of my own but every day my sonās dog comes to visit me an American Staffy who is so well behaved and gentle. I do hope that the new Doctor works out for you. I am still sifting through a large clinic of GPs to find a doctor that understands PsA. I had a Telehealth consult (Australian phone consultation with Doctors - to assist with COVD 19) last week was for medication for the Shingles which had already been seen and diagnosed by another Doctor and at the Emergency at the local hospital on a Public Holiday The phone consult was with a new Doctor who seemed really good so next appointment I will check her out. Thanks for sharing your situation. Your not alone here and there are plenty of us who understand what you are going through.
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