I’ve not had much opportunity to visit LWPsA over the past year for a million reasons, so I finally decided this morning to login and say hello and hope you all can say you’re doing pretty well! My main concern is I hope everyone either avoided COVID or didn’t have a bad case of it. We were super careful. I was lucky to be able to work from home from April 2020 to April 2021. Currently, I’m back at the office, but getting more and more concerned about the COVID variants that are more contagious. With that, I’m wondering if others of you have talked with your rheumy about an extra booster of the vaccine? I heard Dr. Fauci say that people on meds such as biologics aren’t always developing the antibodies to fight COVID. I haven’t read through all the new discussions yet, so maybe this has been a topic.
Otherwise, I’ve been fortunate that Enbrel is still working for me.
My husband and I grew closer while we spent more time alone—away from the family—for a whole year. Our marriage is better than ever because now we’re best friends. Sounds weird that it took 47 years to get there, but it’s sure nice we did.
I’ve had multiple kidney stones and was referred to a urologist. She gave me the option of going into my kidneys to retrieve some of the stones. She didn’t know how many she could retrieve because if they’re in tissue, she wouldn’t be able to take them out. So I opted out of that. I’ve passed about 8 stones over 10 years—most of them very little pain and only 2 being more pain—nothing I couldn’t handle. Also, most of them have been recent—in the past 2 years. I’m wondering if others of you have kidney stones and if they’re somehow related to PsA.
At the moment I can’t think of much else……there are the normal aches and pains but nothing that stops me in my tracks. There is the worry about retiring and not being able to afford Enbrel once I go on Medicare and a supplement. The last I learned was I’d pay an average of $600 a month, and with the cost of the supplement and other medical costs I can’t afford that. But I do want to retire December 31. I’ll need to learn more about Remicade because, as far as I know, it’s my only inexpensive option.
I look forward to catching up on more of the recent topics and knowing how y’all are doing!
How wonderful to hear from you! And great that Enbrel is still working so well.
And so lovely to hear about you and your husband becoming best friends, nice to have such a positive story in amongst the Covid mess! I imagine being less involved with the rest of the family was an adjustment that wasn’t always easy though?
I’ve been pretty sick, diagnosed with Crohn’s, had a surgery, arthritis flared badly after that, onto steroids, and just finishing that taper now. Luckily Covid has been till now very well controlled in Australia. We are just going into a really risky surge with delta, but I’ve only got two days till my second vaccine dose, so again lucky.
GrandmaJ! Great to hear from you, and it’s wonderful that you’ve stayed relatively well through the pandemic. Kidney stones are no fun, though: they run in my family, but I see to be in the half that doesn’t get thim. My poor sister on the other hand …
I’m keeping busy. Today I am making a slideshow out of an article that tnt wrote last week for a special project we are doing. You’ll hear more about that at some point, I’m sure.
So lovely to hear from @Grandma_J and so glad the pandemic has decent positives for you and your husband. Still trucking along here with Cosentyx doing a good job. And thankfully still working at home, whilst the UK deals with the Delta variant. Keep exploring those options to possibly stay on Enbrel too. Does Enbrel not do a help scheme when necessary? It’s lovely to have you back.
I am in my early 50’s and other than PsA I am pretty healthy. I had been very reluctant to get the Covid vaccine but my new Rheumy was very insistent that I get it a month ago. He suggested that I get the J&J version so that I didn’t have to reduce my methotrexate for too long. I did not have any reactions to the shot, thank goodness.
I was approached by one of our nurse practitioners at work last week and she asked if I would be willing to have my blood checked from antibodies since it had been a month since my injection.
I agreed and a few days later the results were back and I have NO antibodies. After doing a little internet research I found this is typical for people on methotrexate.
If it helps, I’ve been part of a study in the UK about how people with inflammatory arthritis / diabetes / cancer respond to the vaccines and I was told last time I was in to see them that people on Enbrel and Benepali were giving slightly less of a response than a healthy subject but still satisfactory (as a generalisation).
This was based on the Astra Zeneca vaccine.
They did mention one of the biologicals did seem to be noticeably lower for levels of antibodies but just said it wasn’t the one I was on (Etanercept).
@Jen75 so sorry to hear you were diagnosed with Crohns. I hope you get the right med(s) to reduce the symptoms or eliminate them altogether! To be honest, I don’t know much about Crohns, but it’s always something, isn’t it?
@j0nn13 thank you for that—it’s good to know. I’m a little stressed right now because our 36-year old daughter and all 3 of her little kids were diagnosed today with the Delta variant and I was with them on Monday. They aren’t too sick, but still it’s scary—she had the Pfizer vaccines.
Thank you all for you replies and I’m glad to be able to keep in touch more now. My doctor said to have another COVID test because my daughter just tested positive for it today. I had been tested a month ago when I came down with symptoms—sore throat, stuffy/runny nose, cough with congestion. I used Mucinex and that really helped get the gunk out. My COVID test at that time was negative, but I was exposed to my daughter and her kids a few days ago. I still do have mild cold symptoms, but I might hold out for a few days. My daughter had cold symptoms but didn’t think anything of it until she lost her taste and smell this morning. That’s a pretty common COVID symptom. Keeping my fingers crossed I don’t lose my taste and smell—this is too scary!!!
Yes Grandma J, more than anything specific, it seems “it’s always something” oh well, same as any other autoimmune thing really, keep trying meds and procedures and hopefully something works and sticks for a while!
I’m sorry to hear about your daughter and family, though with Pfizer the chances they will have more than a cold are very slim. Hopefully you’ve avoided it, let us know how you go, virtual hugs
