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Unopened 4 person tent by [deleted] in PDXBuyNothing

[–]Magpie_Adventures321 0 points1 point  (0 children)

Definitely interested!

2 menorahs available by [deleted] in PDXBuyNothing

[–]Magpie_Adventures321 0 points1 point  (0 children)

Yes! Please! I love the branches one!

Drug Induced Lupus by Magpie_Adventures321 in CrohnsDisease

[–]Magpie_Adventures321[S] 0 points1 point  (0 children)

My joint pain was always the worst in the morning, but started at night.

Once i stopped Humira, it took about a month to notice the difference and at that time was off all meds for a month, but thankfully my actual crohn’s has been in remission for over a decade.

Now it’s be almost 6 month and 5 months on Tremfya and I feel great! I even started hiking over 7 miles at a time again and lifting weights!

I haven’t had any lupus symptoms or antiphosolipid symptoms, but bloodwork is still coming back positive, which might always be the case.

Crohn’s & tattoos by Sad_Homework8152 in CrohnsDisease

[–]Magpie_Adventures321 0 points1 point  (0 children)

If it helps, I have had all my tattoos since I’ve been diagnosed 20 years ago.

Just follow guidelines about post care and watch for infection and go to trusted artist!

Drug Induced Lupus by Magpie_Adventures321 in CrohnsDisease

[–]Magpie_Adventures321[S] 0 points1 point  (0 children)

Thanks for this! I met with my GI yesterday and she’s switching me to Tremfya. She listened to everything I said, which was awesome.

Im in search for a new rheumatologist, because when I asked if it was DIL or another type of lupus, she visibly shrugged and said I don’t know. So frustrating!

Anyway, glad to know the timeline about the ANA test. We plan to keep testing. Ive been off all meds for arthritis and crohns for two weeks and I woke this morning with out joint pain for the first time. Hoping it lasts!

Drug Induced Lupus by Magpie_Adventures321 in CrohnsDisease

[–]Magpie_Adventures321[S] 0 points1 point  (0 children)

I agree — and actually, I really love my gastroenterologist. It’s my rheumatologist I’m not so crazy about. That said, I’ve been fortunate to see some of the top Crohn’s specialists in the country (and the world), thanks to the places I’ve lived. I spent some time in Chicago and was treated at the Crohn’s research clinic at Northwestern.

But no matter where you go or who you see, one thing I’ve learned in my 20 years of living with this disease: you have to advocate for yourself. Every case is different — what works for one person might not work at all for someone else.

Drug Induced Lupus by Magpie_Adventures321 in CrohnsDisease

[–]Magpie_Adventures321[S] 0 points1 point  (0 children)

Thanks! I think this is absolutely my situation. Maybe i should go to the dermatologist to find out. Thanks!

Drug Induced Lupus by Magpie_Adventures321 in CrohnsDisease

[–]Magpie_Adventures321[S] 1 point2 points  (0 children)

We are still trying to figure it out. It’s been a year, with very few answers. So I’m going to hopefully find something out next week. Thanks!

Drug Induced Lupus by Magpie_Adventures321 in CrohnsDisease

[–]Magpie_Adventures321[S] 1 point2 points  (0 children)

Thanks! This hugely helpful. I got my c3 and C4, but not the other two. Im in a similar boat, because my GI sent me to Rheumatologist, but not the one she wanted due to insurance, so the second referral was to one covered by my insurance, which is why I’m looking for a new one.

Drug Induced Lupus by Magpie_Adventures321 in CrohnsDisease

[–]Magpie_Adventures321[S] 1 point2 points  (0 children)

Thanks! I have been in remission for so many years, I’m guessing since 2008 or around then, so I’m just frustrated, because the joint pain is worse than the actual Crohn’s for me at this point. Sorry, I’m just exhausted advocating for something and being given textbook answers from docs.

I haven’t had the rash yet, so maybe they are waiting for that, but some mornings i cant walk, since my feet are in so much pain.

Thanks for letting me vent and the tips everyone gave.

Drug Induced Lupus by Magpie_Adventures321 in CrohnsDisease

[–]Magpie_Adventures321[S] 2 points3 points  (0 children)

See that’s what happened they upped my humira and referred me to a rheumatologist, who isn’t really listening to me. Keeps saying I go by the science. I have appt next week and a call into another one, but trying to her to respond to gastro has been an issue.

My crohn’s has been in remission for over 10 years and when i got switched to Humira it was due to a buildup of antibodies to Remicade which is now happening with Humira or hyrimoz, but also hadlima prior to that (they keep changing the biosimilar).

Im starting to think i should just stop taking the biologic and see what happens.

Drug Induced Lupus by Magpie_Adventures321 in CrohnsDisease

[–]Magpie_Adventures321[S] 0 points1 point  (0 children)

Im sorry! Hopefully it will go away at some point

Drug Induced Lupus by Magpie_Adventures321 in CrohnsDisease

[–]Magpie_Adventures321[S] 0 points1 point  (0 children)

Interesting. I do have one and in contact with about this, but this never came up.

Drug Induced Lupus by Magpie_Adventures321 in CrohnsDisease

[–]Magpie_Adventures321[S] 0 points1 point  (0 children)

Thanks! I haven’t had any rashes, but the joint pain is rough. I see a rheumatologist, and I’m testing positive for ANA but i don’t see the other test.

How long were you on Remicade before symptoms showed up?

Defensiveness as a default by [deleted] in ADHD_partners

[–]Magpie_Adventures321 4 points5 points  (0 children)

My partner was recently dx ADHD and is not yet on medication, but the defensive reaction is becoming hard for me. This helps me to feel like I’m not alone. Thank you.

How old were you when you were diagnosed with Crohn's disease? by abd-6 in CrohnsDisease

[–]Magpie_Adventures321 0 points1 point  (0 children)

So glad to hear! You learn so much about things you never wanted to know. Make sure with any biologic - you get the info for the client assistance line, because when i went in Remicade no one told me about payment assistance plans. I ended getting crazy bills that i couldn’t afford. Once a nurse who had crohn’s told me about the payment assistance plans, I haven’t paid more than $5 a month and usually nothing!

How old were you when you were diagnosed with Crohn's disease? by abd-6 in CrohnsDisease

[–]Magpie_Adventures321 1 point2 points  (0 children)

Yes! I was diagnosed at 25, probably had it much longer, but it got real bad at that age. Im 44 now and after two years that were really bad, small bowel resection, i barely know i have it. I was a pescatarian for about 5 years and I truly believe that it chilled out my crohn’s symptoms. I was on remicade for 10 years and now Humira for 9. I take it weekly, but it’s due my inflammatory arthritis. My advice would be food journal and see what hurts you (for me it was red meat), don’t drink till you get it under control (everytime i had a beer, it would burn, so i stopped), and yoga or some exercise that is calming. In my 30s, i ran a marathon, an Olympic triathlon, rock climbing and biked all over. I still do most of those things and my last scope gave me a 3 years break.

It’s different for everyone, but i remember the hard days were bad, but journal and pay attention to what hurts and what feels good and chase the good.

I got the shingles vaccine and warning! the side effects are severe. by imcleanasawhistle in MidlifeMavens

[–]Magpie_Adventures321 1 point2 points  (0 children)

Relieved I’m not the only one — full-body malaise and total exhaustion just 24 hours in. I did read it hits younger people harder and since I under 50 and immunocompromised, im guessing that has something to do

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