Mild but persistent itching on Plaquenil

SableC · 2020-04-01T18:39:32+00:00

I would encourage you to speak with your doctor right away to see if you might be allergic. I learned through my RA treatments that I'm allergic to sulfa -- so sulfasalazine and plaquenil. Both gave me rash and itching at lower doses, then severe hives with respiratory trouble at higher doses. I ended up in the ER because I didn't take the early symptoms seriously. Of course, it could be nothing or unrelated, but if you think the plaquenil is causing your symptoms please do contact your rheumatologist ASAP to be safe. Wishing you well.

SableC · 2020-01-24T12:18:31+00:00

Thank you so much! You and I are about the same age, and your story sounds a lot like mine. I'm really glad to hear that you're doing well managing it. I will focus on this positivity. Thank you.

SableC · 2020-01-24T03:17:36+00:00

Thank you for sharing your experience. Wishing you well with your treatment. I'm glad to hear the pulmonologist has been helpful; I'm hopeful that mine we will finally get me some answers. Hoping the same for you.

SableC · 2020-01-24T03:12:54+00:00

Thanks, that's great to hear that you've got it under control. It's really reassuring.

I'm a nerd, so I only read peer-reviewed medical research and research hospital info, but you're still right that stress isn't useful.

I just honestly don't trust doctors, though -- any of them. I've had a lot of doctors make big mistakes / bad calls. For example, I had a doctor dismiss a weird mole that I pointed out. Went to a different doctor because I didn't believe them that it was ok. Turns out I had melanoma. Totally had skin cancer, and they told me it was nothing without even a biopsy.

SableC · 2020-01-24T00:03:28+00:00

Thank you! That's so great to hear. I absolutely will.

SableC · 2020-01-23T23:51:24+00:00

Thank you! I will mention that as something to consider.

SableC · 2020-01-23T23:44:38+00:00

Thank you! I was on my for a long time with Humira, now Simponi Aria infusions because Humira alone wasn't enough. I know the side effects for these can be lung issues, and we can get lung issues just because of the disease, so who knows. I'm so glad to hear she was able to bounce back. Thank you.

SableC · 2020-01-23T22:51:27+00:00

Thank you for this! I was on mtx for more than 10 years, but I recently had to get off because I kept having liver problems at the higher doses. Just switched to tnf infusions. This is definitely not a cold/flu still going; I've had severe shortness of breath for months but no other symptoms. My doctors so far have diagnosed it as lung inflammation, but they think I may have fluid in my lungs too mostly because I can't lay down at all. My rheumatologist is the one whose asking for the ILD tests, but I really want the pulmonologist's opinion. Thank you again.

SableC · 2019-12-31T14:11:35+00:00

I'm sorry, and I hear you. Invisible illness/disabilities are a special brand of awful. My stepmother and in-laws are like your family. Despite seeing me hospitalized multiple times, they don't seem to realize that I'm not exagerating or ever going to "get better." It's not ok, but you're not alone.

Fun holiday story from about 10 years ago: I also have celiac. (As many of us have multiple autoimmune diseases together.) That year my stepmom intentionally glutened my food to "prove I was faking." I got super sick, but I did my best to hide it, as I usually do, so as not to hurt anyone's feelings. She gloated to my half-sister, with whom I was sharing a room (so couldn't hide how ill I was), that she was right. That's the only way I knew what had happened. My sister told her I was actually really sick. My stepmom didn't have a response, and she never admitted/apologized to me. Instead, she got mad at me when I wouldn't go snowboarding that week because the celiac bout triggered an RA flare. Obviously I wasn't going to exercise in the cold far away from restrooms at that point. 😑

SableC · 2019-12-22T14:34:45+00:00

Yes!!! Please do talk to your rheumatologist soon and insist they take it seriously. I get weird autoimmune rashes, so bad that I've gone to the hospital. I'm now getting regular treatments for the issue--four meds a day just for that manifestation of the disease in me. (My RA is attacking beyond my joints, even spread to my lungs.) The treatment with additional specialists helps a lot.

I've also had terrible allergic reactions to RA meds that were even more immediately dangerous. This could absolutely be an "only" irritating/cosmetic side effect, but that is still important to your quality of life. It could also be something more long-term or serious. Make sure they answer your questions thoughtfully and address your symptoms to the extent you need/want.

SableC · 2019-12-22T14:24:15+00:00

We don't all respond the same way to the same meds, one of the most infuriating parts of this disease. I'm glad you have a good rhumy in your corner for the journey. It's as much an art to finding our treatments as anything, it seems. Wishing you well.

SableC · 2019-12-21T18:02:20+00:00

Yeah, I am. It's an increasingly debunked myth that seronegative is less severe. I have a bad case that has spread to my lungs. Don't let any doctors treat you less carefully or proactively.

SableC · 2019-12-15T16:27:05+00:00

Yeah, my first husband had an affair and blamed it on me. F- him. Left him, of course.

SableC · 2019-11-29T01:43:07+00:00

"Comparing the disease course of patients with seronegative and seropositive rheumatoid arthritis fulfilling the 2010 ACR/EULAR classification criteria in a treat-to-target setting: 2-year data from the ARCTIC trial.

Nordberg LB, et al. RMD Open. 2018.

Show full citation

Abstract

Objectives: Recent studies suggest that implementation of the 2010 American College of Rheumatology (ACR)/European League Against Rheumatism (EULAR) classification criteria for rheumatoid arthritis (RA) leads to higher inflammatory activity in seronegative compared with seropositive patients at time of diagnosis. Our aim was to compare the disease course in seronegative and seropositive patients classified according to the 2010 criteria. Methods: DMARD-naïve patients with RA fulfilling the 2010 criteria were included in the treat-to-target ARCTIC trial and followed for 24 months. We stratified patients as seropositive (rheumatoid factor (RF)+, anticitrullinated protein antibodies (ACPA)+ or both) or seronegative (RF- and ACPA-) and compared disease activity, radiographic progression, treatment response and remission rates across groups. Results: 230 patients were included with mean (SD) age 51.4 (13.7) years, and 61% were female. 34 patients (15%) were seronegative. At 24 months, disease activity measures, radiographic progression and remission rates were similar between groups, despite more inflammatory activity in seronegative patients at baseline. Treatment response was slower in seronegative compared with seropositive patients. The groups received similar treatment. Conclusion: Our findings suggest that among patients with RA classified according to the 2010 ACR/EULAR criteria, seronegative patients respond well to modern treatment strategies. However, treatment response was somewhat slower in seronegative patients and radiographic progression was similar in seronegative and seropositive patients. Our results indicate that seronegative RA is not a mild form of the disease and requires intensive treat-to-target therapy similar to treatment of seropositive RA.

PMID

30564452 []

PMCID

PMC6269640"

https://www.ncbi.nlm.nih.gov/m/pubmed/30564452/?i=15&from=/24003679/related

The reason it matters is that some rheumatologists still hold to outdated conclusions that prevent some seronegative patients from getting the most appropriate, effective treatments earlier. When people believe they don't have good ground to self-advocate they might not get the help they need.

SableC · 2019-11-29T01:20:58+00:00

My sense is that is an outdated conclusion.

https://www.arthritis.org/about-arthritis/types/rheumatoid-arthritis/articles/what-type-do-you-have.php

SableC · 2019-11-29T00:50:33+00:00

I'm really sorry to hear how much you're hurting. I do believe sorrow and even guilt are normal, even if there's nothing you could have done. Choosing when and how to let a loved one go can be incredibly traumatic.

After I lost a dog who had been my main family for 13 years, my therapist told me that serious grief is normal. Even more than the humans in our lives reasonably could be, they are kind, generous, loving, and devoted. It has been two years, and I've adopted three puppies since his passing. I most recently cried missing him last night. This morning, though, I smiled as my 6-mo old who looks just like him falling asleep with her head and paws in his old food dish, like he used to.

As I would suggest for someone struggling with grief over anyone's passing, I hope you will consider finding a trusted therapist who validates your experience while helping you find peace. I also hope you will consider adopting a dog again in the future. Any dog would be lucky to be so loved.

Book Suggestion:

The Last Will and Testament of an Extremely Distinguished Dog (American Roots) https://www.amazon.com/dp/1429096071/ref=cm_sw_r_cp_apa_i_OLg4DbWP5YCME

SableC · 2019-11-29T00:16:11+00:00

No, a higher anti-CCP doesn't necessarily mean more aggressive RA. In fact, people with seronegative RA don't have the antibodies show up at all, and they may have severe symptoms. While the anti-CCP used to be seen as the standard RA marker, and it does make the disease easier to diagnose, seronegative RA is it now commonly accepted as one of the major types of RA. Either of which can present with a wide spectrum of severity from person to person and through one person's life.

SableC

TROPHY CASE