Plaquenil experiences—Not Covid-related

[HSmomof2]

Please don’t quote, as I plan to delete details.
 

I’ve had Hashimotos and fibromyalgia for many years. Thyroid is well-controlled with medication. However, I’ve still had unexplained joint pain and stiffness, rib pain, fatigue, and elevated inflammation markers in my blood tests and very positive ANA. Finally was able to see a rheumatologist who did a ton of labs and X-rays. Long story short, I don’t have lupus, RA, etc. but says I definitely have autoimmune issues going on and diagnosed inflammatory arthritis and possibly ankylosing spondylitis. Dr would like me to start on a low dose of Plaquenil to see if it improves how I feel and my inflammatory markers. I haven’t started it yet because the dr wants me to have a baseline eye exam first. I’m always nervous to start any new medication. Does anyone have experience taking this? Also, I’m planning to get my Covid booster at the end of the month and wonder if it would be better to wait until after that to start the med. From what I’ve read, it doesn’t appear to be considered an immunosuppressant. 

[Serenade]

I've been on hydroxy for RA for over a year and a half.  I've tolerated it well, and it has helped me.  I started out with one 200 mg tab a day, but after 6 months or so I increased to  2 tablets five days a week and 1 the other two days. It takes a while for hydroxy to build up in your system, so you might not feel any results for several months.  My rheumatologist told me that hydroxy wasn't strong enough to affect the vaccine, but I wonder about it; I had very little reaction to the vaccine.   It is good to get an eye exam first, but my eye doctor said it is very rare to have any eye problems from the hydroxy.  

[Ditto]

I have been on it for many years.   My immunologist said it was completely fine with the Covid vaccine and not to worry at all.   She insists upon an eye exam before starting it and the protocol is an eye exam every 6 months while on it.  My ophthalmologist  sends her a report every 6 months when I am seen.  My eye dr says that it is unusual to have problems with it these days due to more conservative dosing, but it is always better to be safe than sorry.  I have had zero problems with this med and it has been a life saver with my auto-immune issue.   I take a steady dose every day.    I probably won't ever be able to come off of it, but that is due to my auto-immune issues and has nothing to do with the med. 

[Junie]

I took it a long time ago to treat my RA.  I tolerated it well -- no noticeable side effects, but it didn't help me.

[Megbo]

I've been taking plaquenil for over 20 years, since I was diagnosed with Sjögren's syndrome when I was 15. It's been extremely helpful for me and I've had no side effects. The joint pain/stiffness, fatigue, and inflammation I used to deal with are completely gone, and the core symptoms of Sjögren's (dry eyes and mouth) have not gotten any worse. I only see my rheumatologist yearly now because my symptoms are well-controlled. I also see an ophthalmologist and have a series of tests (visual field, etc.) done every year and have had no issues.

I started out at 300mg/day, increased to 400mg in university when I was having some breakthrough symptoms (caused by stress), then went back down to 300mg when new dosing guidelines came out in 2016. The tablets are 200mg, so I take 1.5 every day - I just crack them in half, but you can ask the pharmacist to cut them. 

I've had two doses of the Moderna vaccine and have had very normal side effects (sore arm, slight headache the next day). According to my rheumatologist, plaquenil does not increase my risk of severe illness from Covid or reduce the effectiveness of the vaccine, so based on my age and health I don't require an early vaccine booster. 

[HSmomof2]

Thank you for the responses. It’s encouraging to hear it’s helped and no major side effects. I will probably wait to start until after my booster, since it’s so close now anyway…..I’m getting the booster for other non-autoimmune issues. My primary care doctor suspects taking the Plaquenil very well may resolve some other health issues too because he thinks they’re being influenced by my chronic inflammation. 

[Spryte]

I took it for several years while treating tick borne illnesses and dealing the pain and inflammation. Fairly sure - though it’s foggy now - that it was part of the cocktail to treat babesiosis (a cousin of malaria, took me years to get that miserable bug into remission).

No bad experiences to report here, no side effects.

Edited October 9, 2021 by Spryte
Autocorrect fail

[Ditto]

1 hour ago, HSmomof2 said:

Thank you for the responses. It’s encouraging to hear it’s helped and no major side effects. I will probably wait to start until after my booster, since it’s so close now anyway…..I’m getting the booster for other non-autoimmune issues. My primary care doctor suspects taking the Plaquenil very well may resolve some other health issues too because he thinks they’re being influenced by my chronic inflammation. 

 Your dr may have told you this but one thing about it is that it can take quite a long time to really kick in and work well.  Upwards of 6 weeks if I am remembering correctly.  So you probably won't see any improvement immediately, but stick with it.  It really is a fantastic drug and has improved my quality of life quite a bit.   

[Halftime Hope]

I have a family member that tolerates it very well, no side effects.  

@HSmomof2  I tagged you because I really want you to see this.  I work with a number of people who are now getting booster shots. (It's a frequent source of happy conversation in my office.)  Within the last month, three have gotten COVID within a week or two after getting their boosters, after months and months of living fairly normally as vaccinated people: masking in stores, going to church weekly, but masked, masked at work, and so on.) Another came down with COVID, but it was from exposure due to a sick family member, so that "doesn't count." (We know it was an high-dose exposure.) 

Of the three, one was hospitalized for 4 days; the others (and their in-home family members) had varying degrees of "nothing-burger" to real misery. 

It seems to me, although I don't know exactly how it's happening, that post-booster, their immune systems are not quite up to the task of fighting off germs for a period of time.  Were I getting a booster, I think I'd stay home for a few days to limit exposure pre-booster, then plan to lay low for as long afterward as I could, maybe two weeks if I could? 

I know this is observational only, but I had heard similar observational anecdotes from Israeli clinicians, and now I'm seeing the pattern, at least with some people, close to me. 

One of my co-workers observed this independently of my connecting the dots, and he will wait to get his booster til after upcoming travel.  

Hoping to be helpful. 

[prairiewindmomma]

FWIW, on the booster & DMARDS, from the observational studies I have read (which are almost all small, and obviously all recent to this year):

1. Plaquenil seems to have no depression on the immune system; it does have some long documented antiviral and anti-inflammatory  properties, but I haven't seen a plaquenil + covid study. Though, goodness, after all the kerfuffle last year, maybe there will be one.

2. Those on biologics seem to have a pretty decent immunoresponse to the vaccine. Biologics in and of themselves, however, make you more susceptible to infection. https://www.bmj.com/company/newsroom/methotrexate-users-have-a-reduced-immune-response-to-mrna-covid-19-vaccine/

3. Those on methotrexate have a pretty dang sad response to the vaccine. I haven't seen any studies on people who took a two week break before and after the vaccine, but if anyone sees that, I would LOVE to read the study.  Likewise, I haven't seen studies on third dosing response to methotrexate. 

https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(21)00212-5/fulltext

medicine by medicine guidelines: https://creakyjoints.org/living-with-arthritis/coronavirus/covid-19-vaccines/american-college-rheumatology-clinical-guidance-covid-19-vaccine/

 

 

[HSmomof2]

2 hours ago, Halftime Hope said:

I have a family member that tolerates it very well, no side effects.  

@HSmomof2  I tagged you because I really want you to see this.  I work with a number of people who are now getting booster shots. (It's a frequent source of happy conversation in my office.)  Within the last month, three have gotten COVID within a week or two after getting their boosters, after months and months of living fairly normally as vaccinated people: masking in stores, going to church weekly, but masked, masked at work, and so on.) Another came down with COVID, but it was from exposure due to a sick family member, so that "doesn't count." (We know it was an high-dose exposure.) 

Of the three, one was hospitalized for 4 days; the others (and their in-home family members) had varying degrees of "nothing-burger" to real misery. 

It seems to me, although I don't know exactly how it's happening, that post-booster, their immune systems are not quite up to the task of fighting off germs for a period of time.  Were I getting a booster, I think I'd stay home for a few days to limit exposure pre-booster, then plan to lay low for as long afterward as I could, maybe two weeks if I could? 

I know this is observational only, but I had heard similar observational anecdotes from Israeli clinicians, and now I'm seeing the pattern, at least with some people, close to me. 

One of my co-workers observed this independently of my connecting the dots, and he will wait to get his booster til after upcoming travel.  

Hoping to be helpful. 

Yikes, that is disturbing, but thank you for the info. I can lay low a little more before and after….I work from home, can order groceries,   etc, and everyone in our household is fully vaccinated. Our area had a big Delta surge but numbers are steadily decreasing over the last few weeks. 

[HSmomof2]

48 minutes ago, prairiewindmomma said:

FWIW, on the booster & DMARDS, from the observational studies I have read (which are almost all small, and obviously all recent to this year):

1. Plaquenil seems to have no depression on the immune system; it does have some long documented antiviral and anti-inflammatory  properties, but I haven't seen a plaquenil + covid study. Though, goodness, after all the kerfuffle last year, maybe there will be one.

2. Those on biologics seem to have a pretty decent immunoresponse to the vaccine. Biologics in and of themselves, however, make you more susceptible to infection. https://www.bmj.com/company/newsroom/methotrexate-users-have-a-reduced-immune-response-to-mrna-covid-19-vaccine/

3. Those on methotrexate have a pretty dang sad response to the vaccine. I haven't seen any studies on people who took a two week break before and after the vaccine, but if anyone sees that, I would LOVE to read the study.  Likewise, I haven't seen studies on third dosing response to methotrexate. 

https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(21)00212-5/fulltext

medicine by medicine guidelines: https://creakyjoints.org/living-with-arthritis/coronavirus/covid-19-vaccines/american-college-rheumatology-clinical-guidance-covid-19-vaccine/

 

 

Thank you so much for those links…..the creakyjoints article was the best breakdown I’ve seen on the vaccine and meds.