Have you ever thought your meds increased your RA symptoms?

I'm new to this group. I have a anti-ccp of 144 and x-ray shows erosion which is what put my rheumy over the top despite zero inflammatory markers ... although I did have high platelets. She put me on Plaquenil which I've been on for almost three months. I hate to say it, but I feel like I'm getting worse. It scares me because it seems to be happening so fast. I'm still able to be pretty active (work in my garden, walk, etc.) but the pain I deal with in the evening, morning is daily and most especially when the weather changes. I now have to sleep on my back at all times. If I lay on my side, even with a pillow in between my knees, I get terrible knee and hip pain. It's all very scary. I'm fortunate that she gave me hydrocodone which helps me through the bad days, but I'm terrified she's not going to renew my prescription. I get scared that maybe it's the Plaquenil because it only really started getting worse once I was diagnosed. So torn over what to do.

22 Replies

  • You may need another med such as methotrexate (i was given that after 1 month on Plaquenil w no improvement) then I was statted on Biologic shots. Talk to your doctor right away about your concerns. Don't wait. There are so many different meds to try. Good luck!

  • I started on plaquenil which did not improve my RA systems then had to go on humira and methotrexate while has helped significantly. Lots of side effects but overall I am much better.

  • I am also new to the group. I was diagnosed with RD by family doctor as my ACCP was greater than 1000. He also put me on plaquenil a month ago and I feel worse than ever. I have my first appt. on the 13th of July with my Rheumy. I am scared as I just don't know what to expect. I am in pain all over all of the time. I hope we can both find relief very soon.

  • The plaquenil does take a while to get into your system. I hope your appointment goes well. Don't hold anything back and start keeping a journal. Find the best Doctor you can, a teaching hospital is a great place to start.

  • Yes, I have started keeping a journal. It's a great reference as I get "brain fog" consistently now. 😳

  • Call the rheumatologist you are supposed to see and ask if you need to bring any new blood work with you! I did not know to do that and had to wait two more months to start treatment. It has been a LONG year.

  • Good advice I will call the Dr office and obtain my results before my appointment. Thanks!!

  • I also go and get a copy of my blood work and keep it in my car, in the glove compartment, where I know I wont lose it lol. I take it with me to every single appointment now just in case things don't get faxed correctly again. We live in Kansas and the closest rheumatologist is 2 hours away, the rest are 5-6 hours away. 2 hours doesn't sound like that big of a deal but car rides are pretty rough when you can't move around a lot. Good luck! Thankfully the reality of the meds hasn't been as bad as what was going through my head while waiting to get started on them.

  • Prayers for a good experience today! 🙏

    T. Rogers

  • Yea it's crazy to me that my pain is worst than when I started the drugs. Only thing that has changed is starting the meds. Baffles and concerns me so much.

  • i can completely relate i was diagnosed in March with RA by family doctor cant get into rhumy until august 2nd and im scared as don't know what to expect either i feel like every joint imaginable in affected right now im in so much pain its so crazy how one minute i was a very active mother and wife to barley being able to get off the couch to clean my house. We just need yo hang in there.

  • It sounds like you are newly diagnosed - under a year? As hard as it is, don't lose hope. The Plaquenil does take a while to get into your system, but I agree with MeTass, it sounds like you need to add the Methotrexate. I have been on it for over 20 years. I found if I take it at night, I have no problems with dosing. I have been on pretty much all of the injectables, Remicade, Actemra and now on Rituxant (Hateful drug.) Like you I have always had a high platelet count. Many times my inflammation markers are masked even though I have swelling and visible inflammation. Ask your doctor to perform a Vector C test. It is truly the best judge out there of your disease besides keeping track of your daily symptoms in a journal or on the computer. There is also a analgesic topical I use for my hips and knees after a hot bath at night called Volteran. Hang in there, and make sure you keep up with your blood work.

  • Thank you so much for all the advice. I accidentally used too much Voltaren over a two week period. I was taking it in pill form under a generic name and didn't know it was Voltaren. So while taking the pills I was also using a Volaten patch on my back and Voltaren cream on my knees. So I was essentially overdosing on it and didn't know until I broke out in what looked like a rash under my skin. It turned out that tiny vessels were bursting because my blood was thinning from all the Voltaren I was ingesting and applying to my skin. So now I cannot take it without having a similar reaction so I'm essentially allergic to it now!!! Makes me so mad because it's so effective ... I loved the cream.

  • Hi, change medication , all of them have side efect, and for pain tramadol is pretty

    Good and not addicting like hydrocodone

    Drink a lot of green tea whit ginger is a good natural antinflammatory remedy

    use turmeric in your food

    Good luck

  • Hello Michelle63,

    It does take time for the meds to work however you need to tell the Dr. how you are feeling.You know your body better than him. Keep a journal , tell him or her that this isn't working. Be very straight forward with the Dr.that the meds aren't working. 3 months is a good trial so maybe it's time to move on. Also maybe ask to see a pain management Dr. If your Dr. doesn't listen to you find a new one. I had to change Dr.'s as mine wasn't listening to me. You need to be able to "connect" with your Dr.It takes team work with you both to manage this disease. I have had RA , Fibro and osteoarthritis over 4 years now and have been on many of the drugs to find the right regimen to help me. I am now on Areva and Actemra infusions , Tramadol,also 2 meds for my fibro and I think this is finally working for now. :-) However your body seems to find a way around the drugs eventually and then something new has to be used! These diseases are always a challenge to deal with! Yes as you say weather changes are really bad for us! I was having a flare last week which i think the weather was part of the cause. I wish you well and hope that you and your Dr. will get things under control soon!! I

    I also take some extra vitamin supplements to help with joints . You can do some research on these with google. I hate taking all these pills in the morning but they help me so i keep on doing it! :-) I hope you have a pain free day! ((Hugs))

  • Thank you very much. I see her on August 4th. I finally have decided to drastically change my diet in hopes that helps in someway. I fear that I am going through the motions for purposes of insurance. If she puts me on a biological too soon then insurance won't cover, so I have to go thur this process of Plaquenil, then Mextrodate then finally the biologic. I am just guessing... I hope to God I can stop at Plaqunil, but based on what I am going through now, I just don't think it's working. I am hoping to give it a year.

  • Yes I have had to jump thru all the hoops too! I have been thru ALOT of different meds till I have finally sort of found a good cocktail for now. It's taken me 4 years of trial and error! Unfortunately my body likes to respond well at first and then work its way around the meds so I have to try new ones.

  • I also have high CCP with low crp and sed rate. I have erosion on x-rays and the doctor can feel the fluid in some joints. I also have nodular scleritis which my eye doctor wanted to treat with plaquenil, but my rheumatologist said that wasn't strong enough. So maybe, as others here have said, you need a stronger med.

  • Plaquenel did the same to me. Then I tried Arava and broke out in a horrible rash. That's when I decided I was done with RA Pharm meds. I take ginger and Tumeric daily. When my pain level is high, my hips are the worst, I take a cocktail of ibuprofen and acetaminophen, and sometimes I'll throw an aspirin in there. Ice packs for 20-30 mins help tremendously! I save the Norco for days when I just can't function unless I have one. Some people do well on RA meds. I didn't and I refused to keep trying. I also have gloves that help. I wear them when I sleep. You can find those on Amazon.com. I hope you can find what works for you! Keep fighting!!

  • I am going to give vegan and juicing a try. I just bought Kris Carr's book and a whole lot of veggies. I don't want to be on these meds either. My sister has a similar condition but much worse and she's been on a roller coaster of drugs for the last five years. I certainly appreciate this site very much. It provides so much insight into everything that all of you and I am going through. It just seems to me that drugs don't seem to be working for so many of you. So I'm hoping that maybe changing my diet drastically will help. I will continue on the drugs and continue to see my rheumatologist. I just have to know that the drugs are the only way for sure. So I'm going to give diet a try. Thanks for all your support!

  • Be sure to talk with your RA doc and let your concerns and symptoms be known. Finding the right medication can be trial and error. Good luck!

  • I'm new to this group as well :) In response to the plaquenil possibly making your pain worse...my answer is YES it can! I was diagnosed with RA 10 years ago and have been on every DMARD possible and they all made my pain extremely worse, especially the plaquenil. My rheumatiologist is one of the best in the country and he has been the only one to admit that the DMARD's can make pain worse in some people. My anti-ccp has always been extremely high from the start (greater that 250). I have tried every DMARD and every biologic out there and the only one that helped was Xeljanz, but it still only helped 50%. I recently got very very bad after just having a baby and I stayed on Xeljanz throughout the pregnancy. It finally stopped working completely and I was put on Rituxan. Has been about 3 weeks and I see absolutely no improvement, if anything I'm getting worse. It would be nice to be able to add a DMARD to help get me through until I can switch to another biologic because the Rituxan stays in your system for 6 months. But I can't!!! I feel like I just can't win. My advice is to talk to your doctor asap about the plaquenil.

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