What I guess I trying to understand is what all is this med suppose to help with? Like the main thing Im wondering is I like to go outside in my yard a lot to cut grass, weed eat, wash my truck, just anything outside? But with the Lupus if I try to go outside an cut the grass on a good day then it will make me go into a flare for days or weeks at a time. And I cant help but to try an go outside on a good day cause I get too tired of being cooped up in the house feeling useless and board, lol!!! So im curious will I finally be able to go outside and do projects and work or just even to relax without having to pay for it by going into flares for weeks at a time?
That's a good question Monique! I've been on it for 1-1/2 months so I will be interested in seeing the responses you get. Have a good day. :)
Sonja
I don't know I have been taking it for less than a week!
I’ve been taking this medicine since 1996 and it does help, but does not completely take all aches and pains away. It takes a while for the medicine to build up in your system. Hope this helps.
I have been on it since my diagnosis in December. I was told it can take between 4-6 months to notice a change. For me it was closer to 6 months. I think it has helped a lot. I could barely get out of bed before starting it and the prednisone. I am now down to 2 mg of prednisone each day and my drop down has gone much more smoothly than before. Every time I would drop down a mg of the prednisone I had to brace myself for agony for about 3 weeks. I have been weaning myself very slowly. Now when I drop down there are still added aches an pains, but nothing compared to before.
I have been on it for over 2 years. It took a good 6 months to take effect. It helps a lot with joint pain and also if you are losing hair. It has helped my hair grow back significantly. Although I still get periodic flare ups, then tend to be less severe and shorter periods of time (especially if you are able to exercise regularly in addition). It has only helped me minimally as far as getting a skin rash from the sun. Overall, I would say it is a big help. Hope you start feeling better soon!
Ive been on it for amlost two years and a couple of times i stopped taking it…then I realized how much it really does help! I dont mess around with it anymore.
Oh-----------I know it is so very hard. I use to be a Pilot, rode my motorcycles, sit by the beach, for I love the sun, but all this changed........
I can tell u that I am feeling better.........
No more seizures & the list goes on. I know this will sound crazy, but I slowly stopped all my meds...........
I pray all the time......
I really believe I will be healed & I think u will be as well. Just try to change the tapes in your head-------the ill ones.......It is hard in the beginning, but it gets much easier........
Peg :)
I've been taking it for almost 2 years now and I think it helps a lot. Fortunately, I've not had any sensitivity to sunlight, so I don't know if it helps you be able to get back out in the sun or not. It does really help with the joint aches and my rheumy says that it helps protect your organs. Since I've not experienced any side effects, I'll keep taking until something better comes along (hopefully).
Exactly what the others have said... it helps prevent flare ups and if you do get a flare up, they're less severe and a lot shorter. It's also supposed to help with joint pain/inflammation as it has some anti-inflammatory properties. I still need the occasional motrin, but my joint pain hasn't put me in tears like it used to before I started taking the meds. It can also help reduce the fatigue.
Here is a bit of information from the Lupus Foundation: http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutdiagnosis.aspx?articleid=87&zoneid=15
Agree with all of the above. I've been on it for 2 1/2 years. It has helped a lot but takes quite a while to kick in (6 months for me). Don't have near the joint swelling, but still have significant fatigue, seem to have fewer flares and less reaction to the sun, but I still will flare if I get out in the sun or heat for too long. It helps but it's definitely still there. Good luck to you. Hang in there.
I've been on it this time for over two years. I am very fair so I am not able to be in the sun for very long at all. Even with long sleeves, hat, sunscreen, etc, the sun still affects me a great deal. I don't have organ involvement though so I count myself lucky.
Monique,
It really does help. I have been taking it for many years now. I tried to go off of it because I didn't have insurance for awhile but that was a mistake. I really noticed a big difference in the aches and inflammation. The antimalarial is wonderful as far as I am concerned. On good days, I still go out and do some gardening. You may have to make sure you wear sunglasses and a sunscreen with a high SPF. Also, a hat will also help to protect you as the UV rays will set you into a flare. I wear my straw cowboy hat. I live in Tennessee. Then, make sure you stay hydrated and take breaks as often as you can. I enjoy being outside, gardening, washing my truck and photography outside all I can. I am 57 and I am not ready to give up what I enjoy. I have stage 3 kidney disease from take NSAIDs so all I can take is Tylenol for my pain. It doesn't help for the inflammation, so Plaquenil is all I have for that. Good luck, and just give it some time. Hang in there and be thankful for what you are still able to do. Just know your limits and take your precautions. Mary
It’s main purpose is to help keep the disease from progressing by helping with joints and fatigue. It does not help with the sun. Stay out of the sun as much as possible. Also don’t try to do all of your activities outside in one day. Space all chores etc out as overdoing will make you flare. I’ve been on Plaquenil for 20+years and it has kept lupus out of my organs till just recently. My last 2 labs are showing some possible kidney and liver involvement now. The Plaquenil and prednisone helped me be around to raise my daughter. I am thankful for that. The next step for me is trying to get approved to go on Benlysta. Good luck and never just stop taking your medications without speaking with your doctor. Going off pred cold turkey can kill you as it has taken over the functioning of your adrenal glands. Always consult your doctor! lots of love, Sheri
Hello Monique,
"Jillzee" made the best comment about plaquenil it does help but does'nt take everything away 100% so don't get expecting that but it does ease issues a fare bit but although you love outside there's still precautions we have to take where the heats concerned.
Monique the link below explains in full to how plaquenil helps our bodies and to what percentage.
http://www.hopkinslupus.org/lupus-treatment/lupus-medications/antimalarial-drugs/
Terri :)
It Suppresses the immune system and helps with skin and joint pain. Its kind of the first defense medication you get. Maybe you are allergic to Grass in which case a antihistamine will help the non drowsy kind. hope that helps
I've been on it for about 1.5 yrs. I'm developing sun sensitivity now, so I don't think its helping with that. However, I too stopped taking the medicine 2 times before and I found out very quickly just how much I really did need it. It helps me with my morning stiffness a great deal.
My rheumy prescribed this for me and it has been on my bedside table for a month. I am currently taking 11 prescriptions and insulin and didn't want to put one more drug in my system cause right now I'm pretty balanced. But after reading these posts, I will try it.
Good Discussion. My left big toe hurt and swelled up. Had to have two operations because the first person (podiatrist) did it wrong. Now I have a metal plate with screws in my foot. My right toe has been hurting so that would be so great to avoid progression. Took me so many years to have mo pain in my left toe.
Monique,
Hydroqulorequine (Plaquenil) is an anti-malarial drug that's been used for many years, and for some people can help with lupus symptoms, but it's not a "cure-all" by any means. It's usually a first line of defense, along with possibly Prednisone, CellCept, or Benlysta. These have the fewest side effects initially, and aren't normally used to treat newly diagnosed patients.
I am on Plaquenil, Pred, and CellCept and am not a candidate for Benlysta because of ANA negative. However, since Jan I feel more like my "old self" than before my diagnosis.
I feel like I am more susceptible to sun and heat reactions and I wouldn't recommend trying to do a lot of yardwork until you get a good handle on your lupus, although it may not ever be enough for you to ever to this again. I am sorry to be blunt, but you will still need to be careful with your health.
Please take good care of yourself,
DeAnne