Hi all,
I was recently diagnosed with Lupus and have been taking Plaquenil for about a month. It's helped with joint pain, but now I'm starting to have new, strange symptoms. I feel flu-like and terribly run down and I'm tired no matter how much I sleep. I've also gotten mouth and nose ulcers. Are these symptoms Plaquenil will fix? How long does it take to kick in? I'm on 400 mg. which I think is the standard dosage.
Thanks.
Melissa
Dear Melissa - Hi,
You may be having an allergic reaction. I took Plaquenil for one month and I got terrible intense itching. I was always tired and felt run down also, the only positive was that the joints were feeling better too. I called my doctor and he said I was allergic to it and stop taking it. Now there is no medicine for them to give me. So I'm screwd!
He actually said there is nothing else I can give you. So I guess I'm doomed to be in pain. This Rhuematologist here in my city is so uncaring that I wish I could go elsewhere, but there is not another Rhuematologist in our city.
:(
Hi Danee, i was told the same thing by a doc who had tried plaquenil. They said, "There is nothing else I can do." But thank God I felt miserable enough that I looked for another doctor. I have found quite a bit of relief since then. No magic pills, but always more than one option to consider...don't give up. if you din't have another rheumy you might find an internist or other health care person to treat you.
Hi Melissa, I agree with Danee, I would let the doc know and see if it is an allergic reaction.
Hi Danee,
Thanks for your response. Sorry to hear you had such bad reactions to Plaquenil. I did tell my doctor all of my symptoms and he said they were Lupus related or that I caught the flu. I did a lot of research and found that most of my symptoms are common for Lupus. I'm also sorry to hear about your limited options for doctors. Where do you live? I may be able to help... I have found a lot of doctors here in NYC and can see about getting referrals for wherever you are. Mine told me about another drug option called Methotrexate. I considered taking it, but it's really strong with lots of possible side effects. I decided to give Plaquenil 4 months and see if it's kicked in then. If not, maybe I'll try it.
DaneeG said:
Dear Melissa - Hi,
You may be having an allergic reaction. I took Plaquenil for one month and I got terrible intense itching. I was always tired and felt run down also, the only positive was that the joints were feeling better too. I called my doctor and he said I was allergic to it and stop taking it. Now there is no medicine for them to give me. So I'm screwd!
He actually said there is nothing else I can give you. So I guess I'm doomed to be in pain. This Rhuematologist here in my city is so uncaring that I wish I could go elsewhere, but there is not another Rhuematologist in our city.
:(
Melissa, just saw this post since I've been off-line most of the week due to my puppy, Mooch's, occasionally hankering for power cords and internet lines, and couldn't replace them til yesterday.
As for your symptoms from the Plaquinil, every one you're experiencing are listed as possible side effects in the online PDR (Physician's Desk Reference for Rx drugs). I've included the copy below:
Side effects cannot be anticipated. If any develop or change in intensity, tell your doctor as soon as possible. Only your doctor can determine if it is safe for you to continue taking this drug.
Side effects of treatment for lupus or and rheumatoid arthritis may include: abdominal cramps, change in eye color, vision problems (e.g., light flashes or streaks), acne, anemia, lightening of hair, blisters in mouth and eyes, blood disorders, convulsions, diarrhea, nausea, vomiting, diminished reflexes or severe muscle problems including paralysis, dizziness, nausea, emotional changes, darkening of skin, lightenin of hair, skin rashes, headache, hearing loss or ringing in ears, breathing difficulties, heart problems, hives, itching, light intolerance, liver problems or failure, hair loss, loss or lack of appetite, nightmares, psoriasis, skin rash or inflammation , dizziness, extreme fatigue, weight loss.
It also mentions that one should avoid alcohol and any other medication that's processed through the liver; that it makes one more sensitive to light and sun; that it should be avoided in anyone with kidney or liver problems; and that it should be taken with a full glass of water or food.
I was also prescribed the initial standard SLE dose of 400 mg a day and had the same symptoms as you're having (and I'd never had mouth ulcers until taking it), plus terrible nausea and a lot of bloodwork problems they at first thought was leukemia. But it was the nausea that caused me to reduce my own dose by half and my muscle problems and fatigue have gotten much better, although it took a couple months to clear my system before I felt any improvement just recently.
I also take methotrexate, but it has many of the same side effects. I've included the pre-cautions and possible side-effects of it anyway below, since so many of us here take it and I've read posts about all of its side effects from our members one time or another:
You should avoid getting pregnant or trying to become pregnant, breastfeeding, drinking alcohol, or receiving certain live vaccines.
Side effects may include: cancer of the lymphatic system (lymphoma); kidney damage; lower white cells, red cells, and platelets in your blood; liver damage; lung disease; infections; severe anemia; severe skin reactions and rashes.
Unfortunately, many of the popular infusions used for SLE are methotrexate-based drugs, so they all have similar side effects. On the upside, most negative side-effect tend to lessen after one takes either Plaquinil or methotrexate for a couple of months. But some people's reactions to either drug are so severe that they're either considered allergic to one or the other and stop taking it on the advice of their doctor. Since I also have polymysistis, a muscle-weakening disease, and a spinal condition that also causes inflammation, as well as SLE, I had to cut back on the Plaquinil in order to continue taking it. Thought I'd have to give it entirely until just last week (about 6-8 weeks after I cut back) when I started noticing how much better my muscles felt and how I no longer needed naps several times a day. Then I remembered that my first rheumy told me that it takes a couple of month's for Plaquinil and methotrexate to work on inflammation (& no one's sure how either of them do this exactly in RA or SLE), but if I miss a dose it would be no big deal since it also takes a long time for these drugs to clear our bodies after we stop taking them. So then it made sense to me why it took so long to feel any better after cutting back on it.
Hope this helps some. pax, pj
Thanks, PJ.
The third doctor I saw prescribed Methotrexate, but I've been hesitant to take it. First, I'm going to India in April (assuming I feel well enough) and I can't have live vaccines while taking methotrexate, as it lowers the immune system. Truthfully, I am also nervous to take it as it seems to be a stronger drug and have more side effects. I'm just waiting out this initial period and hoping the Plaquenil takes effect. If not, I guess I'll try it. I just re-read the info. you included about Methotrexate and it says not to take folic acid with it. My doctor prescribed both. Hmm. I'm glad you included the side effects - now I know where the nausea is coming from.
Thank you.
pjarden said:
Melissa, just saw this post since I've been off-line most of the week due to my puppy, Mooch's, occasionally hankering for power cords and internet lines, and couldn't replace them til yesterday.
As for your symptoms from the Plaquinil, every one you're experiencing are listed as possible side effects in the online PDR (Physician's Desk Reference for Rx drugs). I've included the copy below:
What are the possible side effects of Plaquenil?
Side effects cannot be anticipated. If any develop or change in intensity, tell your doctor as soon as possible. Only your doctor can determine if it is safe for you to continue taking this drug.
Side effects of treatment for lupus or and rheumatoid arthritis may include: abdominal cramps, change in eye color, vision problems (e.g., light flashes or streaks), acne, anemia, lightening of hair, blisters in mouth and eyes, blood disorders, convulsions, diarrhea, nausea, vomiting, diminished reflexes or severe muscle problems including paralysis, dizziness, nausea, emotional changes, darkening of skin, lightenin of hair, skin rashes, headache, hearing loss or ringing in ears, breathing difficulties, heart problems, hives, itching, light intolerance, liver problems or failure, hair loss, loss or lack of appetite, nightmares, psoriasis, skin rash or inflammation , dizziness, extreme fatigue, weight loss.
It also mentions that one should avoid alcohol and any other medication that's processed through the liver; that it makes one more sensitive to light and sun; that it should be avoided in anyone with kidney or liver problems; and that it should be taken with a full glass of water or food.
I was also prescribed the initial standard SLE dose of 400 mg a day and had the same symptoms as you're having (and I'd never had mouth ulcers until taking it), plus terrible nausea and a lot of bloodwork problems they at first thought was leukemia. But it was the nausea that caused me to reduce my own dose by half and my muscle problems and fatigue have gotten much better, although it took a couple months to clear my system before I felt any improvement just recently.
I also take methotrexate, but it has many of the same side effects. I've included the pre-cautions and possible side-effects of it anyway below, since so many of us here take it and I've read posts about all of its side effects from our members one time or another:
What should I avoid while taking Methotrexate?
You should avoid getting pregnant or trying to become pregnant, breastfeeding, drinking alcohol, or receiving certain live vaccines.
What are possible food and drug interactions associated with Methotrexate?
If Methotrexate is taken with certain other drugs, the effects of either could be increased, decreased, or altered. It is especially important to check with your doctor before combining Methotrexate with the following: chloramphenicol, certain antibiotics, nonsteroidal anti-inflammatory drugs (NSAIDs), penicillin-type antibiotics, phenylbutazone, phenytoin, probenecid, salicylates, tetracycline, theophylline, trimethoprim/sulfamethoxazole, and vitamins containing folic acid.
What are the possible side effects of Methotrexate?
Side effects cannot be anticipated. If any develop or change in intensity, tell your doctor as soon as possible. Only your doctor can determine if it is safe for you to continue taking this drug.
Side effects may include: cancer of the lymphatic system (lymphoma); kidney damage; lower white cells, red cells, and platelets in your blood; liver damage; lung disease; infections; severe anemia; severe skin reactions and rashes.
Unfortunately, many of the popular infusions used for SLE are methotrexate-based drugs, so they all have similar side effects. On the upside, most negative side-effect tend to lessen after one takes either Plaquinil or methotrexate for a couple of months. But some people's reactions to either drug are so severe that they're either considered allergic to one or the other and stop taking it on the advice of their doctor. Since I also have polymysistis, a muscle-weakening disease, and a spinal condition that also causes inflammation, as well as SLE, I had to cut back on the Plaquinil in order to continue taking it. Thought I'd have to give it entirely until just last week (about 6-8 weeks after I cut back) when I started noticing how much better my muscles felt and how I no longer needed naps several times a day. Then I remembered that my first rheumy told me that it takes a couple of month's for Plaquinil and methotrexate to work on inflammation (& no one's sure how either of them do this exactly in RA or SLE), but if I miss a dose it would be no big deal since it also takes a long time for these drugs to clear our bodies after we stop taking them. So then it made sense to me why it took so long to feel any better after cutting back on it.
Hope this helps some. pax, pj
I think the comment might have gotten cut up somehow when I copied over from the PDR site because when I read about it there, I'm sure it read that folic acid supplements SHOULD BE taken along with methotrexate to alleviate stomach side effects, which is the reason both of my rheumys gave me when they prescribed 1000mcg of folic acid along with the drug.
India, eh? I'd be interested to know what your plans are there if you don't mind sharing them. As you might imagine, I don't get around much anymore, so any virtual travel I can finagle I consider one of my cheaper vicarious thrills. 
pax, pj
They say Plaquenil takes about 4 mths to get into your body and it took me about 8 mths to start working but 3 year later i did get those sores in the mouth and wow they are extremely painful! I was originally on Methroxotrate but had terrible side effects and came off it. My first rheumy used to switch pills every month, which was not the right thing to do. Meds need time to get into your blood stream and work. when i found my new doc he wanted me to be on them 4-6mths to see how they work. Been on them ever since. just have to get your eyes checked regulary.
I am sorry you are having all those problems! I get sores in my nose and mouth and on my lips. I have never not been on this drug. I could not really tell u what it does and doesnt do for me. I have been having lots of new symptoms. like this horrible rash I have all over. thousands of little blisters that turn into sores... and the itching.... lord have Mercie on me!... I have heared alot of good things about it though. I am on 400 mg as well. U need to get your eyes checked at least once a year and make sure the eye dr knowes u are on this drug!!!
Wow! It helped with your energy? One of its listed side-effects is "extreme fatigue," which is why I decided to cut my dose in half about 2 months ago and I'm just now starting to have a little more energy throughout the day. By the way, "rash" is another common side-effect of Plaquinil too.
So glad you sprang yourself from the hospital! Now you may finally be able to get some rest without anyone poking you or waking you throughout the night to take your BP and meds. Take care of yourself, sweetie. pax, pj
Rachel Simpkins said:
Plaquenil helped for a while with energy but I got rash :(
Sunshine, how long have you been taking Plaquinil? If it hasn't been long, you should know that al=ll of your latest symptoms are possible side-effects of the drug, so you may want to ask your doctor about lowering your dose or switching to something else.
Also, the drug sheet on Plaquinil advises that patients taking it should have their eyes checked every 3 months, and both my old and new rheumatologists recommend not going anymore than 6 months without an eye exam, so once a year might be pushing it. But if you're like me and lack insurance then you may not have a choice either. It's been over a year since I've had mine checked, but I haven't had any of the symptoms of eye problems like streaking lights, etc., which are also listed in the drug sheet, so I'm not too worried. pax, pj
sunshinespraypaint said:
I am sorry you are having all those problems! I get sores in my nose and mouth and on my lips. I have never not been on this drug. I could not really tell u what it does and doesnt do for me. I have been having lots of new symptoms. like this horrible rash I have all over. thousands of little blisters that turn into sores... and the itching.... lord have Mercie on me!... I have heared alot of good things about it though. I am on 400 mg as well. U need to get your eyes checked at least once a year and make sure the eye dr knowes u are on this drug!!!