View Full Version : Help! Need Answers!
02-25-2009, 02:45 PM
I have only met with my rheumatologist once so I did not get a chance to ask many questions. The doctor asked alot of questions and then disappeared and the nurse came in with the prescriptions and sent me on my way. I am taking plaquenil 200mg one pill twice a day, neurontin 300mg two pills three times a day, and prednisone 10mg four pills once a day. The doctor did say that the plaquenil takes a few months before you notice any improvement. I have been dealing with symptoms and many different specialists for almost five years. I kind of gave up when my insurance was cancelled without any notification to me from my old employer (a long story). I stopped seeing any doctors for over a year and then the symptoms started to get really bad again. My main complaints are severe tiredness, not improved with any amount of sleep. I also have very painful joint pain. My eyes are getting very blurry, which is a big problem because I love to read. I have swelling of the hands and feet, reynauds phenomenom, headaches, perspiring alot. I feel like a hypochondriac because every day I get up and something hurts and I don't feel like I can handle doing anything. I have been on the plaquenil since November, shouldn't I be starting to feel alot better? I just wonder if the plaquenil is not working for me. Can anyone give me any advice? Thank you in advance for any help or advice. I do not have a computer right now, so if I do not reply right away, that is the reason. Thank you for being here to talk to.
02-25-2009, 04:22 PM
For me the plaquenil kicked in at 3-4 months, for some it takes longer. Each and every person is different.
If you have another appointment scheduled, make a list of all your questions - if you can, make 2 copies, one you can read from and take notes on, and one to give the doc. It is such a help - for our foggy minds to have it written down is such a help! I've gone in with as many as 25 questions at a time - - I had one rheumy early on who just brushed me off and ignored the questions. I only saw him once and went to a different one. You deserve to be seen, to be listened to, and to have your questions answered as best as they can be answered.
Many of the others here will chime in soon, and give you more support as well,
02-25-2009, 05:08 PM
Thank you so much for your quick response! Oh and yes I do have a terrible time with the brain fog too. I seem to have so many symptoms that I forget half of them! Like I said I used to be so vibrant and busy. I worked as a nurse five to six twelve hour shifts a week, and had an active social life. Now I hardly leave the house. It is so frustrating trying to get diagnosed. I think I have seen ten different specialists up to now and I was really getting to the point of giving up. The plaquenil and prednisone has helped but I know the doctor is going to cut me off of the prednisone soon. Will the plaquenil eliminate the symptoms? Thank you for suggesting taking two lists of questions, I have never done that, and it is such a good idea, especially with the brain fog. Also this rheumatologist is a clinic doctor (as I have no insurance right now) and does not seem to care as much about his patients, so hopefully with a list I will get some questions answered this coming up visit. I am having alot of labs and xrays done prior to the visit too. I am fairly certain he thinks that I have lupus as the meds he has given me are given for lupus. They don't usually7 give neurontin for rheumatoid arthritis, so based on the symptoms I described, the high ANA, I guess it is lupus. I need to sign off right now but I will try to check back later, and I have completely lost my train of thought!! Again, thank you for writing back. I am so grateful to be able to talk to others with the same problems. I often felt like I was the only one in the world going through this. Talk to you soon.
02-25-2009, 09:32 PM
I'm sorry to hear of your trouble finding a diagnosis. Hang in there! Taking two copies of a list of questions is a great idea, especially to clinic doctors who are usually so rushed, being responsible for so many patients. The doctor will appreciate it, and it will help answer your questions. I also found that keeping a daily, or at least weekly log of my symptoms really helps to keep my perspective of my illness in order; it is hard when all the days start running together, especially with foggy brains!!
It is troublesome when the medications don't do what they are supposed to do. I would suggest taking control of what you can (since you can't control the medications). Getting some light exercise, if you are not getting any currently really helps. I find that just stretching and deep breathing for 15 minutes a day gives me back some energy and takes away some of the pain. Also making sure to eat at least some fruits and vegetables during the day really helps your body take care of itself.
You aren't alone! Hang in there.
the wingless one
02-26-2009, 12:20 PM
Hi Rose, I'm soo sorry to hear about what you're going through. I really hope your doctor will spend more time with you on your next visit since I know I definitely had a million questions when I was first diagnosed. I can relate to the joint pain, tiredness and swelling. Do you have high blood pressure? Protein/blood in your urine? For me my kidney involvement during my last flare caused really bad swelling, especially in my feet (I couldn't even fit them in my shoes for awhile). If so, you should talk to your doctor about lysinopril which helps with leakage, high bp and will help to protect your kidneys. Even though I'm not having any really bad kidney symptoms and my bp is under good control right now my rheumy elected to keep me on a low dose of it and when I was seeing a kidney specialist before he recommended the same thing.
When I was first diagnosed my doctor did not put me on plaquenil, the medicine that seemed to help the most and the fastest was definitely the prednisone which got rid of my joint pains within the first couple weeks of being on it. My doctors eventually put me on plaquenil after my symptoms were under control, they said it was more like an "insurance policy" than something that would actually bring me out of a lupus flare up. They also said that my tiredness was probably because I was pretty anemic when I first started seeing them and so they gave me some shots to boost my red blood cell production. This helped pretty quickly too (but the shots burn REALLY bad...it's definitely worth the pain though).
Anyway, not sure if any of that was helpful but I really hope your next visit goes well and you're able to get the answers you want from your doc.
03-08-2009, 10:48 AM
Thank you so much for writing me back. I can't begin to tell you how wonderful it is for me to have people to talk to that understand what I am going through. I also appreciate the advice you all have given me for my next appointment. I know that I am trying to rush things right now, I want the plaquenil to start working yesterday, and I know this is because I have been dealing with the symptoms for so long and being misdiagnosed. I am watchng my grandkids right now and they are starting to fight with each other so I need to run. I also do not have a computer right now, but I will try to right back as much as I can. As I said it is such a huge help for me to know there are others who understand. Thanks again for being there.
03-08-2009, 01:13 PM
Hi Rose, your fellow nurse with Lupus in Texas. I took Plaquenil it takes 2 months usually. I had to stop I had Macular Degeneration from it. I would suggest methotextrate instead if your having alot of joint pain, thats what I had to do it helps in about 8 wks too. Hate to say the sideeffects are worse sometimes then the Lupus. The Neurontin i took along time ago for nerve pain, it made me sleepy for about 2 months. I am only on prednisone right now. i stopped Methetextrate about 2wks ago. I also suggest some over the counter eye lubricaters, eyedrops for the blurry eyes. Lupus and Prednisone dries my eyes terribly making reading very difficult! Hope I helped.:cute:
03-08-2009, 01:47 PM
Hang in there Rose, you are not alone in your frustrations. Sorry you are going through such a wretched time.
I agree with Kat about the side effects. This week my doc wanted me to start on diazapam and after reading up on it I said thanks but no thanks. I lean more towards diet and alternative methods like herbs than the meds. I take them as we all must when we exacerbate to the point of organ damage or truly unbearable pain.
Of all the meds I have tried over the course of 25 years with lupus, my all time favorite is Provigil. I LOVE this stuff. A reumy at Loma Linda Med U gave it to me. It is approved for narcolepsy but off label it is used to keep people awake and alert during the day. I have had no side effects at all which is a rarity. It is expensive. I have to pay cash for it when my insurance runs out in October every year. I had to run up a $3,000 credit card bill because the quality of my life tanks without it. It runs about $400 a month.
Lupus can be a heavy burden but after finding this forum we don't have to carry it alone. Just having someone out there who understands makes all the difference for me.
sick n tired
03-08-2009, 09:52 PM
It took 6 months for plaquenil to start showing me some major support...I hope that the symptoms and discomfort abate before long
for you, hon.
03-14-2009, 08:21 AM
[Qi am so glad that i finally have someone to talk to about my luous and myositis and the things that are happening to me. Because even though the rhuemotologist i see calls me on my cell phone to answer my questions i know he is busy and there are always more to be answered. I have no one i know who has this diease so any info is helfull. BonnieUOTE=rosemactier;42754]Thank you so much for writing me back. I can't begin to tell you how wonderful it is for me to have people to talk to that understand what I am going through. I also appreciate the advice you all have given me for my next appointment. I know that I am trying to rush things right now, I want the plaquenil to start working yesterday, and I know this is because I have been dealing with the symptoms for so long and being misdiagnosed. I am watchng my grandkids right now and they are starting to fight with each other so I need to run. I also do not have a computer right now, but I will try to right back as much as I can. As I said it is such a huge help for me to know there are others who understand. Thanks again for being there.