I was diagnosed and treated for depression, anxiety, ADD and fibromyalgia before the question of lupus ever came into play. So I have been taking Adderall or Vyvanse for a couple years now. I have wanted to stop taking them because I know how bad they are for you and they honestly don’t seem to help much anymore. All they do for me is make it possible for me to get anything done during the day (which still isn’t much). When I run out or I'm unable to get my Rx filled, I can hardly get out of bed. I am currently working full time, I have a 3 yr old and my husband and I are recently separated (possibly moving towards divorce). I just got the diagnosis of SLE a couple weeks ago and have not started taking my Plaquenil yet. The rheumatologist agreed that stimulants are not a safe drug, but he didn’t tell me to stop them... He did say that the Plaquenil would help with the same symptoms as the ADD meds (as well as pain and inflammation and rash) but it could take as long as 6-9 months before the Plaquenil started doing anything. The side effects from the stimulants scare me as they increase my heart rate, raise my blood pressure, keep me from resting/sleeping, etc. but on the other hand, I am afraid that if I stop taking the stimulants, I will become completely unproductive and that the stress I’m under right now will make things worse or that fatigue will pretty much consume me (which I can’t afford for mine and my daughter’s sake). I’m trying to decide if the benefits outweigh the down falls. Any thoughts or similar experiences?
Alicia
A pharmacist can be a great source of information. I'm fortunate that my pharmacy is two blocks away and open 24 hours : ) I have asked their advice on meds many times, and they are a readily available resource that we don't use often enough in my opinion. No appointment needed.
I have two teenagers who are ADD/ ADHD, and one thing you say:
" honestly don’t seem to help much anymore. All they do for me is make it possible for me to get anything done" Sounds like they are doing something for you. You are going through alot right now, and I understand. A counselor was always recommended for my kids to manage their ADD.
I hope this helps a little and know that I feel your frustration and I have been taking plaquenil for two months now, and I feel an improvement in my fatigue.
Hugs to you!
Trisha
Thank you very much, Ann and Trisha. The care and concern helps just as much as advice. To my understanding, ADD meds are supposed to help with concentration and attention and they no longer do this (which was the reason for taking them). They do give me energy but make make my heart work over time. This didn’t phase me much before I knew about lupus. Now, I don’t feel like the minor energy burst is worth any extra compromise to any organs especially since i have started having chest pains and what I call, blood pressure headaches. I could go up on the dosage of the Adderall and get more out of it, but that would also enhance the side effects. I will definitely talk to my doctor about all of this but I was mostly wondering if anyone else faced this same issue and how it worked out for them. I’ve have only heard people talk about the negative side effects of Plaquinel and my “holistic” chiropractor pretty tells that antimalarials and immunosuppressants will kill me faster than any disease will. However, they also refuse to get their children vaccinated or take them to the doctor when they are sick and believe that certain things can be prayed away. I’m not saying they are right or wrong, just that I feel differently about those things so I try not to put too much stock into their advice, but when a person says something will KILL YOU… It doesn’t exactly make me want to try it. So anyway, I’m glad to hear that the plaquenil has helped… Thanks again and I hope you two are doing well also 
Hey Nicmic… I did start the plaquenil and I’m still taking the Adderall. I’ve only been taking the plaquenil for about 4 weeks so it’s not doing anything for me other than causing me to feel sick to my stomach all the time and i have noticed that I’ve been kind of depressed for the last 2 weeks but I can’t for sure that the plaquenil is causing it although that’s what I suspect. As far as the Adderall goes… I couldn’t function with out it. Days that I don’t take it are miserable. I have so much going on its hard to say what causes what or what helps. There does not seem to be any kind of interaction between the two medications though. My parents are helping me a lot and at first they didn’t seem to believe that “lupus” was real and maybe they still don’t, but they are helping me get through everything.
Hello Alicia,
Stimulants are used in anti-depressant drugs as i've took some over the years suffering with Manic depression/bipolar and OCD.
The side affects you mentioned "increase my heart rate, raise my blood pressure, keep me from resting/sleeping" from the Adderall or Vyvanse...you should have slowly been pulled off them slowly a good while ago, as those are side affects of the drugs.
I'm pleased your on the plaquenil it can take upto 6mths but when i first started i saw the affects from the drugs at nearly 3mths and took the druig in the day between my other meds and i was bad with side affects i pulled myself off it and was asked to go back on but in the meantime a friend told me to take it at night before going to bed which i do at 11pm and i had a few days of nausea and nothing after as it's classed as sleeping the side affects off...so it may help you with way.
Regarding the Adderall and it helps you, then it's worth still taking but i do know side affects that you mentioned can be a risk to your health.
Regarding taking plaquenil which is an anti-malerial drug and some drugs are Sulpha....your DNA should be taken first to see what your blood match to refering the drugs.
Love Terri xxx
Terri… As far tests and things like that go… I guess I’m just hoping that my doctors know they are doing (a faith I don’t like to have as I don’t really trust doctors). I worked for a psychiatrist for years and as a result I have been tried on every form of “mental health” meds out there! Happy to say I’m off all of them except for the Adderall which seems to have less side effects than any other stimulant I have tried. I would love to stop taking it, as I believe stimulants are dangerous. But like I said, the days I don’t take it are miserable. I don’t have the energy to move. Again, it’s hard for me to say what’s is causing what at this point as just about every aspect of my life (health, job, marriage, family, finances, etc.) are way too drama filled and it’s all wearing me out. I’m just trying to take one day at a time and find a way to afford to file for divorce as well as look for a better job that offers insurance which is proving to be quite difficult. I’m so overwhelmed right now that I don’t trust myself to make any major decisions so for the time being, I’m just doing what the doctors say. My rash is spreading (it was only on my scalp and is now on my face, chest and thighs) and it has me BEYOND terrified. I don’t like taking the plaquenil. I don’t think it’s good for us. I’m afraid it will do more harm than good but I’m 29 years old and about to be single again and I can’t have my face and body any more marked up than it already is LOL!!! So just hoping that things will start falling into place sooner rather than later. Hope you are doing well
Hello Alicia,
You have'nt got to talk to me about psychiatrists i was wrongly diagnosed through them at 18 and they caused me some damage for years on wrong meds...i've took the pharmacy where antipreesants are concerned so i know how you feel but if your ok mentally with the Adderall and it suits you to the extent of picking you up then all the better as my concerns was on the affects you was going through.
Thw whole lot is a great deal to deal with like your mentioning but please try not to stress as this maybe the course of your rash which maybe spreading...i know your not for the plaquenil but it is an excellent drug and a large many on the site can vouche for that as i have DLE and it cleared my skin issues when it kicked in please give it time to work and i'm touching wood for you it kicks in sooner than the time they say because like you say your only young.
I know it's hard but bare with issues take your daily life steady and try not to stress and hopefully things in your life will work out.
I've been in a right mess and my dermo was great but my rheumo would'nt treatment and i was giving up on that score until my dermo pushed issues furthur and on friday i saw a new rheumo and he was great and i have also a good specialist for my eyes besides regarding the sjogrens...so knowing this as boosted me mentally although the physical issues are still a daily trial.
Hugs & kisses Terri xxx
OK... I am actually freaking out right now. I said that I have felt "depressed" for the last couple weeks and thought it might be because of the plaquenil. Things got worse over the weekend. I was hyper aware of everything I'm dealing with and have begun OBSESSING over it and I really cannot stress that word enough! Last night my thoughts felt so out of control that I had to take a Klonopin (anti-anxiety med) and I was able to go to sleep. However, this morning its worse. I started crying on the way to work and CANNOT MAKE MY THOUGHTS STOP!!! I was at the intersection just before my work waiting for the light to change and I almost drove through the intersection... I don't even know why. I feel like I'm losing my mind and the only thing that could be causing it is the Plaquenil. I take 400 mg. A 200 mg tab in the morning and one in the evening with dinner. I have to stop it. I can't take it anymore. Do you know if there are any bad side effects to stopping it "cold turkey"? Is it something that you have to slowly stop taking? I'm going to try and reach my rhuematologist but I don't know if I will be able to get ahold of them. I feel completely out of control and it's scaring me.
Alicia,
Your hypo what your going through is'nt off the plaquenil and if your becoming obsessing over issues just watch you have'nt got OCD forming with your ADD as OCD is bad to have in many issues as both these illnesses go hand in hand with one another.
The plaquenil did cause me to have panic attacks bad, breathing problems, the room felt like it was closing in on me, my hubby could'nt go fare, then bad palpatations.
You can't pull off plaquenil just like that...i did it and i was in a right mess with shakes it's an addictive drug, so i went back on and chipped at the tablet daily and after 7 days i came off it ok because pulling right off you'll make yourself ill...i was taking mine then in the day like you but someone like i've stated said take the 200mg at night...i restarted it and i had a few days of nausea and it stopped nothing after that and this new rheumo as just upped me to 400mg what your taking and i asked him if it was still ok to take 400 at night and he said yes and i had 2 days of nausea and it's stopped.
Try your hardest to take the 400mg at night before you go to bed, as your sleeping the side affects off because if you can that drugs excellent.
Thank you so much for your advice... I called my doctor and spoke with his nurse and she said she thought I was having a panic attack... So I had to call my dad and have him bring me some Klonopin to work. I took it and I'm feeling better. I do have OCD :( and generalized anxiety disorder and a history of depression but I haven't had any problems with these issues in so long... I just feel like the plaquenil has something to do it. So you suggest taking both tablets (all 400 mg) at night? I was afraid that would make the stomach upset worse. I can try that... I'm just afraid of feeling like I can't function. I feel like the psychiatric meds I used to take are the reason I stayed in an unhappy marriage for so long because they made me just kind of accept things for how they are. I know I need treatment for my OCD but again... I just don't like meds. Thank you for talking to me... It has been a stressful and scary morning and I'm so thankful to have people to talk to that actually know what they are talking about. I will try to give the plaquenil some more time and start looking for an alternative to the stimulants. Thanks again, and take care!!!
Hello Alicia,
Yes it sounded like a panic attack or even anxiety as they're both identical but as long as the Klonopin carmed you that's the main thing...i'm on valium to help me.
I can't get help for my OCD as i've been told that nothing can really help it and as i get older it gets worse, it's one living nightmare and the manic depression.
I will admit the plaquenil may have caused the panic attack just going on it because it caused it with me and i do suggest taking it at night...i have my main meds at 10pm and take the 400mg at 11pm and hit bed about 1am.
I have'nt had stomach upset with the plaquenil so you should be ok....Alicia look at life like this, none of us like taking meds unless there things that are healthy like vitamin pills etc because i've had 26yrs of being highly dosed and still am 4 times daily but i know if i had'nt got them, i'd be in a right mess.
See how you go with it and you know your own body and mind and if your not comfortable talk then with the specialist plus it's a drug which is'nt a steriod either.
All my love Terri xxx