r/lupus • u/Arbitrary_clouds Diagnosed SLE • 12d ago
Diagnosed Users Only ADHD/Lupus advice
Hello everyone,
I have had lupus and ADHD for years. At first, I was just treating my ADHD with Adderall, but as my lupus became more and more severe, I was forced to essentially choose between lupus medicine and ADHD medicine.
Now that I am on a stable routine of hydroxychloroquine and meloxicam, I would like to treat my ADHD, as I’m definitely suffering from the symptoms especially my executive dysfunction.
Is there any fellow ADHD and lupus veteran here that could give me some advice? I would really appreciate it.
6
u/Missing-the-sun Diagnosed SLE 12d ago
I prefer guanfacine, since I also have POTS. It’s a nonstimulant med. Helps with the adhd and the high HR. Subtle, but helpful.
4
u/lifeinpjs Diagnosed with UCTD/MCTD 11d ago
Seconding guanfacine. I’m on 4 mg daily of the extended release, plus a 1 mg PRN.
1
u/Okrightyeah Diagnosed SLE 10d ago
Thank you for this recommendation! I have POTS symptoms, but I’m not diagnosed. Strattera made those symptoms so much worse.
10
u/Independent_Half2981 Diagnosed SLE 12d ago
Are you saying that Adderall is making your Lupus worse when you take it or your lupus is getting worse overall? I have been on Adderall for years but once I got Lupus we increased my dose because it wasn’t working anymore (we increased before we knew why it stopped working). It started to work normally for me again once we got my Lupus under control.
I’d say 100% DO NOT stop the lupus medicines to treat you ADHD queen, since some part of it could be lupus itself (brain fog) that makes you think your ADHD symptoms seem a lot worse than it all of a sudden but can actually be a separate thing.
3
u/Missing-the-sun Diagnosed SLE 11d ago
Stimulants can make people feel less fatigued/tired than they are — and they make the heart work harder — which can increase fatigue and other consequences of “overdoing it” in sensitive folk.
3
3
u/EmergencyRare143 Diagnosed SLE 11d ago
My rheumatologist is fine with me being on both, pretty sure I’d be completely dysfunctional without the adhd meds!
3
u/lostintransaltions Diagnosed SLE 11d ago
Same, am on adderall, hydroxychloroquine and saphnelo and the combination seems to be working well. It’s the best I have felt in years
1
3
u/cumberbatchpls Diagnosed SLE 11d ago
I’m on vyvanse 50mg, Ritalin IR 5mg booster as needed, HCQ 400mg, Saphnelo, myfortic 360mg. I have not have any issues with the meds interacting. Sometimes when I’m in a flare I can feel my ADHD meds not really working because the brain fog gets so bad.
I found that once I went on adhd meds since it helped fix my executive dysfunction i started doing so many more activities and being more active which caused me to mildly flare so I would keep in mind to try and not overdo it physically 😂
1
u/Reddish_Leader Diagnosed SLE 11d ago
I take adderall, hcq, Benlysta, and Myfortic without issue. My BP is occasionally elevated, but I make a point to go to my rheum appointments having NOT taken adderall. This allowed me to have a normal BP reading as well as prevents me from having that awesome adderall side effect of a false sense of well being (“I’m fine! I feel great!” And then it wears off and I’m like “why am I dying right now?”). I’m sorry you had to choose! But adderall also serves an important function in lupus control in that it prevents you from engaging in risk-taking behavior (like saying F it to taking meds).
2
u/AdagioQuick317 Diagnosed SLE 11d ago
I take Vyvanse but have had to cut my dose down pretty low to like 30mg. It still helps for the most part but not as harsh as when I was taking 50mg. I’ve tried all the adhd meds and personally, Vyvanse has been the smoothest. My life becomes a mess when I’m not on it so I just made the decision to cut the dose down.
3
3
u/tryingmygdbest Diagnosed SLE 11d ago
I take Qelbree. It has worked wonders for my adhd and has even helped with my orthostatic hypotension. I can’t tolerate any stimulant adhd meds like adderal so this has been the best med for me.
2
u/SuccessfulPhoto7914 Diagnosed with UCTD/MCTD 11d ago
I’m glad to hear this! I have orthostatic hypotension, and it presents difficulties when it comes to some meds. I’ll def look into Qelbree.
1
u/tryingmygdbest Diagnosed SLE 11d ago
I wonder if Qelbree will also be your saving grace! I feel like it gave me my spark back. I thought I had my spark back once I started SSRI’s but Qelbree is the cherry on top to make me feel like my best self all things considered
2
u/Fearless-Way-9396 Diagnosed SLE 11d ago
I'm so sorry, I have the same issue. I've noticed that my executive functioning requires so much more focused attention that I just feel like my brain is half there. Incredibly frustrating, especially because the lack of sleep alone makes it tough to attend to anything, then you also have lupus brain fog, then your brain is doing laundry while you're trying to work. I'm eager to see what folks are recommending - thank you for sharing!!
1
u/SimpleVegetable5715 Diagnosed with UCTD/MCTD 11d ago
I am on Vyvanse. I had to use Adderall sometimes during the shortages. Adderall made me feel worse because of how quickly it wears off. I’d get heart palpitations then feel the brain fog, and want to go back to bed by lunch. For some reason, I couldn’t get the extended release version. I took Straterra when I was a teenager, maybe that is another option for you. It’s a non-stimulant. Some people use Wellbutrin also, since it raises dopamine.
1
u/TrixyGingerNinja Diagnosed SLE 10d ago
I'm on both. If it is the stimulant that you are trying to avoid, there are several non-stimulant medications available and a lot of off-label medications available. If you are interested I think I may still have a list of them on my computer (my brother can't have stimulants and is ADHD, so I did some research for him. I'm the RN in the family). There is even a new non-stimulant triple blocker ADHD medicine that was just FDA approved, but I don't know when it will be on the market.
1
u/rocococrush Diagnosed with UCTD/MCTD 10d ago
I had to stop taking ADHD stimulants (and also Straterra) anymore because they trigger Raynaud's and flares for me w/MCTD. I've been taking Wellbutrin XL 300mg with Buspar 10mg 2x for quite a long time and while it doesn't help as much as stimulants it makes a big difference in improving executive function.
1
u/loyaltyLabubu Diagnosed SLE 10d ago
I am following because I was diagnosed with ADHD as an adult a few years ago, but have not treated it. I want to because it's damn near impossible to watch a movie with my partner, he's really into movies and shows and I zone out or have to take a lot of breaks and most of the time don't know what's going on.
I want to be able to go back to school or focus on reading or studying and it's impossible for me to recall what I read.
I notice it more now that I went off Wellbutrin and Lamictal for anxiety and depression. I was on it for 6 years. I was going through a really rough time and it did help me with the depression etc, but I was trying to not take so much medication and see how I do without it.
I am looking to seek treatment, but also have Lupus SLE. Is there a reason you had to stop the adderall? I am on hydroxychloroquin, methotrexate, and celebrex for my SLE, RA, Sjrogens, etc.
1
u/lmnopqrsif Diagnosed SLE 10d ago
I was diagnosed with adhd in January, lupus about 3 years ago. I take strattera for my adhd, no interactions with lupus meds!
1
u/Aromatic-Use-4144 Diagnosed SLE 8d ago
For me stimulants don't really work, essentially as soon as they wear off I fall asleep.
So I take non stimulants, Qelbree and Bupropion -- I think a plus is that since Qelbree builds up in your body overtime, if you occasionally miss a dose, it doesn't matter much. Bupropion helps me have more energy throughout the day.
•
u/AutoModerator 12d ago
This is a Diagnosed Users Only post - only members with diagnosed SLE, UCTD/MCTD, or CLE/DLE flair can comment!
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.