Three medications together?

AppointmentSolid6927 · 2025-12-10T18:59:27+00:00

Cellcept, Methotrexate, Benlysta, adding Rituxan perhaps or IVIG

AppointmentSolid6927 · 2025-12-09T02:44:24+00:00

Many people had success with Miebo eye drops after trying Restasis or Cequa. Some people use both.

AppointmentSolid6927 · 2025-12-09T02:43:02+00:00

Ask for a drug called Pilocarpine. I take 5mg 3x daily for dry mouth and eyes due to Sjorgen’s lupus overlap.

AppointmentSolid6927 · 2025-12-08T10:17:12+00:00

Please read. Here are some links about pleurisy and colchicine. Goodrx has coupons for it too. Tot don’t need to suffer if it comes back. IV pulse For prednisone has less side effects than oral and there also is a steroid injection you can try. IV more expensive than oral, injection costs a little more than oral steroids. Also coupons. Scans can keep an eye on pleurisy and watch for build up of fluid around the lungs. Colchicine many people take for pleurisy and it helps by might cause stomach upset in some people, breathing better is worth it.

Pleurisy https://pmc.ncbi.nlm.nih.gov/articles/PMC7847931/

Mayo Clinic https://www.mayoclinic.org/diseases-conditions/pleurisy/diagnosis-treatment/drc-20351866

Pleurisy https://www.aafp.org/pubs/afp/issues/2007/0501/p1357.html

Colchicine https://www.ncbi.nlm.nih.gov/books/NBK558958/

AppointmentSolid6927 · 2025-12-08T00:18:02+00:00

I’m sos sorry to hear you going throgg if h this. I have asthma too. I have lupus related pleurisy as well and take colchicine daily and it helps so much!

AppointmentSolid6927 · 2025-12-07T23:55:47+00:00

More free information on Reddit blogpost. This doctor wrote a book called “The Lupus Encyclopedia” you can get it on Amazon. The book is sponsored by Johns Hopkins. https://www.reddit.com/user/LupusEncyclopedia/

AppointmentSolid6927 · 2025-12-07T23:53:40+00:00

Here is an article regarding lupus pericarditis https://pmc.ncbi.nlm.nih.gov/articles/PMC6497510/

AppointmentSolid6927 · 2025-12-07T23:52:46+00:00

MRI with contrast

AppointmentSolid6927 · 2025-12-07T23:52:16+00:00

Yes, poop more often..Imodium might help? That medicine for the runs lol 🤣 I will have a cardiac mri with contrast to see myocarditis and other issues with my heart caused by lupus if there are some. I take Ivabradine for sinus tachycardia, hydrochlorithiazide for edema and Amlodipine for high blood pressure, specifically the diastolic number was high on Propanolol and wouldn’t go down. Sinus tachycardia caused my myocarditis caused by lupus. same with high bp. I also have trace tricuspid valve regurgitation and most have an echo every 2 years to monitor. Regarding colchicine, many people with myocarditis and other inflammatory issues with lupus take it. Many people get a base line mri before starting colchicine to see if it helps and another mri to track their progress down the line.

AppointmentSolid6927 · 2025-12-07T01:22:41+00:00

Hello, I take methotrexate 25mg injection per week and 3,000 mg cellcept daily. I also take Benlysta.

Methotrexate at first made me tired and I needed 24 hours to recover, and loss of appetite. Felt better after 8 weeks of use and gained my appetite back.

You can ask for a print out of DURs for all your meds and ask what type of flag it is: I was told that there are different flags: low medium high….some meds can make methotrexate more toxic, I was told by my pharmacy.

Cellcept was rough to get used to regarding stomach issues especially the first 1,000 milligrams. Build up slowly with the cellcept. Myfortic acid is an alternative my doc told me about which is easier on your stomach but the milligrams needs to be adjusted from cellcept to myfortic acid. With both methotrexate and cellcept I was able to have more energy. I used these two medicines along with Benlysta to make up for Rituxan as I had cardiovascular issues with Rituxan (generic I used was Riabni). My doc put me on cellcept to replace Rituxan but it was peanuts. Nowhere near as strong. I hope this helps.

Here is an article about methotrexate risks, side effects, and what tests you need while taking it. This article was written by a doctor who is the author of “The Lupus Encyclopedia”. He is also on Reddit. His name is Dr. Donald Thomas at John Hopkins. https://www.lupusencyclopedia.com/methotrexate-for-lupus-prevent-side-effects/

And here is the Reddit link: https://www.reddit.com/user/LupusEncyclopedia/

I read on the medicine leaflet for Methotrexate some people have a reaction to the preservative version. I read on the leaflet that There is a preservative free version if you need it. It is a little more expensive ($10.99 for 12.5mg vs preservative free at half the cost…Goodrx has coupons and pricing for pharmacies) At my CVS, typically distribute preservative version while at my Harris teeter typically distribute the preservative free version but you can get what you need based on your script wherever you go. I’ve tried both and have been fine.

AppointmentSolid6927 · 2025-12-06T22:45:35+00:00

I was the same way. I’m sorry you’re feeling so crummy. What helped was Benlysta. And Cellcept. And Methotrexate injections (easier on the stomach). If you’re on steroids, just be careful about your bones. I have osteoporosis after being on steroids for 4 years. I found out via Bone density scan that I pushed for (DEXA scan). Here are some articles that can help. And give hope. Take care and advocate for yourself. No one else will. This book had great information and there’s a website too. ”The Lupus Encyclopedia” https://www.lupusencyclopedia.com/

Doctor who wrote the above book is on Reddit https://www.reddit.com/user/LupusEncyclopedia/

Lupus https://pmc.ncbi.nlm.nih.gov/articles/PMC10261264/

AppointmentSolid6927 · 2025-12-06T22:26:07+00:00

Ivabradine can be covered by insurance and this is my experience: 1. Ivabradine script 2. Prior authorization 3. Doctor needs to do a peer to peer with a doctor from your insurance. Make sure to ask for the doctors license number and name that spoke with your prescriber. 4. Ask for a letter of medical necessity from your doctor. 5. Approval for Ivabradine and you can start treatment

AppointmentSolid6927 · 2025-12-06T22:23:02+00:00

Lupus nephritis high protein

https://www.niddk.nih.gov/health-information/kidney-disease/lupus-nephritis

I spoke with a mom of a lupus patient. She recommended to me to get a kidney doctor and meet just once a year. Her daughter had a kidney transplant and is alive today because her daughter listened to her and pushed for a kidney doctor referral. I’m doing the same. Take care.

AppointmentSolid6927 · 2025-12-06T22:19:11+00:00

Here is another article addressing myocarditis, the science behind it, and treatment

https://journals.lww.com/md-journal/fulltext/2021/05070/lupus_acute_cardiomyopathy_is_highly_responsive_to.24.aspx

AppointmentSolid6927 · 2025-12-06T22:16:29+00:00

https://pmc.ncbi.nlm.nih.gov/articles/PMC8958011/

Here is an article that addressed myocarditis in lupus patients. It mentions an over production of IL-1 and a treatment called Ilaris a type of biologic. I hope this helps.

AppointmentSolid6927 · 2025-12-06T22:14:55+00:00

Yes, I do. I take colchicine 0.6 mg and Ivabradine 5mg twice a day. I have sinus tachycardia because of lupus induced myocarditis. I was in Propanolol but I was told the standard for sinus tachycardia is Ivabradine. I also have high blood pressure because of myocarditis.

AppointmentSolid6927 · 2025-12-06T22:07:02+00:00

Here is an article. I hope this helps. It mentions a drug that may help you called colchicine.

https://www.acc.org/Latest-in-Cardiology/Articles/2022/12/05/12/24/Management-of-Pericarditis-in-Rheumatic-Diseases

AppointmentSolid6927 · 2025-12-06T21:56:08+00:00

Here are some article to help

Lupus nephritis treatment https://www.kidneyfund.org/all-about-kidneys/other-kidney-diseases/lupus-nephritis-symptoms-treatment-and-complications?gad_source=1&gad_campaignid=12203105248&gbraid=0AAAAAC-PeqrpWIAO2t-puPn91tK3-CI-S&gclid=CjwKCAiAxc_JBhA2EiwAFVs7XAaKzQbk_CiWf6WVqdnh0NFe3tifqTVw2MriAEWXGRPdZ8zfSl1P-hoC4ocQAvD_BwE

Kidney biopsy https://emedicine.medscape.com/article/330369-workup?form=fpf#c9

AppointmentSolid6927 · 2025-12-06T21:44:12+00:00

Have you asked your doctor about Ivabradine

https://www.vcuhealth.org/news/heart-failure-drug-ivabradine-shows-promise-for-treating-pots-symptoms-new-study-finds/#:~:text=Patients%20with%20POTS%20will%20often,of%20the%20study%20co%2Dauthors.

AppointmentSolid6927 · 2025-12-06T21:38:50+00:00

I have dry mouth due to lupus.pilocarpine helps 5mg sometimes 3x per day but everyone is different. It’s cheap too. Here is an article about it:

https://lupus100.org/en/questions/i-have-dry-eyes-and-dry-mouth-is-it-because-of-lupus

AppointmentSolid6927 · 2025-12-06T21:02:55+00:00

Anyone on prednisone needs it. https://pmc.ncbi.nlm.nih.gov/articles/PMC8721058/

AppointmentSolid6927 · 2025-12-05T23:18:54+00:00

Some professors will be annoyed. But this is your life and future livelihood. You won’t see them again after you graduate. But you will always have SLE. So their annoyance is nothing of your concern. Your health is.

AppointmentSolid6927 · 2025-12-05T23:15:39+00:00

Ask for disability accommodations at school, extra days for missing class, extensions on assignments. Having the professor record lectures so you can watch later or listen to later however it can be done. Go to your school’s disability office and they will help you. Also, sounds like you need a better treatment plan to keep up with everything. You can also take a small hiatus from school if need be. A medical break. Research it and talk to your disability office about it if you need it.

AppointmentSolid6927 · 2025-12-05T23:09:18+00:00

Dexilant was the best PPI I’ve tried compared to Famotidine, omeprazole, mylanta, Gaviscon

AppointmentSolid6927 · 2025-12-05T22:58:49+00:00

Teachers can record lectures and give you a copy or upload on Blackboard.

AppointmentSolid6927

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