Corticosteroid pulse therapy Patient Views

My brain fog has improved. I was given an iv steroid called medrol or methylprednisolone which I got infusion treatment for 5 days. By the third day of the treatment the brain fog was gone. My leg pain also improved. Almost a year later the brain fog has not returned. I hope this helps

I wouldn’t recommend this for everyone but it was a clue to figure out some of the symptoms. I was admitted to the ER for stroke like symptoms, brain fog, confusion, dizziness when standing up, and fatigue. Doctor decided to put me on a high dose of this steroid, 1000ui per day for 3 days to attack any inflammation I had. When I woke up, it was the most normal I had felt in weeks. It also reduced this pressure in my head. I had to taper off for two weeks and see side effects, but, I’ve been mostly clear since then, have not had POTS symptoms and pointed us in the direction of inflammation.

Methylprednisolone pack. It got me from bed bound to active again. I had all the symptoms and I got 80-90% better.

Now on LDN 1.5. Seems to help with the sluggishness/fatigue.

Has anyone here ever been recommended IV corticosteroids (1 gram per day for 5 consecutive days)?

Have you experienced severe/permanent side effects?

My doctors are suggesting it for my dysautonomia (autonomic SFN), but I'm feeling quite hesitant about it, to be honest.

I started on 24mg of methylprednisolone, which will taper until I’m off…so far my symptoms are still gone. I also take vitamins and ferritin. No difference in any symptoms until I started steroids.

I was bed bound for months and unable to walk. I also had issues with my vocal cords due to severe inflammation so I was unable to speak properly for a few months and no one could understand me. I had severe headaches, brain fog, tremors, extreme fatigue, no appetite, weight loss, pain all over but intensely severe pressure in my lungs, fullness and buzzing in L ear, syncope, memory/cognitive recall issues, seizures, insomnia, anxiety, SVT, lesions found on my brain, scarring in my lower lung bases and basically ready to give up! My family and friends didn’t understand and still most can’t grasp LC since they haven’t experienced it. Most just secretively think LC doesn’t exist or it’s just mental health issues after covid from stress on the body….I even secretly wished one of them would get LC just so they could understand but that was the petty side of me coming out!

I worried endlessly and saw my PCP, neurologist, infectious disease, allergist, cardiologist, ENT, research, hematologist, electrophysiologist, orthopedics, rheumatologist, pulmonologist and physical therapy. I refused to try stuff that random ppl recommended due to my allergies but I did try a few things recommended by licensed healthcare providers who knew my situation….not much worked if anything but I was/am deficient in a few vitamins/electrolytes so I addressed that with supplements and infusions. However, the one thing that helped me recover to where I’m currently at is a corticosteroid similar to prednisone but stronger by the name of methylprednisone. It has truly changed my life! Coincidentally, I took it for something else (maybe but I think that issue started with LC) and I noticed after a cpl weeks that my LC symptoms started improving then disappearing. I quickly searched if methylprednisolone cures LC and several research articles as far back as 2021 came up indicating that in a select few it can basically wipe away symptoms. I’m just thankful that so far, I’m one of the lucky ones and other than slight pain in my lungs & bones when I absolutely overdo it plus, fatigue (which can also be severe if I overdo it) all of my symptoms have resolved and I look and feel great!! I’m still taking the medication but I’m very concerned that once I’m off of it that all of my LC symptoms will return but this isn’t a drug that you want to stay on forever. The research articles stated 8-12 weeks on the medication is the sweet spot, so good luck and happy recovering….don’t give up!

I had all of the above plus lesions on my brain, seizures, vitamin deficiencies, tremors, low oxygen, syncope, severe weakness all over, inability to walk….you name it! 90% or more of my symptoms have just recently resolved while taking a high dose inflammatory. After doing some basic research, I noticed some studies from 2021/22 that referenced taking an anti-inflammatory (Methylprednisolone) for 8-12 weeks to help some ppl with LC…so far (knock on wood) it appears that I’m one of the lucky ones that it’s nearly resolved the majority of my symptoms. The scary part is wondering if when I go off of the medication IF the symptoms will all come back. Good luck and don’t give up!

I felt the same way 6 months in after covid. I was lucky to have a doctor prescribe me methylprednisolone pack and it got me out of the worst of it. I still have flares but nothing like it was before. I got my life back to functioning again. Look it up. It's a very common drug for autoimmune issues and that's what seems to be affecting the body with long covid. Like the body's immune system gets dysregulated due to covid.

• https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10956230/ • https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8956351/#:~:text=Compared%20with%20no%20glucocorticoids%2C%20methylprednisolone%20treatment%20in%20COVID%2D19%20patients,prolong%20duration%20of%20viral%20shedding. • https://www.tucsonsentinel.com/opinion/report/072724_long_covid/long-covid-puzzle-pieces-are-falling-into-place-8211-picture-unsettling/ • https://dellmed.utexas.edu/news/two-new-studies-by-ut-experts-unveil-key-insights-into-long-covid

I experienced a rare life threatening drug rash and allergic reaction while taking Lamotrigine when trying to transition from lacosamide. The patient was hoping by switching seizure meds their brain fog and neuropathy in hands and feet wouldn’t be so bad. Their body started to get covered in red blotchy rash and their lips started to swell. On the first ER visit they were treated with Benadryl, along with an injection of Methylprednisolone 125 mg steroid. On top of that, they were prescribed 60 mg of prednisone daily for five days, which they started taking the day after the first injection. The next ER visit two days later when the rash continued to worsen, they received Dexamethasone 8 mg steroid injection. Unfortunately, the high dosage of steroids caused a major flare-up of their long COVID symptoms, undoing much of the progress they had made in their recovery since April.

To help with their recovery after this setback, they added several supplements to their routine: Magnesium L-threonate, turmeric, an Omega-3 blend, a B-complex, and Vitamin D 5000 IU. They’re hoping these vitamins and supplements can provide some short-term therapeutic relief as they continue to manage their symptoms. They also dabble with zyrtec once in a while but don’t like the way it makes them feel. They take ibuprofen a couple times per week but try to limit their intake. They also take excedrin migraine when things get bad and that seems to help a-lot.

They still can’t believe they started having seizure discharges back in April. They never had any major health issues their whole life and had a pretty active and decently healthy lifestyle.

Has anyone else had flair ups from taking steroids?

It is a bit sad hearing doctors tell you to stop taking something that is helping you. Unfortunately, I believe that is the sentiment of a lot of doctors. They are pretty clueless. The patient has been sick since 2020 and has beat back the grim reaper a few times. Last year the patient was treated with medrol or methylprednisolone infusion treatment. The patient's brain fog was gone and hasn’t come back. The patient is much better than they were a year ago. The patient's sleep is still off and they still have some leg issues but they take prednisone and it is manageable. The patient does have a friend that cannabis helped as well.