In the past few months, maybe last year, I had a tel appointment with my neurologist. I believe he was the lead neuro in my MS doctors team. We went over my regular medication, and I slipped up by telling him I take methylprednisolone on an as needed basis. Well, he goes and puts on my notes to not prescribe me any going forward. He told me it's just a placebo! 🤬 I would have been alright with not taking the steroid had it not been for my worse leg not wanting to move, a feeling of tiredness from behind that knee, and my foot dropping so much I don't trust myself to even do mine and my husband's brews in the morning! Bit of fyi: when I was in hospital in 2021 for 27 days, I had to have IV methylprednisolone, and that allowed me to get out of the bed, and meet my husband at the main entrance (covid restrictions meant he wasn't allowed in). I even took a pill last year on the morning of our wedding, just so I was able to walk with a stick to the front with my stand-in father.
Can anybody else relate?
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Cwright170994
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Not quite the same situation, but my first and only time using Solu-Medrol for an exacerbation had me raving to my neuro about how great it worked. His only response was that I'd better not have any more attacks because he wasn't going to keep prescribing it. All I could think was "WTH?".
I’m sorry this happened! Maybe this will shed light; So my Dr. explained that over time, the steroids lose their effectiveness if they’re taken consistently. He only wants me on them for an exacerbation (given in high doses) and limited in lower doses. He said if we lose the effect of the steroid, there’s not much to do for a relapse. Interestingly, my grandmother had MS diagnosed in the 60s/early 70s and the only treatment was steroids.
I only take them as and when needed! It may only be 5-,10mg! I think the fact that I'm loosing my ability to walk, and thus need a wheelchair wherever I get out of my house, sounds like enough of an exacerbation 🫣
Exactly! But, I've managed to buy some from India, and I'll be speaking to someone in October or sooner to find out their reasoning 🤔Don't worry, this is the website for the company I'm buying them from:
Yes, I can, Cwright170994 . I was on monthly IV methylprednisolone when I was first diagnosed to help with my walking. My neurologist recommended it. Why would they not want you to take it? My neurologist told me that I couldn’t be on it for an extended period of time because of the side effect of having brittle bones. But you are taking it only on an as needed basis. Keep Smiling
That's brilliant how you were on monthly IV infusions when you 1st started 👏 I was just started on copaxone, and it took them around 6 years to get the evidence it wasn't working 🙄I have no idea why he didn't want me to take anymore 🤷♀️ I know about the side effects, like the brittle bones and insomnia, but I just want a "normal" day 🙏
I was on Copaxone when I was first diagnosed as well, Cwright170994 ! My neurologist also recommended monthly IV methylprednisolone. Other than a sleepless night after the infusion, I felt like it helped me so much! Is your neurologist recommending something else for you to assist with your walking, like Ampyra?
Nope 🫣 he did get me referred to a physio, and the only thing she managed to do was get me a rollator, a lycra bodysuit type stuff, and exercises I can do at home. Doesn't help when you're so tired every day that you don't have the energy to do the exercises, and you've still to stretch out the lycra! I used my rollator this morning to get bloods done, and my legs were screaming at me 😳In hospital and on the IV steroids, I didn't really have the sleepless nights, apart from when a woman across from me was talking really loudly to her family who live in Brazil or somewhere, and ignored EVERYONE, including nurses, telling her to shut TF up 😒 at home, I did struggle, but I've got lavender pillow spray and a good night time routine to help me get through it.
Well, that’s a start, Cwright170994 ! I would do that and I would keep a daily journal to see if it works. Over time, you should see some progress. Let us know how it goes, and best of luck!
IV steroids are usually a gram, or 1000 mg of methylprednisolone for three to five days. The oral version comes in a wide range of doses. Doctors often try to balance the risk vs. reward when prescribing steroids, because they have side effects and risks, particularly their effect on bone mineral density - they cause osteoporosis. They also affect your immunity. I really understand wanting to feel better, but I think we as patients need to be cautious with self-medicating and try to work with our doctors. I personally would not feel safe taking a medication that my doctor was not aware of. Doctors, in turn, need to explain the risks to us, as we aren't idiots. Armed with the correct information, I believe most of us are capable of understand why we can't always have the medication we'd like.
After I was in hospital back in 2021, they wanted me to titrate off methylprednisolone because I had it IV during my stay. I could tell that it definitely impacted my walking ability when I was coming down.My previous neuro and MS nurse understood that I don't take it unnecessarily, and that my WBC counts were still within the safe range.
My current neuro did a telephone appointment with me on my 1st wedding anniversary, of all days 🫣 I remember asking him why he did not want me to take it and when needed. All I got back from him was that it was a placebo! Since then, I've had a few times where I've needed to be ambulanced, or my husband taking me to A&E! The last one I remember was me waking up not being able to move or bend my right leg and my husband having to help me get downstairs, and watch me force my leg to bend so I could sit on my wheelchair. The doctor that saw me that day wanted to give me methylprednisolone, but then he saw the note on my record. I'm not an idiot with my meds, especially steroids, but it's really doing my tree in at how they think they can rule us over what works for us. I look up the drugs on my prescriptions using the British Nursing Formulary, so I know the pros and cons of them.
Charlotte, I know you have a nursing background, and this is a medication you've been on previously. I am concerned, but no, you are most definitely not an idiot! 😊
This most recent doctor really does sound like a jerk, and I'm sorry I didn't say so in my post - we are here to support each other. It's lousy that you can't just have a conversation with the guy, and perhaps that was the more important point of your post.
I don't know how the NHS works as far as getting a new doctor, but I hope that you won't be stuck with him for long. You shouldn't have to self-medicate to get the meds you need. I wish you the best. ❤️
He's definitely better than the one I had before him, who specialises in dementia/alzheimers 🙄 my 1st one, though, was amazing! He only had to move to a different trust and leave the dementia/alzheimers one 😕 I thought I'd be alright with these new lot! My 1st appointment with them I saw a doctor that had trained under my 1st neuro, so I think he looks up to him. However, the boss-one of their group of neuros was the one to put "no methylprednisolone" in my notes. I can't really go any other place. I've moved out of the area of the 1st health trust, and the closest hospital to me is in the same trust as this new one 🫣 take East Lancashire Health Foundation (the 1st 2 neuros) to Northern Care Alliance (my current ones). I only had to move 30 mins south and get my care moved closer to my now home. I'm hoping he wouldn't be around for long 🙏 as mean as it sounds, but the guy needs to move out of the area.
I’m sorry about what he said and I don’t agree with him all medicines have a different effect on different people! Not same thing but as iwasleaving my neurologist he threw/shoveda rx for IV steroids as i was leaving and he ran away. I don’t do needles or IV’s for my own reasons. I would rather have the pills! The other neurologist listened and gave me pills. I got nothing. I suffered! I can’t wait to see and tell MS specialist! I am not going back to that neurologist! I will tell specialist all of this. Hopefully I can get something to help me! I hope you do too!
Hmm. Maybe Bettysmom will give us her prospective on this, from a medical standpoint. Prednisone seems to be the 'go to' drug in my backwoods corner of the world. They write an Rx for it in the ER & say, "Next!"
I nearly got a Px for some when I was last in A&E. But the Dr saw my notes, and what the neuro wrote 😕 I remember, during my hospital stay in 2021, I was put on IV methylprednisolone, and in a day or so after I was able to walk again! So, it's not a backwards corner you went to.
If it were just me, I would not do video appointments. The Neurologist can learn so much about your symtoms in person. Muscle strength, reflexes and so on.
Before I was diagnosed, I was being treated with prednisone which helped me tremendously but when I asked the doctor if I could stay on it he slapped a drug seeker lable on my chart and it still stands today 14 years later.
Due to that fact he took his time diagnosing me. Until I ended up in the hospital for a exacerbation. He put me IV solumedrol and took my complaints seriously.
I recently saw one of the other neuros in the team, and she saw that my R leg and foot wasn't moving properly. I don't know if she argued with the head neuro about what he put on my notes 😔It'd be absolutely hilarious if I were to be taken into hospital (fingers crossed it doesn't happen) and the doctors on there were to argue the toss with the head neuro! 🤣
I've just bought some from India, so it won't be long until it gets to mine. I've only done it because it's my 30th next month, and I don't want to rely on my husband/family to get me around on my wheelchair 🙏
As someone with osteoporosis, prednisone not drug of choice. Surprise - my neurologist said turmeric. With all drugs only "choice" prednisone
I have severe foot drop now exacerbated by our houston weather. Yesterday I almost didn't make it to my door. Also have some s1 nerve compression. Ms. Compression or both? Getting Emg.
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