redrose54's Journal, 19 Apr 24

I was lucky that I didn't gain weight when they were giving me such high doses of the steroid treatments but rather lost weight and/or stayed the same weight on the steroid treatments but it did affect my moods significantly and my sleep patterns a lot. it also made me feel like I had a burning fire under my skin and that it was burning through me almost as if I had a flame inside me that was burning to get out. I've always been such an even-tempered person and to have such problems with mood swings and raise my voice at such a quick and an even level it was such a difference for me I was so happy when I finally hit was able to stop taking them. although I do have to say that I went into a bit of a depression afterward because it meant that I was permanently blind in my right eye. I don't know that if it causes you any mood changes but steroids really caused me a lot of problems sleeping as well I've always had no problems before taking all these medications falling asleep he was one of the things that I used to be able to enjoy I was just being able to lay down and go to sleep within 5 to 10 minutes with no problems but ever since I started taking all these medications and particularly when I was on steroids I would just lay there my thoughts would even race I would just lay there waiting nothing you would think eventually I would pass out but no. unfortunately I have very adverse reactions to a lot of medications and so things like sleeping meds have the opposite reaction I stay up like a crackhead shaking with headaches for days, things like Benadryl have a similar effect where most people get sleepy similarly they're like a caffeine pill to me I get anxious and hyper it's quite terrible which may be why I lost weight with steroids and had such an issue with my mood changes. I'm sorry that you're having such difficulty with the weight issue my husband also had difficulty with even just a short prescription with prednisone he was prescribed a 5-day dose temporarily and end up gaining almost 12 pounds and it really caused him a lot of stress. although that it really helped his numbness issue in his hands so personally I feel that it was worth the weight gain so that he would have more dexterity and acuity in his manual dexterity in his fingers. 

Leah, I am so sorry you had such bad issues with your medication course. I haven't slept well for years but have learned that is just the way it is and have accepted it (I'm now retired). I have such respect for you and how well you handle your MS diagnosis, my daughter was diagnosed this year and is just starting the process of medications and infusions so I am learning along the way. 

I'm actually really worried about my mom we just found out that she likely has MS too luckily it's only re-immittent MS so she'll probably likely go into remissions as long as we can get her on the right meds she's about to go for her first MRI soon with her doctor. We've been discussing her symptoms together and she has a lot of similar symptoms than to mine she also has rheumatoid arthritis as do I but I'm very disappointed by this development. She's dealing with the brain fog the aftermath of Long haul covid and we've been working with her diet since she's got the gastric sleeve and she's been doing so well I hate that she's having to go through this on top of it. I keep telling her that she is not at fault for me having MS she keeps blaming herself for it and I really hate that she can put any onus on herself for such a thing. Like she could do anything about genetics or whatever causes Ms in the first place it's so silly what we blame ourselves for sometimes as parents.. 

One good thing is though she does not seem to have the same medical issues with medication that I do she has different ones. The opposite reaction issues come from my dad's side of the family. From her side of the family we get other issues those issues typically are that we don't seem accept medication the same way how do I explain it we have to take more medication for it to be effective. So if a normal person takes 500 mg of Tylenol for example and their headache goes away we would have to take 1000mg to 1500 mg of the same Tylenol for it to be effective if that makes sense. Which is why prior to getting sick I didn't really take any medications because I figured if I ever got sick I needed to have no tolerance for anything so that the doctors could give me whatever I needed. So that's her issues so when they prescribe her muscle relaxers for her rheumatoid arthritis they have to prescribe and medicines for her other stuff they have to prescribe her pretty heavy doses of stuff. And her sleeping medication she's on three different types of medications to get her to sleep..