u/healthjourney34

I have CIDP and was diagnosed about 5 years too late. My neurologist suggested IVIG and it’s been a wild ride. First, I was supposed to start in December…. But didn’t til late June. (Insurance). Finally got it covered only to find out it’s 7,000$ co pay…… and I’m supposed to do it every 3 weeks. Prayed on that and God helped me there, I got a grant for a year that pays for my infusions. Got set up to have infusions at home because I live in a weird area, so that even worked out. First IVIG loading dose was 5 days. I went into encephalitis meningitis or however you say it. It was awful and really scary but luckily it was the last day so a week in bed recovering then I was feeling like myself again. 2md IVIG comes up. Again, I feel like I’m forced into a flare and feel like I’m completely drained of all energy, care, joints hurt and can’t get out of the house for a good week. 3rd injection comes this last July….., sure enough after I feel like xrap and not like myself; but I remembered this is how I felt last time. Well this last time was a good 9 days before I got some energy back; and I tried to go to the gym and I couldn’t even squat the bar. I cried in the car because I’ve been training for 2.5 years and although battling CIDP, I’ve always said how exercise has been my lifesaver while I was figuring out my sickness; and mobility is life’s medicine. I’m just stressed. I still feel very weak and I’m going into my 4th infusion a week from today. I want to give this a real chance before I quit; but I don’t know how many more infusions I can feel like this. Add a husband and kids that need your attention; and that I’m a school bus driver and let me tell you…. The guilt is there. I’m not energetic, I’m kinda bummed out and just not feeling myself. Is this normal? Does it get worse before it gets better? Should I quit and ask for something else? Maybe a different medicine or SGIC? Sorry this was long I needed to vent. I’m not feeling good. I want to be able to manage my CIDP, but what is the risk if I don’t do IVIG treatments? That I could possibly have another attack, and lose more nerve function? I don’t know what to do.

The last 11 weeks I’ve been on Reta trying to lose some hormonal weight I gained after getting an iud out and being diagnosed with a chronic illness. I knew my body is resistant to medication so when 1mg then 2 mg then even 3 mg didnt work I thought I had to give it time. Well I’m 11 weeks in and 3rd week on 5mg and I’ve only lost 10-11 lbs. people are saying to add mots-c, go up in dose, get it from another source (I’ve been using petratide science for awhile now). What would you do? I’m struggling to move forward and I need to buy more, but don’t want to get it from petratide but also love their prices. What would you do in my position? I also want to note that I eat 1600 calories a day with 130g of protein and exercise 6 days a week strength, Pilates and running. Thank you for any advice!

Hello,
I’m a 36 f and I’m very active working in the gym 6 days a week and eating a Whole Foods anti inflammatory diet. (With a Coke Zero, and a couple pieces of candy every so often😅). I lost 100 lbs 2 years ago and the last year maintained until I got my iud out after 7 years of having it. My weight jumped on in one month to be up 35 lbs. I started Reta 6 weeks ago and I’ve been making sure my workouts are more intentional with strength training, and I’ve been eating good getting my 130g of protein in. I started at 1 mg Reta, after 2 weeks went up to 2mg, after 2 weeks went to 3, then this week I did 4 mg. I don’t know if it’s working. I haven’t lost any weight besides 4 lbs that I go up and down with the last two weeks. My goal weight is 140 and I’m 180. I tried to add cag the last two weeks and I don’t know if I didn’t take enough or what but it didn’t feel different. I’m going to stay moving forward but I’m just feeling bummed that maybe I’m resistant or something. I will add I have CIDP, and I was looking forward to the inflammation help more than anything else. I’ve seen others who are stacking tirz with Reta an cag but I don’t want to ruin my receptors but also feel like my body needs a higher dose. Should I stick with Reta and go up to 6 mg, or maybe try something else? I know these things take time and I’ll be patient and consistent! Thanks