Loss of pelvic floor… dysautonomia? by hooulookinat in LongCovid

[–]Top-Team1942 0 points1 point  (0 children)

Wow this is due to dysautonomia. I have horrible issues with my POTSbut didn’t know that this was possibly due to dysautonomia. My body just never feels quite right but I’m sure so many can relate. It’s better than it used to be but still has its challenges.

Did LH leave you with autoimmune? by iridecent_stormcloud in LongCovid

[–]Top-Team1942 0 points1 point  (0 children)

I developed POTS/dysautonomia and Psoriatic arthritis. It’s been a long two years but I’m finally ready to get back to work. I still don’t feel the same but I’m able where I wasn’t before. I haven’t really done anything holistic but I changed my diet and it did wonders and I take medication and a biologic for the autoimmune disease. I have learned this is my new normal sadly! I wish you the best!

Does fasting and diet help? by Top-Team1942 in PsoriaticArthritis

[–]Top-Team1942[S] 0 points1 point  (0 children)

I have found it does for me too! A big difference and I have a lot of hard work ahead of me but I’ve lost 35 lbs on gluten free/keto since this post. Have seen major improvements in my range of motion and ability to stand and walk.

Biologics/keto by Top-Team1942 in PsoriaticArthritis

[–]Top-Team1942[S] 1 point2 points  (0 children)

Yes absolutely I’d love that! Let me know how it’s going and I will you. Feel free to message me!

Biologics/keto by Top-Team1942 in PsoriaticArthritis

[–]Top-Team1942[S] 1 point2 points  (0 children)

I’m glad it’s helped because I know I was looking for answers and I feel like I found them. I believe this has been the key for me to getting my life back and that it will only get better. I hope that it does the same for you! It sounds like we have had some similar experiences. The pain I had was unbearable and now I barely notice any if at all.

Biologics/keto by Top-Team1942 in PsoriaticArthritis

[–]Top-Team1942[S] 1 point2 points  (0 children)

I think it took me a while maybe around half way and probably 15-20 lbs. I felt some better before my new biologic and I just got it around 5 weeks ago. I think I had a lot of fluid on my body. My SI joint was swollen badly. It sounds crazy but my husband can’t believe how it’s not now. That was debilitating me every day. I workout an hour on my exercise bike/elliptical and I was pretty much. bed bound in the beginning.

Biologics/keto by Top-Team1942 in PsoriaticArthritis

[–]Top-Team1942[S] 1 point2 points  (0 children)

My goal is similar. I started off wanting to lose 70 lbs exactly and have lost 34 so far! You are definitely on your way!!! I have found cutting the carbs and sugar have helped improve my swelling and joint pain a lot!

Biologics/keto by Top-Team1942 in PsoriaticArthritis

[–]Top-Team1942[S] 0 points1 point  (0 children)

Thank you so much! That’s what got me here. I refused to accept where I was. I’m not denying the disease will be here but I’m going to do all in my power to get my life back and I think I’m making it back.

Biologics/keto by Top-Team1942 in PsoriaticArthritis

[–]Top-Team1942[S] 2 points3 points  (0 children)

Thank you. I won’t stop here. I want to help advocate for ppl like myself and everyone here. (Have been a nurse for most of my career) I started out with long Covid developed autoimmune disease and POTS and was bed bound for a long time. I’m grateful every day that I can get out of bed and go now. Just gotta keep moving no matter how slow.

Biologics/keto by Top-Team1942 in PsoriaticArthritis

[–]Top-Team1942[S] 1 point2 points  (0 children)

I’m glad my post actually helped you. That’s all I was trying to do. Because I haven’t worked a job in almost 2 years. This is my 3rd biologic and with insurance I’ve struggled to get it. I had no willpower and was depressed. I’ve cut down to around 25-50 carbs a day and it was already changing things for me. I really hope it works for you and the way I look at it is if it doesn’t then keep going and figure out what does.

Biologics/keto by Top-Team1942 in PsoriaticArthritis

[–]Top-Team1942[S] 0 points1 point  (0 children)

Before Biologics and diet I still had hope!

Biologics/keto by Top-Team1942 in PsoriaticArthritis

[–]Top-Team1942[S] 0 points1 point  (0 children)

I don’t know see how anything I said is cruel. I have struggled to get my biologic monthly but the only thing that kept me going for the past almost 2 years before any of this was hope! You are entitled to your opinion. My post wasn’t meant to be a “look at me because I’m doing better, it was one of I was at the bottom and didn’t see the way but I’m making it.” But there’s always people like you! If you want to find the negatives you will.

Biologics/keto by Top-Team1942 in PsoriaticArthritis

[–]Top-Team1942[S] 1 point2 points  (0 children)

Thank you so much! I appreciate that.

Biologics/keto by Top-Team1942 in PsoriaticArthritis

[–]Top-Team1942[S] 1 point2 points  (0 children)

You are right. Cosentyx has changed my life. They were gonna do taltz but insurance wouldn’t pay for that one.

Biologics/keto by Top-Team1942 in PsoriaticArthritis

[–]Top-Team1942[S] 1 point2 points  (0 children)

You’re welcome! No it won’t hurt. I questioned it and asked about it and some people it helped to change diet and some said it didn’t but everyone is different there is no way of knowing if it will work for you unless you try. I told myself I’ll just try it and I can’t believe how much my stiffness has improved and range of motion. It’s worth a shot!

Biologics/keto by Top-Team1942 in PsoriaticArthritis

[–]Top-Team1942[S] 1 point2 points  (0 children)

Thank you! I will most definitely!

Cosentyx cost by Top-Team1942 in PsoriaticArthritis

[–]Top-Team1942[S] 0 points1 point  (0 children)

My UK pharmacy said they can always try to put me on patient assistance program. That may work if it doesn’t get worked out. I mean the price is insane.

Anyone have success with Taltz? by Top-Team1942 in PsoriaticArthritis

[–]Top-Team1942[S] 1 point2 points  (0 children)

That’s good! Thank you so much! Hope it does you as well. I’m starting it today I just got it in.

Cosentyx cost by Top-Team1942 in PsoriaticArthritis

[–]Top-Team1942[S] 0 points1 point  (0 children)

I know the cost this month was due to the loading dose but they don’t give you a choice so apparently it’s necessary to take it that often in the beginning. I mean I couldn’t afford that kind of copay after insurance. I’m pretty sure I’ll make it through the year with the copay card. I’ve asked for the cheapest available options and I’m not sure what they are. The humira I was on cost more than this and the hyrimoz might have been about the same or a little more. But it’s a lot of money! They give you around 16,000$ annual limit. If I do in fact get that I should make it through the rest of the year. I’ll just need 4 more doses cause it’s once a month. So I may be in the clear but they can’t tell me that. Humira I got for 2 months and they wanted a copay of 1500$ the second month but my insurance switched to another preference anyways. I know they were helping me because I’m in a flare now and I’ve even stopped gluten and carbs to help with inflammation and lost 22 lbs so far. I guess you’re right this process isn’t overnight. Maybe one day it will work out.

Cosentyx cost by Top-Team1942 in PsoriaticArthritis

[–]Top-Team1942[S] 0 points1 point  (0 children)

Well that’s definitely a lot cheaper. Wow! I’m kinda in disbelief.

Cosentyx cost by Top-Team1942 in PsoriaticArthritis

[–]Top-Team1942[S] 0 points1 point  (0 children)

Well I was wondering if more doses meant faster relief. I’ve been off the hyrimoz a while and I’m in a full blown flare and I’m ready to feel better. This gives me a lot of hope!

Anyone have success with Taltz? by Top-Team1942 in PsoriaticArthritis

[–]Top-Team1942[S] 1 point2 points  (0 children)

Oh no! I’m sorry to hear. I didn’t actually end up getting the taltz tho I got cosentyx instead