Wish me luck RDP fam!

[Reddy Too]

Never discount the healing effects or Red Cabbage salad

 

[Socalx09]

I posted back a few pages.
I was on prednisone for about 18 months for heart disease.
It's a great medicine and the benefits out weigh the side effects.
But damn it's tough to ween off. Ups and downs. All I can say is patience.
As much as you think you can stop cold turkey, you can't. Your body will let you know you can't!

Glad to see and read your getting better. We love updates around here.
Just read the speed utv thread. Lol

So good to hear. You and your journey have been amazing. One of the earlier beneficiaries of Prednisone was Jerry Lewis. The med was successful, but he also experienced the added weight, as a much older guy. And then was able to take it off. You’ve got this! Have a Very Merry Christmas. Please keep us updated. Always look forward to your posts.

Prednisone is definitely a great drug with how many diseases it can treat and quickly it can help. Yep, once I got down to 50 mg, I started noticing micro blisters on my face and back. As soon as I went back up to 60mg, they disappeared. So now I’m going to drop down even slower to get my body use to it and hope once I get down to 50mg again, there will be no flare up. When I was over 100mg, I definitely had some rage in me. I would snap pretty quickly on anyone and it normally takes a lot to get me upset.

Thank you both for your words and advice with prednisone. It definitely helps!

Merry Christmas!

 

[Socalx09]

Well it’s that time again for infusions.

Unfortunately, I have had some setbacks. The tapering of prednisone is not going well. I am unable to drop below 60mg without a flare up. My face and scalp keep getting blisters when I drop below that. The prednisone is starting to have some bad side effects for me. I have teeth sensitivity with hot and cold. My fatigue is pretty bad with the muscle weakness. I have night sweats, and insomnia. Just the cons of long term high dose steroid use. I see my doctor on Wednesday. Hopefully there’s some adjustments they can do so I can keep tapering down on the prednisone. I have changed my diet to a low carb/low sugar. I have felt better since I changed that.

Besides that- I’m trying to stay positive and making sure I continue to do things that make me happy. Going out riding this weekend in the RZR. Usually if I do something “big” on a day, I plan to rest the next day or two. Just some adjustments to life. My wedding is only 4 months away now so getting excited!

We were planning on going to Cabo, but I can’t travel right now with all this going on. Thinking we are are going to do a Havasu honeymoon so looking forward to multiple days of boating. My favorite thing to do! Weather should be good since I’m still not sure how much heat will effect me yet. We will just go the first few days alone, and then invite whoever else wants to join us and continue the party at the lake!

 

[wallnutz]

Don't sweat the small set backs, that prednisone is something you don't want to be on long. Always hoping for the best for you.

 

[monkeyswrench]

The honeymoon is for the pictures and the wow factor. What really counts down the road, who was there with you.

With your treatments, there may be hiccups now and again, but there seems to still be progress. It's good to hear you're able to get out and about again. That on it's own is a good "treatment"

 

[Socalx09]

Don't sweat the small set backs, that prednisone is something you don't want to be on long. Always hoping for the best for you.

Thank you! I appreciate it. Yeah 6+ months of prednisone is not fun! Hoping I can get under 40mg soon to limit the side effects.

 

[Socalx09]

The honeymoon is for the pictures and the wow factor. What really counts down the road, who was there with you.

With your treatments, there may be hiccups now and again, but there seems to still be progress. It's good to hear you're able to get out and about again. That on it's own is a good "treatment"

Always find your posts heartwarming! I am finding that out recently. I definitely got lucky with my fiancé for sure. I have no worry that he will be there for me after all the things he has had to deal with my health. A havasu honeymoon will probably be more up our alley anyways!

Definitely major progress which I’m grateful for. I am very fortunate to have good aggressive doctors around me. We all are puzzled between the IVIG and rituxan treatments that I’m not able to taper off the prednisone more then I am. We were all hoping I would be able to be almost steroid free with the infusions. Already knew I had a severe form on the disease, but it is definitely stubborn.

I learned the hard way that staying in and not going out just put me in a funk. I almost didn’t go to Glamis for New Years because of the flare up, but decided I could at least hang around at night and enjoy peoples company even if I didn’t go in the RZR. Went on a few rides and enjoyed being around people I cared and loved. It heals a lot laughing around a campfire with loved ones.

 

[rivrrts429]

I developed a bad food allergy to Olives and Olive Oil in my late 20’s, weird I know. It’s amazing how many foods have olive oil in them.

Anyways, they prescribed me Prednisone to counter the reactions. That shit is no joke and not to be fucked with over a long period of time.

I’ve decided to deal with the reaction itself than take the Prednisone.

Keep the positivity. More people than you realize are supporting you in one way or another. We can’t wait to hear all about your wedding, congrats!

 

[Socalx09]

Wow- I can’t imagine how many foods you have to avoid with an olive oil allergy. Can you use an Epipen for that allergy?

It’s definitely not to be messed with over an extended period of time. I’m pretty sure I’ll be doing bone density scans, dental work ups and vision tests since I’m over the 6+month now. It is just a necessary evil right now.

Thank you! Really appreciate the kind words!

 

[Ducksquasher]

Hang in there...as you have been. You have no idea how inspiring you are! I am sorry that you are having to go through this.

 

[Socalx09]

Well I had a major setback with a different issue.

I didn’t feel the greatest all last week. But, my grandma also wasn’t great and ended up at the hospital twice for a UTI and then fell hard on her head a day after being discharged.

I put my pain aside and dealt with her. My fiancé was leaving on his bachelors trip to Glamis Thursday morning and I just thought I could keep sleeping the pain off. Friday afternoon- I called my mom that I needed her to stay the night because I don’t feel ok. I wasn’t much better Friday evening, but she couldn’t convince me to go to the ER. She left in the AM to get the dog meds she forgot. Well in those two hours, my abdominal pain got a lot worse and I collapsed on the floor. I had my phone on me and called 911. The ambulance came and I kept thinking I was being dramatic and something better be really wrong. Well turns out, it was sepsis and diverticulitis. I don’t remember much from the ER. I didn’t think it was as bad as these notes sounded. Heck I even told my fiancé to stay in Glamis and I was fine.

It was my first episode so they do not think I need surgery unless the inflammation does not go away. I have to have a colonoscopy soon and am on a clear liquid diet. Now- I can’t get IVIG treatment next week because of this infection. So, I’m worried I could flare up my pemphigus vulgaris disease. I hope they only push it out a week. They believe this episode happened because of the long term use of high dose steroids are leaving me vulnerable to infections so they are going to try to figure out a better plan to get me off the steroids. Thankfully, I got to watch the playoff football games from my room Sunday.

I was discharged tonight and so was my grandmother. I am trying to not do too much, and making sure she stays in bed because I am not great. Still in some pain and hoping it starts going away soon. This is definitely a journey and I hope it starts going in the right direction again. I am very tired of the daily toll it’s taking.

I just want to go off-roading, make it to my wedding and enjoy boating season! It’s definitely been a rough year. RDP threads have kept me entertained all weekend though.

 

[monkeyswrench]

I don't know if the pain is the same, but a week after a botched gallbladder surgery I had what they said was some form of sepsis...bile in abdominal cavity. That hurt more than anything I've ever felt! If it was anything like that, my God I'm sorry you had to go through it. I hope they get the infection squared away quickly. No infection, no need for pain meds.

Don't be afraid to ask for help, and don't ever try to gut the pain.

 

[76sanger]

Please never try to outdo the pain! We have pain for a reason. Can your mother take care of your grandma? Sounds like your stressing a lot because of her now. I get it, but you need to put all your focus on you to help you heal first. Then you can take and help grandma when your healthy again....soon!!!

 

[Socalx09]

I was well enough to enjoy my bachelorette night! I haven’t drank in a while so after two drinks, I was pretty buzzed. The girls threw me a dinner at A’s in crystal cove. It was a nice dinner. The DJ turns up the music later in the evening and it turns into more of a lounge scene. We didn’t have to fight for elbow room or deal with the younger 20 something crowd. It was perfect since I was able to sit if I wanted to when I got tired and still talk to everyone in the group. Everyone wore wigs since my hair isn’t fully back yet.

I’m doing my last IVIG infusion before the wedding right now. I have IVIG the week after the wedding. So I got lucky that it wasn’t the week of. They are going to start experimenting with high dose IVIG and other medications after the wedding to see if I can get off the steriods. Unfortunately, they can’t seem to get my disease in remission and I keep flaring on week 3 after IVIG. I have had multiple infections, balance issues, visions issues, etc these past months. Everything taste metallic too. My body just can’t deal with the high dose prednisone much longer.

 

[RVR SWPR]

For sure you have friends.

 

[MPHSystems]

Looks epic!

 

[Socalx09]

Haven’t updated this thread in a while. I just realized it has been just over a year since I was diagnosed. Next month will mark a year of infusion treatments. I have gained over 40lbs in a year between medications, infusions and honestly- some days I’m just not moving at all. I am finally down to 10mg of prednisone. It has been a battle tapering it. My joints hurt badly and I have no energy some days. In the last few weeks I have developed a hip issue. The long term steroid’s side effects really do a number on your body. But, hopefully in the next few months I will be off prednisone completely.

Now for the positive news!
My doctors have been optimistic since I haven’t majorly flared. If I do get blisters, it’s gone within days. I met with a high risk obgyn a few weeks ago to start (hopefully) planning for a baby. One of the infusions I do, they do not recommend trying for a baby for at least a year after your last infusion. And, she also wants me in remission for 6 months after that. So, there is an 18 month plan before I can think about having a baby. Which hopefully gives my body sometime to heal since I can’t imagine chasing after a baby right now. But, that is positive news because I thought I would be told no. They will hope IVIG infusions will keep the disease from flaring.

I got married in late April. It has been a long year battling, but I’m so grateful from where I was a year ago. Can’t thank all of you enough for the support and love on this thread and private messages!

I doubt anyone wants to see these videos, but RDP did get us together so for those that want to see- here are the wedding day mini video and videos.

(I did not have amazing hair growth on my wedding day, it’s a wig haha)

I was going to post the long version of the wedding, but realized it got a little wild at the reception and not sure my family/friends would want some of the footage on the internet.

Before

 

[monkeyswrench]

Keep it up! Making gains, big or small, is still moving forward. Some days may be harder than others, but the good days make it all worthwhile.

 

[coolchange]

Was wondering the other day how you were doing. Glad to see a positive change for you.

 

[riverroyal]

Great update.
Thanks for sharing

 

[FreeBird236]

Glad you're doing better, congrats on the marriage and continued improvement.

 

[DaytonaBabe]

Loved your wedding video and pictures! Congratulations! Wishing y'all a lifetime of happiness and health

 

[Socalx09]

Loved your wedding video and pictures! Congratulations! Wishing y'all a lifetime of happiness and health

Thank you! I keep thinking now we could have upgraded the boat or RV instead, but it was a great time to celebrate after the year we went through.

 

[DaytonaBabe]

Thank you! I keep thinking now we could have upgraded the boat or RV instead, but it was a great time to celebrate after the year we went through.

Ah, I hear ya on the wedding expenses, but it's totally worth it to have those amazing memories to look back on every year. Plus, you looked GORGEOUS!

 

[Xstream]

I think about you from time to time I am glad life is getting better good luck on your new start.

 

[FCT]

Congratulations! Glad things are looking up and you’re doing better

 

[Socalx09]

Thank you all! It’s such a relief to feel well enough to enjoy boating this summer!

 

[Socalx09]

I know a few people posted and messaged me about IVIG treatments. Kaiser switched to a new brand that is more concentrated- less time. But, after day 3- I have a 48 hour migraine from hell. I can’t eat, drink water or move my head. I have extreme nausea, vomiting, laying down or sitting up, lights on/off - it doesn’t matter. Robert had to take a day off in January because I ended up collapsing by Friday early morning. I told my doctor I want to drill a hole in my head to relieve the pressure.

Anyways- anyone else or their family members having these issues? The infusion nurses have said there are more reports of headaches. I almost want to tell them that I’m allergic to it just for the hope the pharmacy will order me the older brand of it. But, I don’t think they will do that.. They have added more hydration fluids, I take pre meds all week with Excedrin. Nothing seems to help until 48 hours passes. I go from wanting to crawl into a hole to immediately better. I’m on month 4 of the new IVIG meds and I am not looking forward to going in a few weeks. I guess it’s just one of the side effects to staying flare free right now.

 

[Willie B]

I know a few people posted and messaged me about IVIG treatments. Kaiser switched to a new brand that is more concentrated- less time. But, after day 3- I have a 48 hour migraine from hell. I can’t eat, drink water or move my head. I have extreme nausea, vomiting, laying down or sitting up, lights on/off - it doesn’t matter. Robert had to take a day off in January because I ended up collapsing by Friday early morning. I told my doctor I want to drill a hole in my head to relieve the pressure.

Anyways- anyone else or their family members having these issues? The infusion nurses have said there are more reports of headaches. I almost want to tell them that I’m allergic to it just for the hope the pharmacy will order me the older brand of it. But, I don’t think they will do that.. They have added more hydration fluids, I take pre meds all week with Excedrin. Nothing seems to help until 48 hours passes. I go from wanting to crawl into a hole to immediately better. I’m on month 4 of the new IVIG meds and I am not looking forward to going in a few weeks. I guess it’s just one of the side effects to staying flare free right now.

… Oh Damn girl…I feel horrible for you… I live in pain every day… And, I’ve watched my old girlfriend, my dear friend go through 3 brain surgeries… you hang in there, young lady… You can get through it

 

[Socalx09]

Well…I had my week of infusions. I didn’t make it to day 3 because I woke up with the migraine again. It usually doesn’t start until after my last treatment. It started early on Tuesday and I couldn’t move my head without vomiting. Just the weight of my head makes me sick and the pressure in my eyes. There is nothing I can do to get relief from it. I keep thinking that this cannot just be a normal side effect. They rescheduled my missed infusion until the middle of august. I finally said this is beyond a “headache” and a migraine. I’m 36 hours in and just now can eat crackers and drink water. I still feel very off today and emailed my doctor that I think I’m experiencing drug induced meningitis. This can happen with IVIG especially with the new brand they changed to since it’s more concentrated. It usually resolves itself within a few days.

I’ve read that some people get pre medicated with a shot of steroids before treatment to reduce this. Hopefully my doctors figure out something because I am not even walking on the first day of the migraine-I’m crawling to the bathroom.

We are trying to plan for a baby, but I have to be off Rituxan for 6 months with no flares. As far as tapering off IVIG, it may not be an option as if I do get pregnant, a flare up is common in the first or second trimester so they usually keep you on it during pregnancy. Or, we might have to come to the realization that adoption/fostering may be it.

 

[BHC Vic]

I’ll be praying for you. I don’t know you personally but from what I read and see I know you would both be amazing parents. Don’t give up

 

[BabyRay]

Well…I had my week of infusions. I didn’t make it to day 3 because I woke up with the migraine again. It usually doesn’t start until after my last treatment. It started early on Tuesday and I couldn’t move my head without vomiting. Just the weight of my head makes me sick and the pressure in my eyes. There is nothing I can do to get relief from it. I keep thinking that this cannot just be a normal side effect. They rescheduled my missed infusion until the middle of august. I finally said this is beyond a “headache” and a migraine. I’m 36 hours in and just now can eat crackers and drink water. I still feel very off today and emailed my doctor that I think I’m experiencing drug induced meningitis. This can happen with IVIG especially with the new brand they changed to since it’s more concentrated. It usually resolves itself within a few days.

I’ve read that some people get pre medicated with a shot of steroids before treatment to reduce this. Hopefully my doctors figure out something because I am not even walking on the first day of the migraine-I’m crawling to the bathroom.

We are trying to plan for a baby, but I have to be off Rituxan for 6 months with no flares. As far as tapering off IVIG, it may not be an option as if I do get pregnant, a flare up is common in the first or second trimester so they usually keep you on it during pregnancy. Or, we might have to come to the realization that adoption/fostering may be it.

I’m sorry you’re going through this, and will pray for you. If you do end up adopting or fostering, I’m sure you’ll love the child no differently than one conceived on your own.

 

[Socalx09]

I’ll be praying for you. I don’t know you personally but from what I read and see I know you would both be amazing parents. Don’t give up

I’m sorry you’re going through this, and will pray for you. If you do end up adopting or fostering, I’m sure you’ll love the child no differently than one conceived on your own.

Thank you both. It truly means a lot. Things happen for a reason so just trying to figure out what this reason is. I’m sure it will all work out like its suppose to.

I can’t wait to have a little one on all our adventures.

 

[gqchris]

Thank you both. It truly means a lot. Things happen for a reason so just trying to figure out what this reason is. I’m sure it will all work out like its suppose to.

I can’t wait to have a little one on all our adventures.

Keeping you as always in thoughts!

If you want to know how a baby changes things, let me know! Mines almost 3, I am 50 = One Heck of a Wild Ride!

Also, I am adopted, and my parents are amazing. Never ever have I felt different then anyone else. So dont take it off the table, its a great option!

 

[Socalx09]

Keeping you as always in thoughts!

If you want to know how a baby changes things, let me know! Mines almost 3, I am 50 = One Heck of a Wild Ride!

Also, I am adopted, and my parents are amazing. Never ever have I felt different than anyone else. So dont take it off the table, it’s a great option!

Haha everyone with kids keeps saying do I really want to bring chaos into my life. I’m probably naive thinking I already know what’s it’s like to drop everything to take care of people, but I’m sure it’s a whole different ballgame with a little one. There’s no time off.

I’m so glad to hear that! That is wonderful.
I definitely feel that way. Despite some of the risks of fostering to adopt, I would do it. I’m just hoping we won’t have to take out a loan to have a baby. I looked up surrogates as well, but that is north of 100k. Robert was like we could have a nice sand car! we will find a way!

 

[Tio Pancho]

Wishing you all the best for your health and future family.

 

[musicFunsun]

Sending good thoughts & prayers.

 

[HNL2LHC]

Best to and hopes that you are feeling 100% SOON!!!

 

[Deckin Around]

Thank you both. It truly means a lot. Things happen for a reason so just trying to figure out what this reason is. I’m sure it will all work out like its suppose to.

I can’t wait to have a little one on all our adventures.

Great attitude I totally agree. I hope for nothing but the best for you and Robert.

 

[Willie B]

… I feel so bad for your pain… and sick feelings… But I also understand the two of you wanting to have a child… I’m an old hippie never got married….Never had any kids… A lot from my era just lived with our significant others… Ergo, many no children…

… Luckily, for me, my next-door neighbor landed on me when she was nine… She is the daughter I never had… She is now 29… She had her first child 3 1/2 weeks ago… The most beautiful experience for her… And for me… I am now “grandpa”…

… With your on and off health…There is absolutely nothing wrong with adopting… It certainly might be physically and emotionally less taxing on you and your husband…

… You and your hubby are smart people… I am sure you will be able to process the entirety of your situation…

 

[DaytonaBabe]

Hang in there, girl! So sorry you're having a rough time right now. Praying for your strength and that you are feeling better again soon.

 

[monkeyswrench]

Sorry to read this round knocked you pretty hard. When my Mom was having chemo, there was some prescription she ended up getting...three days before, 3 pills, 2 pills and one pill. Maybe the opposite order? It sounds a lot like the same type of deal. Without it, the evening of treatment was brutal, horrible to watch a family member go through. With the "preload", there was still effects, but much muted.

Kids Well now, think of it this way, you'll have a lot more knowledge going in, having already been a caregiver type, and fighting your own battles. It won't matter if your child is adopted by you, or birthed by you, your child will be yours....with a buttload of adopted uncles and aunts anyway

You probably understand more than most here when I say this: Kids will be the hardest job you'll volunteer for. There are no days off. There is no work schedule...and there is no playback to go by. On the other hand, your entire view of the world changes. Your first car, home...not anything in comparison to the first time you find yourself doing something solely for your kid. Small events can be major accomplishments, and that doesn't matter the age of you or the kid.

Without kids, I believe some life events can change your view on life. I'm a big believer in "all things happen for a reason"
A person's epiphany may not stem from parenthood. Life's road is full of twists and turns. Try not to stress about the time or the turns, just make sure to enjoy the ride.

 

[gqchris]

Haha everyone with kids keeps saying do I really want to bring chaos into my life. I’m probably naive thinking I already know what’s it’s like to drop everything to take care of people, but I’m sure it’s a whole different ballgame with a little one. There’s no time off.

I’m so glad to hear that! That is wonderful.
I definitely feel that way. Despite some of the risks of fostering to adopt, I would do it. I’m just hoping we won’t have to take out a loan to have a baby. I looked up surrogates as well, but that is north of 100k. Robert was like we could have a nice sand car! we will find a way!

You already know where I am going with this. Hehe. I live vicariously thru your trips on here now and soooooo miss those days.! Even when things would break down hahaha

It is 100% the most difficult thing I have been thru in my life, but also the most rewarding. Every minute you can sneak away you try to just catch your breath.

Right now my main problem in life is trying to convince her to eat food. She exists on yogurt and apple sauce. I have no idea how! Dr. Says is normal. WTF. Just started out of the blue. Kids are weird!

 

[FreeBird236]

Prayers that you get some relief and that all your dreams come true.

 

[Socalx09]

Thanks everyone so much I’ll respond more later.

Just wanted to do a quick update as every time I try to start reading, my head throbs. I was able to eat noodles and broth yesterday so I’m happy about that. I’m just resting today, but at least it’s mild now.

My doctor said for me to skip the third treatment that they rescheduled. She is going to see me on the 14th to go over options as she looks into it more.

 

[Socalx09]

I saw my doctor yesterday. It is recommended that my infusions stop. It is not safe to continue and I will be on Imuran to hopefully stay flare free. I still am battling a stiff neck and a manageable migraine daily. I am being referred to a neurologist.

I am back on prednisone for 20 days and then I will taper down off of it. I wasn’t thrilled about that because I was on a very high dose of prednisone for way too long. But, this is short term and I know how that drug is a double edged sword.

We will see what happens next, I’m sure my doctors will get me right.

 

[Willie B]

I saw my doctor yesterday. It is recommended that my infusions stop. It is not safe to continue and I will be on Imuran to hopefully stay flare free. I still am battling a stiff neck and a manageable migraine daily. I am being referred to a neurologist.

I am back on prednisone for 20 days and then I will taper down off of it. I wasn’t thrilled about that because I was on a very high dose of prednisone for way too long. But, this is short term and I know how that drug is a double edged sword.

We will see what happens next, I’m sure my doctors will get me right.

…Man… I feel so bad for you… I know what it’s like going through this stuff… Something as simple as giving a urine sample today… Was extremely difficult for me… That is tiny, tiny compared to what you are going through… Hang in there, baby girl

 

[monkeyswrench]

I saw my doctor yesterday. It is recommended that my infusions stop. It is not safe to continue and I will be on Imuran to hopefully stay flare free. I still am battling a stiff neck and a manageable migraine daily. I am being referred to a neurologist.

I am back on prednisone for 20 days and then I will taper down off of it. I wasn’t thrilled about that because I was on a very high dose of prednisone for way too long. But, this is short term and I know how that drug is a double edged sword.

We will see what happens next, I’m sure my doctors will get me right.

The song may change, but the dance is the same. The doctors will find the right song, but it takes time. Just be sure to tell them every symptom change, even if you don't see it as anything. Neurologists are kind of trippy doctors. I see them as being the ones that work on the software, or wiring of our bodies. Everything physical, and some mental, of what we feel, is in their realm. It's no mystery pain can cause depression or anxiety, but they can also cause physical pain and discomfort. Sometimes tying it all together and problems solved, takes not just the right doctor, but the right doctors.

Keep it up, you're miles ahead of where you were, and still headed the right way