Printable View
I just wanted you to see that the pred uglies that we all hate so very very much, always go away.
The first time was shocking.
I never thought they would go away.
Couldn't imagine that I would see my old self again.
I did.
The second time, I decided to document the process.
Here it is.
Attachment 2625
Always love yourself, and never ever listen to those voices in your head that are triggered by looking in the mirror.
You will be you again. This I promise.
Awesome ❤
Y o u
a r e
b e a u t i f u l , marta, no matter what.
Thanks for sharing.
I really wish I could get off it but with my adreanal glands not working theres not much of a chance. But my skin has thinned out sooooo much that if I slightly bump something I get those red marks. Right now I looked like I was on the losing side of a fight !!!! One thing I noticed about your pics, you are always smiling. Wish I had your outlook. Take care up there my friend...its about your time of year...skiing and cross-country.Have fun :)
Oh Debbie, that so sucks. But I have to say that none of our adrenal glands work while we're on pred. That's the problem with this stupid drug (that is awesome when we need some pain management and inflammation control). After a couple of weeks of use, our adrenals stop. That's why the wean is the worst between 10mg and 5mg. I'm sure you know this so I don't want to come across as patronizing (something I'm very good at = accidentally sounding patronizing) so I'll stop, but if you want to talk about it, I have some techniques to wean. I am happy to share. Just say the word.Quote:
Originally Posted by Debbie C
I know what you mean about the red spots. My dad gets those. I'm on blood thinners now (as is he) but I never get those spots, whereas if he touches anything with his skin, it instantly looks like a massive blood blister - without the blister - under his skin. I always thought it was the blood thinners, but it might very well be pred, as he's been on it on and off for his Lupus. Interesting observation.
I am always smiling because the alternative isn't that appealing. Ha ha. You can see in the 'O' from LOVE (I wanted to sign the message,) I'm not so smiley. I was so so so very bummed that day. I had just started the pred to alleviate some symptoms, and I think on that day we got a for sure that I was flaring. I thought I was done with this, but alas, reality hit hard that day. Also, isn't a smile on pred absolutely hilarious? Same size mouth, but in the sea of cheek flesh, it sure has a different appearance. Another lesson in perspective. Ha ha.
I'm so stoked to ski again. We still have another month and a half until ski season, but I've been riding my bike like it's going out of style.
Brian got me an electric assist mountain bike for Christmas (it came in mid January 2017) and I've managed to put on 2,800km since then. It helps, but I've been outside on my saddle, paddling my bike for that many kilometres (mostly with my honey.) I don't have words for how awesome and liberating it has been. I would recommend it to anyone who use to bike before getting sick. I feel alive this year because of that bicycle. I'm beating some people's records here (because it's super fun to go fast with it using the assist) and they're getting mad, but I feel like when they lose a significant portion of operational lungs, then they can bitch at me. In the meantime, I'm going to have as much fun as I possibly can because as we all know, who knows what tomorrow brings.
Big hugs Deb.
Stay strong, live long and prosper.
Thanks Alysia,Quote:
Originally Posted by Alysia
YOU are beautiful.
We all are beautiful.
We just forget sometimes when we look at that massive person looking back at us in the mirror and that's why I wanted to post this.
It's hard to see the true Self through a layer of pred flesh sometimes, but it's always there.
It's hard to see the soul through eyes that have been pushed shut together by pred cheeks, but that sparkle always lives.
I told my doc I was taking pictures when I first got on the pred last year. I told her I wanted to document the process because the first time was so shocking I refused to acknowledge the mirror and refused to have pictures taken of me. Now I knew the outcome and wanted to give others hope where sometimes it feels like a non-existent entity. She thought I was nuts to take photos of it. I think she might be right, but that's never stopped me before. Ha ha ha. Nuts is my middle name.
Lots of love to you my friend.
Thank you Marta
Nuts may be your middle name, but gorgeous is your first name.
You always know the right words to say, at the right times.
I also try not to have photo's taken of me......... until recently.
I also decided not to colour my hair anymore. It's time to embrace me, the real me. greying hair, fine lines, and all.
I'm in my 50's now and I have earned these trophies.
In 2010 they gave me 3 to 5 years, we know that's all bull and that if the treatment is correct, we can go a lot longer.
I said that I wanted to get to 50, well I have done that plus more, which is why I have now decided to embrace me.
Maybe Nuts is my middle name too
Love you long time
I embrace you too, Michelle, marta and debra ❤
(is it a girl's thread ? )
marta, I will be grateful to read about your techniques of weaning pred. I am stuck on 5mg many years now (at times it goes up to 30-10mg).
It is not that I am that brave to wean the pred, but now I am also on another steroid, budezon 6mg for my microscopic colitis, and will prob be on it for life, so maybe I can wean the pred a bit. Maybe. A bit.
Thank you for this beautiful thread.
I think we can all call ourselves 'Nuts' - the really good nuts, the expensive ones, the rare ones.Quote:
Originally Posted by mishb
I've thought about letting my hair go natural, aka grey, but it's too long so I'd have to shave it and start from scratch. Not sure I'm ready to go there yet. Ha ha.
I too am in my 50's now, so every birthday is a blessing. I shudder when I hear people complain about wrinkles. I am so grateful that I get to see my wrinkles because it means I'm getting older - something that was iffy in 2010, just like you.
As for saying the right words at the right time, I'm glad you think so, because I went to bed last night and was questioning myself about my comments... "do I say too much" (yes) "do I come across as a know-it-all?" (yes) "do I come across as condescending?" (I hope not, but probably), and on and on it goes. So thank you for that.
Stay strong (as always) and enjoy the ride, the wrinkles and the grey hair.
Lots o'love back at ya!
Pred wean.Quote:
Originally Posted by Alysia
The grossest part of getting back to normal.
I dread going on pred not only because of the lack of sleep, and how it makes you look but also because of the wean.
A little context: As you probably know, our adrenal glands normally make between 9 and 11mg of corticosteroids per day. Once we start a pred regime, the adrenal glands are like "well we don't have to work any more, let's take a vacation" so they shut down. Once they shut down they start to atrophy. The wean is important because if you go too fast, you can trigger a flare, or you could go into adrenal crisis, and that's a life threat. What we're doing is not only waking up the adrenals so they can produce but also pulling them out of a state of atrophy. A significant task to say the least.
So this is my take on it.
We wean in big jumps (5mg) per week or couple of weeks until you get down to 20mg.
Then from 20mg down I was dropping about 2.5mg per week or couple of weeks, early on I even went a month sometimes between drops. I always play it by ear and don't put any concrete dates into plan judging the wean based on how I feel and if I drop and feel super gross, I go back up to the previous dosage until I feel good, then drop a smaller amount and see how that works. Sometimes I've done that a few times.
Once I get to about 12mg, I start to drop 1mg at a time every 2-3 weeks. That way I minimize the pain. It always hurts. I have figured out the nuances between WG symptoms, pred wean symptoms, and cold/flu symptoms. They're very similar but each has a different underlying flavour. I think the only way to figure that out is with experience. Here I also do the back and forth if needed.
Below 8mg I found to be the worst. Between 8mg and 5mg in my experience sucked the most. I think that's because now you're operating below what your body needs (9mg minimum-ish) but your adrenals aren't working yet. It's that deficit that starts to wake them up, and it's a yuck fest. I found by about 5mg, it starts to even out. Below 8mg, I do 1/2 mg drop, and I don't cut my pills, I just alternate dosages to average out 0.5mg drop. So one day I'll do 8mg and the next day 7mg. Go like that for a while until you feel good physically, then you can even do one day 8mg, and two days at 7mg, and then keep increasing the 7mg days in a row and decreasing the 8mg days. Eventually you'll find yourself at 7mg. And again, I would do this at your own pace to try and make it as painless as humanly possible.
You're at 5mg and want to drop, try taking 4mg one day a week. Then take 4mg two days a week and work your way down. If you've been on it for this long, don't beat yourself up for taking a long time. Take your time. Your body is obviously producing it's own corticosteroids if you're at 5mg, or maybe it just needs to be pushed just a little more to get those bad boys running.
You can give yourself a half a year or more if you like to get off it, and just slow and steady... just keep tricking it by decreasing the dose ever so slightly from once a week, to twice a week, to three and eventually you'll be at 4mg. Be gentle with yourself. Both physically and psychologically. We tend to be our own worst critics sometimes, so by loving yourself and knowing that what is meant to be will be, eliminates that need for control and the associated stress that comes with wanting to control uncontrollable situations.
I hope this helps.
I send you lots of love and strength and healing jujus.
Peace.
P.S. This summer we had lots of smoke from wildfires in British Columbia and Washington State, and I found that the smoke was triggering my symptoms. I put myself on 10mg of pred for 4 days (twice this summer) and upped my Imuran by 50mg. I didn't consult with my docs, but it helped, and since it was only four days at a stretch, I could just stop it and carry on. Just food for thought.
Thanks, Marta!! This looks like a good way to get off pred. I'be been at 5 mg for most of three years and want to try to get off again.
I hope it works for you Pete.Quote:
Originally Posted by Pete
The first go around it took me several years to get off the pred completely. This time around it was less than a year using this technique. Like I said though, there is a level of grossness there, but it really does have a distinct 'predness' to it. It's hard to describe, but I always know it's pred wean symptoms when there is a deep, dull pressure in my ears, throat and Eustachian tubes. Everything else aches, but the ear pressure thing always gives me some comfort that it's the wean and not the WG dog coming back.
I don't know if that makes any sense. Regardless, I hope it works. And if you've already resigned to being on pred indefinitely, taking your time is no big whoop. So take your time.
Go slow and trick it into submission, ha ha.
I was keeping track on this go around and I'll attach the graphs from my wean (I know, I'm a total geek.)
Attachment 2627 Attachment 2626
The graph size changes based on relativity, so the second (2017) looks like I'm taking more when in fact it starts at 2mg and goes to 0mg and the first (2016) starts at 20mg up to 50mg (with a couple of 100mg during RTX) and works down to 2mg. Super geek. ;)
Thanks, Marta!!
I'm seeing Dr Villa Forte next Friday (and getting a dose of rtx). I plan to discuss a slooooow taper with her. Probably drop 0.5 mg/month or six weeks. Since my adrenals are making some cortisol, I'm really hoping they'll revive to full capacity.
Oh Pete, that's so awesome.
RTX is always a turning point for the better for me.
I hope it is for you as well.
I'm sure that they'll come back and be very happy little adrenals to be working again.
The intrinsic intelligence of our body is amazing, we just gotta have faith in it.
It has hiccups sometimes, but overall it's an amazing machine, after all, it was designed to carry around some amazing souls.
All the very very best with the RTX and if I can help in any way with the taper, let me know.
Peace, love and serious power.
I've been getting an annual dose of rtx since 2013. It has done very well at maintaining remission. I've had no side effects from it. However, the combination of solumedrol and Benadryl puts me a bit out of sorts for a day or two. Getting a little exercise helps with that.
Thanks for the good thoughts about the pred taper. I hope I'm off it by this time next year. Maybe that will help me lose the last of the pred pounds...
That's so good. No negative side effects from a treatment is the pinnacle of the pyramid for us.
Just a couple of days ago, I got under a milestone weight that I haven't seen since before the flare last year. It's so awesome. It took a long time though, and a lot of kilometres on my new bike, ha ha. Not complaining because every single moment on my bike has been awesome.
I also hope you're off it by this time next year. It's an awesome feeling, and one of the best milestones of treatment with this nasty little WG dog.
All the best!!!! Only the best!
The only problem with me is that I am not on any other maintenance drugs.My rheumy said that this may be the only thing keeping me in remission ???? I once went to 4 1/2 for 1 day and it was horrible.How can you tell if its just withdrawal or something life threating?
Hey Deb,Quote:
Originally Posted by Debbie C
I have a few comments, but I have to write a disclaimer and say these are my opinions, and I'm not a doc. Just saying what I think based on my own experience.
My doc, (who I believe is an angel sent to earth via Mayo Clinic, Cleveland Clinic and now University of Alberta Hospital, ha ha) doesn't believe in a drug free remission.
She told me that the research doesn't support the long term viability of a drug free remission. She didn't want me getting off my immune suppressants (Imuran)- ever.
Me being me, I had to try drug free, and went totally drug free for just under a year, and them BOOM, got smoked last April.
The flare I had last year totally sucked because it brought on some new symptoms that I've never had before (cavitating lesions in my lungs, eye involvement, pulmonary embolism, and a few others) and also each time you have an actual flare it's harder for the body and the meds to get rid of it, so avoiding flares at all cost is a primary goal.
I learned my lesson. I'm staying on Imuran for ever now. But I had to try myself because I operate that way, ha ha.
Second thought is that despite the fact that pred helps us so much, she doesn't like me on it. She lets me wean at my own schedule based on how I'm feeling (like anyone can tell me what to do and expect me to listen, ha ha ha, just ask my parents how that worked out for them,) but she doesn't like the long term pred use either. On a side note, I went to see her once for an appointment and there was a visiting doc from Mayo who she made me show my 'Pred Rage' shoes that I designed because apparently he absolutely hates the use of pred. He was an older gentleman with a white curled moustache and looked like the quintessential 1920's doctor who barely smiles.... he saw the shoes and his lip ever so slightly curled up to try and copy his moustache. It was a funny/odd moment. It looked like that was as much of a smile as he could make. I think he liked the shoes, and the idea.
My rambling point is that I don't know that using pred as your only maintenance drug is a good path. Maybe it's worth a discussion with your doctor. I'm sure they can consult with other WG docs or the literature to see the benefits of pred induced remission vs immune-suppresant induced remission. Just food for thought.
As for feeling crappy when you go down on the pred.
Yes, it's normal.
I find that it totally sucks.
It feels like it's setting off a flare, but like I said before, you start to notice the nuance between the pred wean feeling and actual symptoms. For me it's a feeling in the ears that only happens when I wean pred. All the other gross feeling is very similar to WG symptoms, but it seems to diminish within a few days. If, and only IF, you want to go down and give it a go, this is what I would try in your shoes... If you're at 5mg take 4mg one day, then back to 5mg for the rest of the week. You might feel gross the day after the drop, but then you're back on your regular dose for the rest of the week. The following week try it again and see how it feels. If the next day is just as bad, then do that again. Following week, maybe do it two times a few days apart and see how it goes. It will definitely feel gross but you can use those test trials to get a handle of the difference between the wean grossness vs the disease activity grossness, and that knowledge alone gives you an upper hand and a sense of control over the situation. I don't think anything 'life threatening' can happen within a day if you've had no symptoms otherwise for a while. I know our WG gig is scary but it can't take us down that quickly. I always tell myself that when I go on holidays and have that little fear in the back of my head... 'nothing serious can happen in a couple of weeks if I've been pretty consistent before those couple of weeks'. It can get us quickly compared to other diseases, but not that quickly, we always have some wiggle room to catch stuff before it becomes life threatening. Hopefully that eliminates that fear from the equation.
So there. That's my two wooden nickels.
Maybe some fodder for your next doctor's visit.
I hope with all hope that it works out for you regardless of what you chose to do. If you feel good on the pred alone and feel like you've got a handle on the disease, then who knows if it's really worth it to go this way. This is the beauty of this thing, life, we always get to chose which way it goes. I've made some bad choices, some good choices, but none that I regret (except for not taking the hand written Edgar Allan Poe book that I found in my grandparent's home in Bulgaria when I was 18, I regret that choice, but only that one,) because I've learned something valuable from every single choice I've made, good or bad.
Big big hugs and super strength (what I'm sending you)
Blah blah blah blah..... I just can't shut up.
:blushing:
Another quick side note:
My doctor was the first doctor to use RTX on a Wegener's patient in Canada in the 1990's.
That's pretty cool.
See why I love her so much?
:thumbsup:
Wow, Thanks a lot, marta, for all the info and techniques about weaning the pred.
2 questions, if I may ask:
1. How much time we better wait after the 100mg steroids IV of the rtx ?
2. What are your "pred rage" shoes ?
Last time that I tried to wean the pred (around 2013) I got CRAZY worst headaches. It felt like I needed to knock my head on the wall to stop the pains. If it will happen again I will quit. Some pains I can bear. Others I cant.
Hey beautiful Alysia,
I hope my rambling posts help someone.
I did everything as I was doing before during the RTX infusions. I started weaning a couple of weeks, maybe a little less (like a week and a half) before getting the first RTX, but I continue with everything as if there was no 100mg of pred during the infusion. You can see I blipped in my dosage on those two times, but otherwise I just continue on. I believe the RTX bump on infusion days is to minimize the risk of your body having an allergic reaction to the medicine. Between the 100mg of pred, the benadryl and the tylenol, I think that's all meant to help our bodies accept the magic elixir.
My pred rage shoes are the ones I had on that zazzle.com site where I had all the Weggie shirts, mugs, aprons, buttons and shoes that I designed for Weggies. I've taken it down since. It was way too much trouble a) dealing with their horrible customer service, and b) doing an American portion of income tax for the very very little money I got from it. It sold a lot, but I made it so that I got only a dollar or two from each sale (so most of it went to that company) and it became more problems than it's worth. I ended up being the only one who bought the pred rage high top runners.... yes, they are the only ones on planet earth. Ha ha. But my doc loves them.
I hope you don't get a massive headache, but like I was saying to Deb, you can do it so slow that you actually get to feel what the wean headache is like so that you don't worry needlessly. I think if you do it at the pace I mentioned above to Debbie, you can trick it into not hurting as much. At least I hope it works that way for you. I totally go according to my own comfort level, but it does go through a painful period in there. I think slower is much better than faster because that way you don't risk triggering a flare. So if you do want to do it, just take your time. I found this second time of a big wean, I went faster, but more controlled than the first (and I knew what to expect, so that made it easier too) and it didn't seem to hurt me as much as the first time. I think the familiarity and knowing which pain is what made it a much easier process.
Best best best of luck.
Wow Marta that is some great info....you have me wondering now if I should try. I definitely do not want a flare and I just can NOT handle drugs. They tried giving me Imuran,mtx ,rtx and it all made me very sick. I am just a big baby when it comes to taking medicine. Right now I have a tooth infection and am supposed to me taking antibiotics, I did take 2 but I had such a bad headache and I was walking around like a zombie for 2 days that I had too give it a break. I am going to Cleveland on the 11th of Oct so I will ask my rheumy then about something else I might take. When I tried to wean off before ,like I said, I felt like a junkie going through withdrawals. My whole body was shaking and my head also hurt. I don't know..its damn if you do and damn if you don't.
Sounds like you have a really good doc.
This thread is really helpful. Thanks Marta, for starting it and for all the detailed info on weaning off of prednisone. I want to try. I'm on 10 mg now and just had my second RTX five days ago. i'll wait a bit longer, as I feel like I go through a temporary withdrawal after the 100mg given with the infusion. In the days post-infusion I have been getting the same aches, headaches, etc. as when weaning down. So I'll wait until I'm back to my own personal normal (if I wait until I feel good or well, I'm afraid it might not happen; I can't remember the last time I felt consistently good for a while. I'm praying the RTX will accomplish that, but don't want to assume anything as I know it affects everyone differently).
Everyone is right, you're beautiful at all the different stages in your pics. I also understand the feeling of looking in the mirror and not recognizing yourself. I feel so shallow for being so fixated on it, but the extra weight and seeing my chipmunk cheeks in photos upset me immensely. (My profile pic is from a few months back before i went up to 10 mg and started puffing up. :wink1: Who wants their pred uglies to be their profile pic, after all?)
I'm always amazed by other Weggies' stories of biking, skiing and hiking and don't really understand how you do it. Is the fatigue less of an issue for some? Do you just push through it amd go anyways, and does that eventually make it improve? I've had brutal fatigue for years, long before diagnosis (initially diagnosed as fibro, then RA, now dual doagnosis of RA and GPA and nobody has discredited or confirmed fibro). Every single time I try to get back into some form of exercise other than walking (even yoga), I end up in muscle spasm and pain, fatigue, flare, or all of the above. It's discouraging and I don't want to just give up, but I'm not sure how to plan for success. Maybe i just have to do dog walks for now and hope the rituxan gives me superpowers. I felt a little better yesterday and went for my first decent walk since the infusion, and did a few things around the house. I tried really hard not to overdo it. Today I'm a mess again (pain, neck all jammed up, no energy). So I'm back on the couch. Doctors and well-meaning non-spoonies are constantly advising me to exercise. I feel that until they've lived my reality, they have no clue. So I'm bringing it up here in the hopes that you or others who deal with this might have some concrete advice that works. Sorry to whine a little. Sorry it's also a little off-topic. Hopefully it's related enough that everyone will forgive me.
Hey all...I got information from Dr Villa Forte last time I was in that there was an alternative to Prednisone coming that was pretty far into trials. Works a completely different way...so we may have some hope there.
Lisa, one thing I recently found was that I had low ferritin. My other anemia scores had always been close to normal, but the ferritin was about half of the minimum and 1/5 of the optimal range. The result of this was CONSTANT fatigue and a bunch of symptons that matched up with the Wegs...which I naturally blamed. I started taking an iron supplement and have been able to get down to 3mg prednisone. I have hope to hit 0 after getting an infusion yesterday. I didn't want to start reducing further before the infusion.
That sounds amazing!!Quote:
Originally Posted by Psyborg
I'll ask her about it when I see her in the morning. Getting rtx tomorrow also.
We got to see the Indians play (and win) today.
I asked Dr Villa Forte about the pred replacement. Apparently it will be used to treat flares and new cases. Probably won't replace low dose pred for maintenance therapy. Also, it's a bit over the horizon as far as trials are concerned. :-(
My rtx went well today. I'm tired but not sleepy. Funny how Benadryl and steroids interact...
Oh Lisa,
I so totally get that feeling of being completely spent and hearing the 'outside world' give advice on exercise and how to treat your disease. It use to drive me nuts at the beginning, but now I just let them say their thing, knowing full well that it's completely well intentioned, and smile and then ignore them. They're just trying to do whatever they think they can to help. I always say that it's easier being the Weggie than the loving bystander. At least we know we're doing something even if we're on the couch surviving.
I also get that feeling of looking in the mirror while on pred, not recognizing yourself, hating what you see, and then hating yourself for that reaction. I think we're so hard on ourselves. "Don't be so vain Marta", and then your family catches you being disgusted at that moment you catch a mirror glimpse, and you hear "Don't be so vain Marta. Nobody cares." Then you go downtown and see people you've known for decades who can't recognize you from two feet away until you open your mouth and they hear your voice. It sucks. It so totally sucks. I feel like crying just thinking about how much it sucks, but you can't react to it because instantly there is a label of 'pride and vanity' attached to this reaction. Then you hear people say.... "Yeah, well I'm fat naturally, so don't complain." What I want to say is (and I will here because this is a safe space for Weggies) "Yeah, but you didn't go from your normal look, that you've had for decades, to THIS in 3 weeks. You got to get used to how you look over a long period of time. It's not a shock that a stranger is looking back at you every time you go by a mirror." But you can't say that because then it becomes twisted into a vanity thing again. I'm not a vain person. At least I don't think I am. I don't own make-up. I don't spend a bunch of time in front of the mirror. I don't spend a bunch of money on wrinkle cream. I probably should. But I don't. So it really really gets my goat when people tell me not to be so vain when I'm hating my pred equivalent of bad plastic surgery. There. I have vented. Sorry. But anyone who hasn't been on pred and have had their entire body, face, look drastically altered because of it, can't be giving advice on this one. That's why I wanted to post those pics though. Because when you're in the thick of it (ha ha - pun not intended) it's hard to see the other side, and it feels like you're stuck here for ever.
It has sure given me so much empathy for people with weight issues though. I can feel the judgement from strangers. I can see how people treat you different if you're skinny compared to when you're big. Living in a pred body is hard, but at least we know we have an out, my heart goes out to people who are stuck there indefinitely and how society treats them.
My biking and skiing. I think I might be a bit of an adrenalin junkie. Well maybe not that far, but I sure do love the wind in my face. Skiing I use to do before getting sick, so I've got a good handle on the sport and once you know it, it's a good one for a weggie. The ski lift does all the work on the way up, and gravity on the way down. I'm generally pretty good at staying upright. ;) Biking was my fun sport before getting sick. I am lucky too because I can go out of my yard and be on a mountain bike trail in less than a minute. I also have a lot of options around here. I hadn't biked much at all since getting sick in 2010, but I got an e-assist bike for Christmas last year and I would recommend it to anyone who has a love for biking but doesn't have the strength to do it anymore. I'm almost at 3,000km since I got it mid January 2017. It has given me my life back. I bike with Brian and can keep up, we go on trails all over the park, we go on the road (him on his road bike and me on my Mr. Fasty bike - that's what I call it). I've even become a much better technical biker because I'd much rather ride through the hard stuff with the help of the motor than have to get off and push it up technical hills or sections. I avoid pushing like the plague (it makes me super tired) so I bike some pretty gnarly stuff. Funny, I know. My sister in law, got a similar bike to mine and used up her 'Health and Wellness' financial assistance from work. Her co-workers were getting gym memberships and stuff, and she used it to get an e-bike to ride to work every day. Cool idea to get someone else to pay for it. I can say with complete certainty, that the e-bike has been if not the best, the second best thing towards my healing from the last flare. Physically, emotionally, psychologically....the best. I can't recommend it highly enough. It's an expensive purchase, but what you get from it is freedom, movement, fun, total joy, friendships, sociability.... I think they'll start popping up second hand soon enough.
Fellow spoonie, sounds like you might have overdone it. I always wonder if I'm outpacing my ability. Questions questions questions.... another gift that keeps on giving with WG. Ha ha. Enjoy your couch without guilt. Too much guilt in our world. I have a way of getting rid of that too if you're interested. Marta, the giver of advice....whether you like it or not - he he. (But I haven't felt guilty about anything since I got rid of my guilt, and it's almost as liberating as getting off social media, LOL, just kidding, it's way more liberating.)
Sending you love, healing and strength.
P.S. Doctors are well meaning non-spoonies when they try and get you to get off the pred really quickly too.
Congrats on RTXing the living daylights out of WG.Quote:
Originally Posted by Pete
You know what I do every time I get RTX zapped?
I say goodbye to all my B-cells every time I pee and go to flush the toilet.
I thank them for the time we spent together and wish them a great journey down the pipes.
Then I have a little giggle by myself in the bathroom and walk out as if nothing happened.
May healthy days go on for decades.
Peace Pete...stay safe while you do your best impression of a newborn baby (we have the same immune system as them after RTX.)
Thanks, Marta!
I also discussed another pred taper with Dr VF. I was thinking about tapering at 0.5 mg/month. She thought that might work, but reminded me that 1 mg pred pills are very difficult to cut, so she suggested the following:
Month 1: Alternate 5 mg and 4 mg (average 4.5 mg/day)
Month 2: Alternate 5 mg and 3 mg (average 4 mg/day)
Month 3: Alternate 5 mg and 2 mg (average 3.5 mg/day)
Month 4: Alternate 5 mg and 1 mg (average 3 mg/day)
Month 5: Alternate 5 mg and 0 mg (average 2.5 mg/day)
Month 6: Alternate 4 mg and 0 mg (average 2 mg/day)
Month 7: Alternate 3 mg and 0 mg (average 1.5 mg/day)
Month 8: Alternate 2 mg and 0 mg (average 1 mg/day)
Month 9: Alternate 1 mg and 0 mg (average 0.5 mg/day)
Taper is (hopefully) complete.
Just waiting for the scrips to hit the pharmacy...
That's a good one too Pete. I have only tried cutting 1mg pills once. It sucked. That's why I do the alternating thing as well, but I tried this system that she suggested (the first time I was weaning) and found the jump between days a bit much. That's why I would play around with the averages based on how I'm feeling. You can always work toward an average and play with the doses to suit your body. Mine didn't work with the above methodology, but it did with me just listening to my body. That's why I don't have an exact recipe, because we all react different to this 'wonder' drug.... ha ha 'wonder'.... but mine is pretty similar in the averages, just goes about it a different way.
Month one: Alternate 5 and 4 (average 4.5)
Month two: Just take 4 all month (average 4)
Month three: Alternate 4 and 3 (average 3.5)
Month four: just take 3 all month (average 3)
and so on and so forth.... until that magic month when you realize you're at .5mg/day and next month is nothing.
Anyways, as long as you know that this is a longish process and are not hard on yourself with the time it's taking, I am sure you will do great. Also, like I said, you might have issues at various times, and what they don't tell you is to go back to the last dose that you felt OK at, steady yourself for a bit (week, two weeks... whatever you need) and then try the taper again, but maybe a little less drastic of a drop.
Looking forward to reading how it went.
Big massive hugs.
I think the alternating method is easier but I didn't use it to get down to 5 MG. I did use combinations though of 5, 2.5, and 1's and did cut the 2.5 in half and went down by .25 every two or three weeks according to my symptoms. I had few problems going this very slow way but some people rather go real quick and suffer a bit along the way in order to get off or get down lower quickly. Sort of personal choice. I am considering trying to go down to 4 mg and might try the alternating method to do that.
Oh hello old friend. I haven't been on here much at all, and I only come on when an email tells me to come on, ha ha ha. I'm pushed around by emails.
It's so nice to see your picture, and words of wisdom again.
I have nothing intelligent to say but wanted to come on and say a big fat hello, and send you even bigger and fatter hugs.
LOVE IT Marta
thank you for sharing this is going to help me.
love your smiles and your so beautiful
I will be grateful to read about your techniques of weaning pred. I still have no idea how long I will be on them for (never explained to me from Rheumy) started at 50 mg sept 12 and down to 20 mg starting today for 2 weeks and then 10 mg. I want off it, I can't handle how it effects my moods and all the mood swings I get. Going down my 10 mg each time, isn't that lot's at one time to lower it?
Quote:
Originally Posted by marta
I am trying to understand how you go down to say 4mg when the pills come in 5 mg dose? Something I am not understanding or miss reading. I started at 50 mg Sept 12 and down to 30 for the last week and now starting today down from 30 to 20. I think this is just too fast, but this is the order's by Rheumy and then in 2 weeks I go down to 10 mg and from there I don't know the dose.
I now understand my my mid back hurts so bad
I'm reading all the post here to learn about weaning. Am I reading it correct, you and other's were taking 100mg a day of steroids? or was this weekly?
Wow, still so much to learn.
Quote:
Originally Posted by LisaT
Hi Susan,
Some folks on here were, indeed, taking 100 mg/day of pred. I never took more than 60. Initial tapers from high doses can proceed faster. From 60, I dropped 5 mg every two weeks. Once I got down to 20, the taper got much more gradual, especially once below 10 mg. Your body, when healthy, generally makes about 10 mg/day of cortisol, the hormone prednisone replaces. The body needs more time to resume normal production. In some cases, it doesn't, and a daily low dose is needed.
I had no idea weening may get more difficult ... down to 20 mg now for a couple of weeks. I will post my story soon if I can stop perusing all this great info ... :)
Attachment 2629Quote:
Originally Posted by marta
P.s. 1. I took today for the first time in years only 4mg pred. Going to try first only one day a week with 4mg for a while. Then 2 days etc. Only if I will not get the crazy headaches. I dread them. Thanks for the guidance and inspiration marta ❤
P.s. 2. I am also on budezon for my colitis. It is a much more friendly steroid with less side effects.
Yeah Alysia, I hope it goes well. I don't think you'll notice much of a difference with taking 1mg down, once a week. I hope it goes completely painless for you and that you see that it is in fact an achievable goal. I know you'll do great.
Susan, the 100mg of pred I only took while getting Rituxin infusions, otherwise I was on 60mg at my highest as an ongoing thing. Once during this exercise I have had three days of 1,000mg of solumedrol. That's the equivalent of about 1,500 mg of pred (so like 4,500mg of pred in three days - woooooo hoooooo.) That's when things got really bad and they wanted to use the steroids to completely knock the crapola out of the inflammation process. It was a crazy weird experience. Remember the Seinfeld episode where Kramer got free coffee for life with a lawsuit he was initiating against a coffee shop. The last scene of the episode he was talking a mile a minute because he was so hopped up on coffee??? That was me on solumendrol. People came to visit me in the hospital and I just couldn't shut up. Super fast too. It was hilarious. People's jaws would drop seeing me so full of energy. "I thought you were sick" they would say. It was during this spell that I put together the survey for Weggies that Andrew promoted on here and we ended up having the results get published in a medical journal last year. So good things can come out of a steroid high. Ha ha.
Actually when you make it through each ordeal, much of this experience is kind of funny in hindsight.
Hey Sue,Quote:
Originally Posted by Susan55
you're dropping super quick by the sounds of it.
I know you're an old pro at pred, but this is a different animal (WG) so be very aware of how you're feeling and adjust accordingly.
I remember reading many discussions in my early days on here about people weaning too fast and setting off a flare.
The problem with setting off a flare is that it's been shown that with each subsequent flare, it's harder for the meds to work and it takes more medication to do the same job as before. I personally do anything to avoid flares like the plague. So if weaning the pred a little slower will potentially decrease the chance of triggering a flare with the wean, do it.
Bellow 20, you should be dropping in much smaller increments. My first go I flared at 17.5mg. It also coincided with me getting a flu shot (which is when I actually made the connection of my trigger, but that's a different topic) but just worth knowing.
As for the smaller increments. Ask your doc to give you prescription for 1mg pred. You will certainly need it below 10mg, and also once you get bellow 20mg it helps with managing the dose and wean much better. Call me at home if you wanna chat about it.
If something is hurting bad, I would recommend going back to the last dose for a bit until it stops, then do a much smaller drop and see how you feel with that. Doctors really like to tell us how to wean fast, but I'm certain than none of them (or very few if any) have been on high doses of steroids for extended periods of time. That's why my doc is so awesome. She really leaves it up to my discretion on the speed of the wean.
Hi MartaQuote:
Originally Posted by marta
I totally agree with you and I've been thinking to my self wow she is dropping the dose way to quickly. When I would take it for COPD, it would go down by 5mg etc etc.
And I have to wait to more weeks to see her :(. I also don't like how I have to start treatment and wait ONE month to go back to see her! I tried calling her office to go in last week and they said "sorry were booking for the new year now" . So, if I have symptoms and needs answers I just sit at home and wait. I don't like this at all and not happy.
When I saw her 2 weeks ago, after exam (and previous stomach issues which I was told it was nothing by family Dr) she said I believe you have Pancreatitis and if symptoms get worse (which they have) we will have to change your meds next time I see you. So, since the lower of the dose so quickly I am feeling so much more
back pain, stomach pains and swelling. OH and my rash is slowly coming back since the dose has been lowered and it feels like I have a cold coming on :(. I think it's all from the dose being
lowered to quickly.
My tummy is swelling up so big I look 5 months preg , lol. but so very painful and back hurts so bad. I'm not sure how to find a dr I can just call the office and ask questions as to what to do etc.
My son is here visiting from San Fran so I will call you Tuesday if that is OK? I'm having such a nice visit and I'm actually laughing for the very first time in months. Yes, I have the pain etc, but having him
here is really helping me mentally.
HUGS TO YOU MARTA XOXOXOXO
HAPPY THANKSGIVING TO ALL MY CANADIAN WEGGIES
Hi MartaQuote:
Originally Posted by marta
Wow, I can't begin to imagine being on such a high dose and hope and pray I don't have to go there one day. When I was just taking 50mg my head and thoughts were not clear in anyway. I hated every second of each day, it's the worse drug I have ever taken that I dislike so much. For a short period of time (when taken for COPD flareups) I could handle it, but this is crazy, lol.
I admire you for your strength and your fight and your so positive along with the rest of the group. I'm not there just yet :(. Trying to get there mentally but it will come.
But I do need to talk to you Marta and will call you Tuesday..sue
Hi AlysiaQuote:
Originally Posted by Alysia
Love the pic you posted...yes that feels like us weggies for sure and your right, just walk away from people and their comments. I understand some are just wanting to help, but when they give their comments with attitude then I don't like it at all! That's what I am getting from a friend. But, I am just staying my distance from her for a bit and when I do see her I don't want to talk about it. I have enough to deal with right about this time.
Now, having to look into the mirror when the swelling gets bad not sure if I am ready for that or not. I guess I have to be nothing I can do to stop it, it's just all part of the gpa and have to take it one day at a time and still learn to love my self for the person inside this different body.
I hope your 4 mg of pred help, please keep us updated how your doing.
Hugs Alysisa
Hi Sue,
Thank you for your caring ❤
I am sorry that your symptoms are back because of reducing the pred too fast. Go back to where it was ok and after feeling better start to reduce in 5mg each step. Dont continue to reduce until you feel good enough.
As for people who do understand, here is another one :
Attachment 2632
Or this one :)
Attachment 2633
How did this thread get the titled dropped? Anyway, I put it back on.
Marta, I haven't seen this much from you in the past 3 years! Way to go, girl!
I hope Bob is right on there being a pred sub. It is a wonderful, but evil drug.
Good thread guys.... lots of good info.
Hi AlysiaQuote:
Originally Posted by Alysia
I'm just wondering if I should increase the meds or wait until I go to the the lab (tomorrow) the Dr. wanted to see if med's were working or not. Not sure if it would show up in blood test if inflammation is going down or not. I don't know what blood test whould show that or could show that. Still learning what each blood test will show the Dr.
I am sleeping so much better on a lower dose of pred but symptoms are worse. OH what to do. I'm think wait until after blood work tomorrow and then increase it. shouldn't I get going down by 5mg week? not daily right? I also see my face seems fuller, darn.
Love the pictures so much, it so just nice knowing all of you are here with so much support for us new people (everyone here) and I just want to give all of you big hugs.
My son leaves tomorrow :( Then back to being alone. Having him here I think is why I am finally sleep a bit more. Having way less anxiety with him here.
Hi Sue,Quote:
Originally Posted by Susan55
It can be a good idea to do the labs first although I am not sure how much difference it can show with the different doze of pred... ??
maybe anyone else around knows ??
You reduce in steps of 5 mg every week and according to your feeling. Listen to your body like you did with the pred when treating the COPD. Its the same pred.
Are you on 20mg now ? Maybe you dont have to go back too high, maybe you can just add 5mg (total 25) and see if it helps ? Sometimes a bit more is all you need to stabilize yourself.
My update: Sorry to disapoint.. I quit. The try to take 4mg pred for one day, made me again that specific CRAZY headaches which dont respond to pains meds. I know it was the reaction for the lack of pred because my ears and joints also ached. It lasted about day and half. So that's it. Me and my 5mg pred for life. At least I sleep well and dont gain weight. The cataract will still be there and I try to excercise to keep my bones.
Sue, Please remember that none of the people on this forum are doctors and we can't give advice on what you or anyone else should do with regard to drugs. All we can do is tell you what our individual personal experiences have been and then you have to take what you can from that. Always follow your doctor's advice.
Absolutely 100% what vdub said.Quote:
Originally Posted by vdub
I only share what my experience has been and would never ever ever tell anyone to do anything.
I had the support of the people on this site when I had a doc that was not watching out for my best interest, and at that time I didn't feel comfortable having conversations with my doc to question my treatment. I know the strength and support I got here got me to my new doc that I can't imagine life without, but all of the decisions are made together with her - I'm very lucky to have a doc who isn't motivated by pride and can have a convo with a patient. But what I say on here is not in any way to be taken as advice of what to do. I am not a doctor. I'm just another Weggie, just like everyone else on here.
Peace y'all.
Hey Sue,Quote:
Originally Posted by Susan55
I'm seeing my doc on Friday and I'll ask her to tell me the name of a doc she highly recommended in Vancouver. I went to see 'Symphony Under The Stars' at the Fairmont Jasper Park Lodge and ran into her (my doc) at the concert. We actually spoke about you and she told me about this new lady in Vancouver and told me the name but I was having so much fun that I forgot it when I got home. Then I had Hana's surprise Birthday Party and immediately to Edmonton for my daddy who was in ICU while we were dressed in zombie outfits for Hana's b-day. I'm in the city right now because my daddy is in the hospital with congestive heart failure, so I'm near her. When I see her I'll ask again for her name but man she was highly recommended. Every doc, my doc has recommended has been truly amazing. I'll let you know after Friday. I'm going to a funeral on Saturday but will send you a note Sunday or Monday.
In the meantime I send you healing jujus, and strength.
Hey Marta
So happy to see your out having fun and enjoying life ! I've been to a place here in Surrey where you can see movies under the stars and it was fantastic and so much fun. I am so sorry to hear about your father hope he is doing better, please keep me posted
Yes, please do get me her name I would appreciate it very much. I saw my Rheumy yesterday and told her how when I get MTX my get SOB and I'm sounding like a seal when I cough, but she really didn't say a word. Just listen to my lungs and said keep taking the meds and see you at the end of December. She is going on holiday for 5 weeks and no one to cover for her. I asked who do I see if things are not going well, she said to go to my family doctor. So her receptionist didn't have an openings in December so I will see her again at the end of January. I asked if blood work comes back wacky what do I do, oh stop MTX and wait till I see you. Yes, I would like to see another Dr. but then who will give me the referral to go see a new dr, lol. My family doctor has been trying for weeks now to get me in to see a Dr. Natasha Dehghan in Vancouver, but this doctor wanted a copy of my CT Scan of my lungs which my family dr didn't have or couldn't seem to get a hold of it, so I found out two or three weeks after she made the referral. So I came home and faxed it to her office (which she asked me too) I called the next day and they said they didn't get it yet, so I then emailed it to them. Called them two days later and they still can't find the fax or the e-mail ..ok something is wrong, so I drove over there and gave them a copy on Monday of this week.
Anyways, again I am so happy to hear from you :) please keep me posted about your Dad, hope things get better. Hug to you
Happy belated Birthday Hana :)
Marta;112302]Hey Sue,
I'm seeing my doc on Friday and I'll ask her to tell me the name of a doc she highly recommended in Vancouver. I went to see 'Symphony Under The Stars' at the Fairmont Jasper Park Lodge and ran into her (my doc) at the concert. We actually spoke about you and she told me about this new lady in Vancouver and told me the name but I was having so much fun that I forgot it when I got home. Then I had Hana's surprise Birthday Party and immediately to Edmonton for my daddy who was in ICU while we were dressed in zombie outfits for Hana's b-day. I'm in the city right now because my daddy is in the hospital with congestive heart failure, so I'm near her. When I see her I'll ask again for her name but man she was highly recommended. Every doc, my doc has recommended has been truly amazing. I'll let you know after Friday. I'm going to a funeral on Saturday but will send you a note Sunday or Monday.
In the meantime I send you healing jujus, and strength.[/QUOTE]
Love this poster you made ...I keep looking at it as my face is not getting puffy and the weight is coming on ..but hey nothing I can do but go with the flow.
Quote:
Originally Posted by marta
Thanks, Martha.
What are those symptoms when you are in the 10mg-5mg range?
Thanks,
Ed.
Hi Ed
Not sure if your asking me or Martha :)