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Thread: Pred Uglies

  1. #21
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    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.

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  3. #22
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    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.
    Life isn't about how you survive the storm, but how to dance in the rain !

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  5. #23
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    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. 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.
    Last edited by LisaT; 09-25-2017 at 06:19 AM.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

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  7. #24
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    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.
    ~ Bob

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    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.
    ~ Bob

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    Quote Originally Posted by Psyborg View Post
    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.
    That sounds amazing!!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    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.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    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...
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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  17. #29
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    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.

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  19. #30
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    Quote Originally Posted by Pete View Post
    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...
    Congrats on RTXing the living daylights out of WG.
    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.)

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