I have been in a double blind study since this past fall. I honestly do not know if I am on the drug or not but I do know that my inflammation is out of control. My rheumatologist tried to raise my steroids twice doing the 3 day pulse, with me just getting back the pain and inflammation as soon as i went down just 5 mg. This time I am staying on the higher dose for 10 days. I think she is trying to do this before starting me on either Imuran or Cellcept. All I know is I am very tired of being in pain. She (my doc) also mentioned that i might have to ask my pain doc to raise my narcotics. So ironic since all I try to do is decrease the amount of narcotics I am on. I know I have to find a way to manage (operative word) my pain but I so so resent it! How can I still be fighting this disease so hard after over 20 years? Why do I feel like If I accept it I am actually accepting being defeated BY the disease? I am in a bad way both emotionally and physically and could really use some insight from those of you who are in a better place than I am today! Thanks for listening too my venting!
I feel your pain. I’ve had to do the same thing with the steroids. My last visit I was in such a bad state we went from 6mg every day to 16 for 4 days then 8 every day. It was also in conjunction with changing my med from imuran to myfortic which I seem to be tolerating much better. All I can say is hang in there, rest when you need to, and find anything that takes your mind off of how crappy you’re feeling. I hope you start to feel some relief soon.
I completely understand! I was down to 10 mg of prednisone, had a bad flare and am now up to 60 mg. I was given pulse steroids in the hospital as well. I find being on steroids very frustrating; the weight gain, swollen cheeks, not to mention vascilating between being exhausted and not being able to sleep. Yuck! Can you quit the study and try to find a drug that works? I’m on my 5th drug, Actemra, and have my fingers crossed. Good luck!
I have had Lupus for over 20 years now and have been having more bad days than good. I am not on steroids at this time, My symptoms are pain and fatigue. I have been on Enbrel for about 5 years now. Since my symptoms tend to be more RA , this does help. I have noticed that the change in weather is very , very bad. If a low pressure system is coming in , than I can not even move without severe pain, shortness of breath and fatigue. My rheumatologist (seeing him for 22+ years) told me flat out that it is a progressive , chronic illness and I may continue to have more flares. I was angry at first but then was glad for his honesty. Rest physically AND mentally, exercise (push yourself to just walk a little, nothing too strenuous), meditation and positive thinking. embrace your good days, take one day at a time. Venting is so good for you and know that you are not alone, you are not doing this to yourself, and you have support from those of us who understand your pain and frustration. hang in there. I hope you are having a good day soon.
Although it sounds like you are in a "Catch 22" with the meds, you will NOT be defeated by this disease. I know you will have better days ahead. Sometimes we take one step forward and 10 back. I use a combination of prednisone and pain killers occasionally---I have to use the pain killers when I am trying to get off steroids or reduce the dose. I just can't take less than 5mg of prednisone without the pain coming back and immobilizing me. I do take 5mg one day and 10mg the next which seems to work better than the same dose every day. I know this approach is sometimes used with thyroid replacement meds. Everyone is different regarding how their body responds to meds. I understand your frustration--and after 20 years! Wow. You ARE a survivor although a frustrated one at this time! Have you participated in a trial before? I know my doctor has pressed me to get back on Benlysta infusions (it didn't work the first time back in 2011) but she says now research shows it should be administered 6 months to a year before success or failure can be determined. I was on Benlysta for only three months. But I have told her I want a "vacation" from trying different things. I wish I could get off steroids for a myriad of reasons, but right now I am in a holding pattern as I am doing OK---not great or even very good but OK. I was on Acthar injections the end of 2013 (I gave them to myself) and I was so swollen and miserable. I told my doctor (rhemy) no way would I ever take that "off label" (i.e. experimental) med again. Jammingirl, it will be interesting to read your replies. I am sure you will get some "words of wisdom" in response to your post. All the best to you, Lupancatwoman
Hello Jammin and Jend
Wow all 3 of us should meet for some tea & snickerdoodles (Or a glass of wine & chocolate mousse ) LOL. Im in a life changing/challenging place. I decided to end my ever tightning noose to prednisone. Im @ 8mg/day. Ive been on as high as 60mg/day. Ive been down the imuran, cell cept, vioxx,bextra, voltaren, meclomen, & more recently Lyrica road to nowhere. I need back surgery (thx steroids). No one will agree to do it. Unfortunately my high end sterouds were from SEVERE Cerebrites back in 1997. And since many (of much lesser severity) strokes, TIAs, seizures, vasculitis,heart inflammation to most recent early signs of pancreas inflammation. You might ask why then lower the steroids. Im soooo tired of the health problems the steroids hv caused verses the actual Lupus. As long as I hv no clear clinical findings in my labs, i will keep reducing 1mg a mo. I will hold all the remaining mgs 6 to 8 wks depending on lab finding. Every time i hv been down to 5mg, I hv a TIA. Untreated by @ least an increase to 40mg prednisone I hv either a stroke or inflammation somewhere that only steroids will help get under control. I am already dependant on narcotics. I am willing to deal with the addictive/resolution of getting to an acceptable therapy of my narcotics to get OFF of the steroids. My orthopedic (who will not do my surgery) might change his mind if Im off steroids, knowing Id ONLY agree to reinstating steroids following surgery with a 3 to 6 mo titrating sched to get surgery done. BUT, if I cannot get surgery, Ill be damned to stay on the very drug that distroyed my spine. It is of my opinion, everyone has a point in the life of being a Lupus sufferer, to get to a point of relying on courage & faith. Well, Im there. Half of the 12 meds I take are becuz Im on steroids. I am ready to deal with any consequence getting off the steroids. I went from being an active working single mother of 5 to somone who can barly walj to the bathroom in the morning. Im ready. I pray for all of us. I will pray even more.Good luck to you both as you figure out what/where your personal limits are. I do agree tho, as long as we hv clinical findings (positive labs), even I know sometimes stetous must be part ofsaving our lives. I just keep praying for what seems to be a clinical remission to get off those damned if I do/ dont steroids. I will undoubtably need help reducing the narctics when this is all over & done with, but that will be worth it to be rid of the steroid grip & hopefully get my back surgery. Thx for my venting today. To all of who reads thus, i pray for all lupus peopke all over our world. Margaret in Calif.
I am right there with you guys. It seems that everytime I get off prednisone, I am back on it. I am back on 20 mg daily, along with my other cocktails. it is so very frustrating. Currently I am having a bad flare of the lupus rash on my face, arms and chest. It didnt bother me before, but it seems to be getting worse. I am getting the "looks" when people talk to me, like they want to ask but dont. Funny story I had an appointment with my hair stylist to get a hair cut. She asked me if I had just got my eye brows waxed. I said no, its just my lupus.
Guess just something we, I, have to learn to live with....Gentle hugs everyone.
Cheryl
I want to thank everyone for all of your replies, it really did touch me!I have been on two other biologic drugs,Rituxamab and Benlysta -for that drug I felt it was helping me but then I had a serious reaction to it and was hospitalized. My doc said no more to the Benlysta. It really is a catch22! The weather is a huge factor yes I completely agree with that!
I have been sober and in recovery for 20 years so the narcotic issue is a painful one for me. TodayI only take meds as prescribed and , if anything, sometimes I take less than I probably should. I do resent the narcotics so much but am able to see that w/out them I might not have been able to raise my 2 boys (19 and 15, now). maybe I am afraid that if I accept this disease I am letting it defeat me and that could be why I feel in a constant fight w/ SLE.
I am grateful to have a loving husband and excellent medical care, I do know that there are so many things I am fortunate to have. But the venting on here does help so much and even w/out meeting you the compassion and I understanding I get from this site is immeasurable. Thank you for being there in cyber space listening to me bitch!!!!
Iv been on steroids for 4 months and its been hell. Cant wear my ring, jeans, or any of my nice shirts. I dont even eanna go out in public anymore. Gained 15 lbs amd with prom next month i am just going crazy. Just doesnt seem fair, everyone gives looks and think i just got fat. You can feel my body! Its rock hard! Its not fat! I hate steroids.
Wanna*
I totally understand about the “accepting” lupus. I have said that to family members so many times. I used to have the same dream over and over of being in runners shorts and being thin again. I am running fast and in the dream I feel amazing. Now I have never been a runner. But the dream gives me hope that I can indeed beat this.
Oh and lupancatwoman I also took Acthar last year. Still trying to lose those 35lbs!
i dont think your accepting defeat. you are very brave to step up and be on a blind study that could in the long run help the rest of us xoxo. for my pain i have found that patches work i dont wake up in the middle of the night in pain and have to sit up shaking until i can get it under control iam on 30 micro grams, i also inject 25mg of methotrexate every 5 days that has really helped with my joints if i dont take it i can not move my fingers.iam on lmuran too
lupus seems to like my spine i had my L5-S1 operated on and received nerve damage because i was told by the surgeon it was a pain problem and i needed to go to pain management clinic but i ask if i could have an mir he said no at first but i told him i was not leaving with out one. he rang at 9 the next morning and was told not to bend or left and go to hospital as i needed an operation..iam incontinent and iam leaning how to use my left leg again. i am proud of my self for standing up to him. it felt good to say i told you so and am greatful that iam walking i have to have on C4-5 done when i heal or if it gets worse
every time i go for bloods if think what has it affected now. every time i get told it has affected something else i just laugh and say just add it to the list. i get upset at doctor in the er when they go off half cocked and try to change something.iam lucky that i have a supportive partner that tells them not to do something with my drugs when iam to sick to talk,
so again thank you for the work you are doing for the rest of us you should be very proud of your self
iam on hydrocortisone for life as i have secondary adrenal insufficiency thank to steroids
MUGS said:
Hello Jammin and Jend
Wow all 3 of us should meet for some tea & snickerdoodles (Or a glass of wine & chocolate mousse ) LOL. Im in a life changing/challenging place. I decided to end my ever tightning noose to prednisone. Im @ 8mg/day. Ive been on as high as 60mg/day. Ive been down the imuran, cell cept, vioxx,bextra, voltaren, meclomen, & more recently Lyrica road to nowhere. I need back surgery (thx steroids). No one will agree to do it. Unfortunately my high end sterouds were from SEVERE Cerebrites back in 1997. And since many (of much lesser severity) strokes, TIAs, seizures, vasculitis,heart inflammation to most recent early signs of pancreas inflammation. You might ask why then lower the steroids. Im soooo tired of the health problems the steroids hv caused verses the actual Lupus. As long as I hv no clear clinical findings in my labs, i will keep reducing 1mg a mo. I will hold all the remaining mgs 6 to 8 wks depending on lab finding. Every time i hv been down to 5mg, I hv a TIA. Untreated by @ least an increase to 40mg prednisone I hv either a stroke or inflammation somewhere that only steroids will help get under control. I am already dependant on narcotics. I am willing to deal with the addictive/resolution of getting to an acceptable therapy of my narcotics to get OFF of the steroids. My orthopedic (who will not do my surgery) might change his mind if Im off steroids, knowing Id ONLY agree to reinstating steroids following surgery with a 3 to 6 mo titrating sched to get surgery done. BUT, if I cannot get surgery, Ill be damned to stay on the very drug that distroyed my spine. It is of my opinion, everyone has a point in the life of being a Lupus sufferer, to get to a point of relying on courage & faith. Well, Im there. Half of the 12 meds I take are becuz Im on steroids. I am ready to deal with any consequence getting off the steroids. I went from being an active working single mother of 5 to somone who can barly walj to the bathroom in the morning. Im ready. I pray for all of us. I will pray even more.Good luck to you both as you figure out what/where your personal limits are. I do agree tho, as long as we hv clinical findings (positive labs), even I know sometimes stetous must be part ofsaving our lives. I just keep praying for what seems to be a clinical remission to get off those damned if I do/ dont steroids. I will undoubtably need help reducing the narctics when this is all over & done with, but that will be worth it to be rid of the steroid grip & hopefully get my back surgery. Thx for my venting today. To all of who reads thus, i pray for all lupus peopke all over our world. Margaret in Calif.
Hey jammingirl,the statement you made about accepting it will make you feel defeated,I wake up everyday in denial,I’ve had lupus for many yrs,I can remember losing control of my hands then,I was a track star,jock in school,I grew up a country girl with all brothers and crying was for babies,I would come home from a track meet and cry like a baby in the shower,no one in school knew I was sick,it was such a huge secret…I didn’t want people to treat me different or let my illness define who I am,so denial has served me well through the yrs."However the last 5yrs is another story…"my husband said a few months ago,“you think your fooling people”!!“your not”!!..everyone in this family has watched you go down hill!!.."You are the only one who can’t see it or won’t admit it!!!Like you I guess I’m afraid to admit it to myself,I do believe your mind is capable of making you sicker so I try not to think about all the things that are wrong with my body…call it denial or whatever people choose to call it…I try to stay busy regardless of how bad I feel,I suffer from bad anxiety and I have OCD,which is anxiety driven…so I’m sure I have the cleanest house in town and find I can’t allow myself to function in a mess,I believe there is a place for everything…However I do start the day with a hot shower and a good cry…my body is finally starting to give up in more ways than I can admit…I’m stubborn and need to give myself a break sometimes and it sounds like you need to do the same …I do tell myself all the time,I am my own Hero!!! You are your own Hero jammingirl!! Everyone with lupus is a Hero!! we all cope with it in different ways and I believe all people with lupus are pretty in tuned with their bodies, At the end of the day,we just need to be here for each other…you take care friend and feel free to vent to me any time,I go over the edge every now and again,you’ll read it for yourself sometime…lol
Mugs…I’ll take the wine and the mousse!!! Mmmm yummy!
I’ve heard someone else refer to steroids as their “frenemy”. I think that’s a great one too. They’re like a miracle drug at times. Like when I’m in agony and feel like I have the flu and just can’t function, think straight etc…he increases them and BAM… I’m human again! I got weighed the other day at a new primary dr visit. I’m the fattest I’ve ever been in my life. I don’t want to go anywhere because I don’t want to bump into someone I haven’t seen in awhile. I know what they’re thinking…“dam she got fat…what happened?” I end up telling everyone I’m on meds because it’s like “I’m not just a fat pig sitting home stuffing my face and being lazy…I’m sick”.
I too need another back surgery which I do not want. That was before the steroids so now I’m sure an MRI would look much worse.
I guess it’s just a choice of picking the lesser of 2 evils. If I don’t take them, I can just sit on the couch and be miserable in pain. I wouldn’t have the strength to get up and go to the barn with my daughter and watch her ride. So …I take them, I get out of the house and pray today will be better than yesterday.