Feeling worse on new treatment days/TIRED OF TRYING NEW MEDS!/Just a missive rant

General
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Due to some terrible flares in late summer, I started on Acthar Gel injections (1 IM twice a week) about 3 1/2 weeks ago. by my rheumatologist. I give them to myself without a problem. So remember this---if I can (as needle phobic as I am) do this you can too, if it is ever required.

I went through a lengthy process for assistance approval from the Chronic Disease Fund (good to know about CDF if your funds are limited). BUT, on days I take the shot and one half to a day afterwards I feel terrible. So, I'm better for a day AFTER the immediate effects of the shot are worn off and then the cycle starts again. Reminds me of my sister taking all the chemo for ovarian cancer for ten years. It was torturous to watch her struggle with all the new drugs and side effects until she passed in 2010.

I know Acthar injections have less effect on the pituitary/adrenals and stomach, which is good. But, just like with Prednisone, I am ravenously hungry, my hair is falling out (yes, already), I am bruising, my mood is "edgy" (i.e. meaner than a snake), have a nasty rash on my face, and I have already picked up a dry cough, and my brain is so fuzzy---I am doing things like mixing up appointment dates when they are written down on TWO calendars. I can't take a flu shot because last year I had a reaction that my primary care doctor (whose office gave the shot) said looked like Guillain-Barre Syndrome. When I got out of bed, my knees buckled and I feel to the floor---the day after the shot.

Question---(one that the drug manufacturer pharmacist assigned to me could not answer nor my doctor's office). Is there a comparison of Acthar Injections to Prednisone pills as far as dosage? In other words: Is 1ML of Acthar equivalent to let's say 40 mg of Prednisome? Maybe they are drugs which cannot be compared.

After all this babbling I have a point here! I am ready to give up on all the "new" treatments which make me feel worse=don't work. Benlysta is one I tried when it first came out several years ago. After three months of infusions, I was feeling worse so my rheumatologist took me off. Now I learn that research has shown it takes 6-12 months of Benlysta infusions to see if it really does work!

I'm 61 and although I wasn't "formally" diagnosed until 2006 (54), I know I had Lupus from my late 30's at least....repeated infections, surgeries all over my body, thyroid disease which went undiagnosed for many years, exhaustion that required me to get up 3 hours early to drink 2 pots of coffee to be able to get dressed and go to my job, plus my maternal aunt died of Lupus kidney complication in her 50's. Even as I child I remember being sick constantly. I finally just collapsed after diagnosis....applied for disability and was turned down then approved.

I know it's all about how much energy you have to fight this lupus affliction, but my reserve is gone, gone, gone. Formally a social person, since I had to quit work about five years ago, I have become more solitary as I have come to understand that others DON'T understand. I have a sweet, wonderful boyfriend who is quiet and likes a simple routine (we play group trivia at restaurants, go to the nearby dog park, the used book store to browse, watch movies and special programming at home, go to concerts when we can afford it, etc.) I have to take prescription Adderall to be able to do anything special. He is what keeps me going.

Honestly, my quality of life has sucked for more years than not. So now I am thinking why bother trying new things every few years which put me "through the ringer." Does anyone else have comments about this feeling? Any comments at all? I'm supposed to be a moderator but it is now ME who needs help! LupanCatwoman

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Cat? Because you are a moderator does not mean you don't need support as well! No shame in asking for it.

My personal take on treatments is if your body doesn't respond well, why put anything in it that isn't helpful? I don't say a complete no to western medicine, but I feel we need a balance between a healthy lifestyle including nutrition, any "alternative" treatments that are helpful, and standard treatments if needed. It's sort of a pick the best of all opportunities viewpoint, though many might disagree with me.

We also as people living with chronic illness have to remember what others can do, we may have to find a different course while navigating life. Struggling with quality of life issues isn't uncommon. I'm right there with you, and fighting the loss of mobility advancing quickly.

Our own attitudes, amount of faith, support networks, and finding our balance are what makes life better, or miserable. We don't have to measure up to anyone else's standards. There is also this as a thought: everything we go through holds a lesson. Some of us may need more lessons, or our spirits are crying out to learn and grow. No matter what happens, grasp the lesson and carry it forward with us. It will come in handy at some point along our journey.

You will hopefully find comfort and caring in what I've said, and forgive me if it's a bit disorganized. We all have challenging days, and then easier days. Today was a challenging day for me. lease remember you are never alone, and human so need others like everyone else. One thing you said struck a chord, about fighting lupus. I'm beginning to really get it is about living our best while dealing with lupus, and everything else.

So glad you posted!

warm hugs, and an ear whenever you need it,

Louise (formerly ohsoperplexed)

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Thank you for posting this. I’m currently laying in a hospital bed feeling exactly what you wrote but feeling too tired to articulate it. Thank you. Thank you. Thank you. I’m so tired… I have degos. A rare form with a low treatment and survival rate. I finally just told my mom and dad. It’s not looking good. But I’m going to fight as long as there are people next to me fighting too. ANd my daughter. My sweet daughter… But I’m tired.

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We are here to help each other. Thanks for sharing this discussion and voicing what many others may be feeling but are reluctant to post.

Hugs and healing prayers

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Keep talking and posting…community is the answer…and god…he knows this and will help us…stay strong in his love…keep talking…we need it…doesn’t matter that we are broken…we are loved…I love you all…talk soon

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I am so glad you have a boyfriend who enjoys the things you like to do. He must understand how you feel.

I'm sorry you feel so bad, but don't give up. We're here for you.

Cindy

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First of all, I have not been this bad but my heart and soul goes out to you and all others that are suffering so much. I hurt but organ involvement of any kind is not there. You are a moderator but that doesn't mean you have to suffer without venting. By your venting you have let the rest of us relate and help us grow in our desire to help you and others. I have a grown foster daughter who has been on benlysta for over a year and she said that at about the year mark is when she started feeling better. She is quite active and is an artist. She is about 30 years old. Also, we all react differently to each treatment too It is too bad that no one told you how long the treatment took before you started feeling better. I went on the Glaxo website and read about it because my rheumy knew nothing hardly. I am glad I did because there were several factors as to why I should not use it. I am sending prayers, gentle hugs and healing thoughts your way. Reet

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Jen, I had to look up Degos and OMG I am so sorry. Please know I a praying for you and sending healing thoughts.

Gentle hugs, Reet

Jen said:

Thank you for posting this. I'm currently laying in a hospital bed feeling exactly what you wrote but feeling too tired to articulate it. Thank you. Thank you. Thank you. I'm so tired... I have degos. A rare form with a low treatment and survival rate. I finally just told my mom and dad. It's not looking good. But I'm going to fight as long as there are people next to me fighting too. ANd my daughter. My sweet daughter... But I'm tired.
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Thank you for sharing. I am 58 and have been diagnosed since I was 32. I am in such a bad flare. Rheumatologist has upped my Lyrica from 25mg once a day to 75mg twice a day. I have now been on the new dosage for a week and I feel like I am getting worse.

It is so hard to get up and go to work. I am getting my work done, but it is so hard. I am a wife, mother and grandmother, but I am unable to enjoy my life.

GrammieKate

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I know exactly how you feel. I’ve been fighting this since I was 7. Dx’d with Sjogren’s at 11, then kept adding dx’s and was dx’d with lupus in my 20’s. I’m 43 now and I am just so tired of the drugs, the pain, the daily struggle to get out of bed. I had a rituxan infusion last week and have been flat on my back ever since. I went to the rituxan site and sure enough, everything I’ve been going through this past week is related to the rituxan, aside from the kidney stone. When I emailed my doc and told him that the site said to let him know because they were listed as serious side effects, he said he didn’t think it was from the rituxan. Grrrrr, he blows me off whenever I try to be a partner in my care. I think I know what is abnormal for my body. I have the 2nd infusion next week and am dreading it. My last round of this went fine, it gave me about 3 months of relief. Cytoxan worked the best but this rheumy won’t use it because it can cause bladder cancer. So even though my bladder scoped out fine, I’m stuck using a second rate med because he won’t rx it. I’m thinking of changing rheumatologists because he doesn’t listen. I don’t/can’t work but keep getting rejected for disability and I have 3 kids to be mom to. I can’t even clean my house. Bleh, sorry to rant but your post struck a nerve…lol I hope you explore more meds. I refuse to take prednisone because my bones are already showing loss of density from all the years of use. There has to be better meds for all of us.
Hugs, Annemarie