HealingWell
Search Close Search
☰

Made It Through First Infusion

Support Forums
>
Chronic Pain
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/17/2012 3:27 AM (GMT 0)
Hi, well I made it through my first infusion of Benylsta. It a new medication for my Lupus. I am still very nervous about the side effects.

My hubby and I arrived at 9am and didn't leave until 5pm tonight. I had some issues with a reaction to the drug I ended up getting 75mg of Benadryl IV. I feel like I have the flu right now, loads of body aches and just wiped out. Will have my second dose on the 29th.

I am very worried about the depression/suicidal increase in thought. Caused by this medication. My PCP upped my cymblata to 60mg. She said she'd add Ativan if needed. As far a my pain goes it's at the top of the charts, i can't get my steroid injections in my back until Dec.

With all my health issues, I am being handled with kid gloves. My blood is currently to thin, my labs showed I will most likely need a blood transfusion by the end of the week. The rep from the drug company that makes Benylsta gave me an information book and it repeated that I could develope cancer from taking this drug, over and over again.

I already have MDS, I just feel so pushed into a box. If I were an animal I would have been put down long ago. Also, I upset hubby this past Saturday night, I forgot to put my VPAP machine on and he came to bed and found me slipping into my "death rattle" as he calls it. So he is thinking he won't go home for Thanksgiving, even tho the whole family, except for me, our daughter, and now him won't be there. I am such a burden and the in-laws just don't get it.

I feel guilty for his feeling that he can't leave me. He hasn't seen his parents in over a year now, they are in their 70's. His sister is a Dr and she tells him I'm an addict because I'm on pain killers. Her husband is a surgeon, don't know his view cause I've never met him. The sister who is a doc frowns on pain killers, she is practicing w/o a DEA license to prescribe pain meds. She ALWAYS makes comments to me about drug seekers, I get offended.

His other sister is a nurse and dates a Dr. and yet they all are pressuring us to travel together or for him to leave me with our daughter. I just don't understand why they won't acknowledge I'm so sick. My hubby of almost 28 years told me today, "you are not going to die on my watch, and it's not fair to put that responsibility on our almost 20 yr old daughter". So, I lay here in pain, feeling guilt ridden, and just feel like giving up. Any suggestions?

Hugs,
Barbara
Posted 10/17/2012 4:45 AM (GMT 0)
Hi Barbara,

Yes I have a suggestion, is there anyway at all you could go with your husband? I know it would be difficult, but from what you wrote, I would love to see you go with him, and if your sister inlaw, says anything to you, just tell what kind of doctor you think she really is! I tell you your post infuriated me! I am so sorry that your inlaws feel the way they do! It sounds like your husband is a very good man and loves you very much. But if you could in anyway go with him, please try and do so, if your sister inlaw doesn't believe in pain meds, how can she understand what pain is? and how it affects people? Does she not have any compassion for her patients?  You should ask her? I know there are people and doctors with that attitude, and to be honest it amazes me that they are even in medicine, and want to treat people!  Anyway you post struck a nerve with me, I do wish you well and hope that you can figure this out. Just don't give up, keep your faith, and don't feel guilty, I am sure you husband does not want you to feel that way. Just do what you can. I think I would try to go, if for no other reason than to needle and spite, your inlaws! or at least your "Doctor" sister inlaw!

 

It is easy to not put on your VPAP mask, I know all about sleep apnea, I have complex sleep apnea, but I also know when your not feeling good and are tired it is easy just not to use it. You sound like you know the importance of it, but I certainly understand your husband concern. It just shows how much he cares about you!  Good Luck Barbara!

 

 

White Beard

 

 

Posted 10/17/2012 9:09 AM (GMT 0)
Hi Barbara,

I agree with WhiteBeard completely. If there is any way you can safely travel (and NOT stay in the same
home with the in-laws), then it would certainly be a nice gift to your husband. He seems like such a good man and obviously loves you very much. He is willing to give up his birth family to stay with you and keep you safe. If you could (without making yourself overly sick) give him the chance to see them, I believe he may really appreciate you thinking of him during the holidays. He doesn't really care what this so called Dr sister thinks.....and perhaps he would like to prove her insane ramblings wrong.

I wish you all the best my friend. You have a great deal of serious medical conditions on your plate. Don't loose the hope that keeps us going. Perhaps this medication wil be the "one" that turns it all around for you.
Posted 10/17/2012 12:12 PM (GMT 0)
Oh Barbara, I really feel for you. You are dealing with so much just now, I guess in your mind Thanksgiving is the last thing you want to be thinking about just now. Although I live in the UK I know just how much Thanksgiving means to you all in the US.

I can understand why you might not want to go, I certainly would hate the thought of spending time with someone who though I was an addict. Does she pratise general medicine, I would hate to be her patient with views like that. I always feel, rightly or wrongly!!! that someone like that should come down with some bad backache or sciatica and then see what her views re pain meds were then!!! On the other hand I can understand why you feel guilty about your husband not seeing his parents. Would it be possible for them to spend a short holiday with you.

My husband hadn't seen his parents since Christmas because he wouldn't leave me and I wasn't able to sit in the car to go visit them. I felt very guilty but nothing I said would convince him otherwise. That's what love is, and it is obvious just how much he cares. We know just how ill you are Barbara, and I would not be risking your health for anyone

Why not delay the decision, just to see how you are nearer the time. If this infusion works and you get another blood transfusion, you may feel better and want to travel. But I don't think at present you are able to travel, you would have too feel a whole lot better. There is nothing worse than being away from home and feeling bad. There is nowhere like home then.

Please take care Barbara, I really hope that your doctors can get to the root of your problems and begin making some progress in making you well again.

((((Hugs))))

Jane
Posted 10/17/2012 1:06 PM (GMT 0)
Barbara,

Wow, that infusion sounded like a major ordeal in itself, couldn't imagine going through that. As far as the mental/emotional side effects that could happen, doesn't mean it will happen. And it sounds like your doctor is on top of that possibility.

Gee, sounds like you have some lovely relatives there. If that is their real feelings and attitude about you and your obviously severe medical issues, I will be blunt, who needs them? There is a reason why i have a brother that only lives 6 miles from me, that it's rare if I see or speak to him once a year. I just don't put up with things like that.

Yeah, if you had a miracle way to go on the trip and stay elsewhere, it would be a good "present" for your husband. But on the other hand, if you are too fragile to do so, he would have to understand that, and it sounds like he does.

You are not a "burden", and you shouldn't think that you are. For those that think you are, its their problem. For those that think you are a drug seeker, its their problem. You have so much on your plate, you are dealing with so many serious issues. It's ok for you to think of yourseslf first, nothing wrong with that.

My best to you, hoping for better days and less pain for you.

Gentle hugs,

David in SC
Posted 10/17/2012 1:08 PM (GMT 0)
 

    ..morning Barb!....I'm so sorry that you have family members acting like this, and its obvoius that you are in no shape to travel given your reports here. Bottom line is...that you have to take care of you first, and how they cannot see your health issues in mind blowing to me. At least your husband is doing the right thing here, and sticking by your side.

      I so hope you will get to feeling better soon, and I feel badly for you,

  SE

Posted 10/17/2012 2:19 PM (GMT 0)
Hi Barbara, so sorry you are having to go thru all ths family stuff. Just not fair is it. I've had some in laws say some pretty nasty things to me as well and i just dropped them out of my life. Just don't need it.

Remember that you are important and it is you who suffers and not them. If it's going to make you feel sicker then I say, don't go. In the long run it is you who wil suffer and not them. If your husband does go, is there someone who an come and stay with you and your daughter?

Listen to your heart Barbara.

Take care
Suzane
Posted 10/17/2012 11:00 PM (GMT 0)
Barbara

So sorry to hear about the family. I agree with Suzanne, see if someone can stay with you and your daughter if your husband elects to go .

I will pray for you Barbara

Hang in there
Betsey
Posted 10/18/2012 12:22 AM (GMT 0)
Barbara,
For now just take things slowly until you know how this infusion works for you. Then make a goal to decide things on November 10th, but wait for now to see what results you get with this new infusion, keep you important, first and formost. Luv ya hun and sending Prayers...
Posted 10/18/2012 4:55 PM (GMT 0)
Hi Barbara, I just wanted to pop on and tell you I hope the Benylsta works. Do you know if the first infusion will make a noticeable improvement or will it take several infusions? I also understand what you are going through with your family because you are trying the drug. What they need to remember is you cannot live your life on "what if". You should be ale to try any medication that may bring some quality life back to you. The family needs to understand that there is no guarantee that none of us will be here tomorrow. We have to live for today.

I have crohns disease, went through an emergency surgery and am very lucky to be alive per my gi. He started me on Remicade infusions and boy it has the possible horrible side effects just like your Benylsta. My husband went to work one day & told one of the guys about Remicade and his daughter is a pharmacist. When she told her dad the possible side effects he said here tell this man about it because his wife just started this stuff. She told him the possibilities and then capped it off with if this was my wife I would not want her on this drug. Well, you can imagine what happened when he came home. But, its like I told him,I was tired of being sick, I was tired of being either in the hospital or ER every time I turned around. If this works for me then its worth it. I told him there was guarantee that I wouldn't get ran over & killed by a car either and that is how I have to look at things. So, I did Remicade infusions for 3 1/2 yrs, I built up antibodies to it and got really sick and the Remicade induced Lupus. So, then I have to be treated for Lupus. My gi switched me to Humira injections every 2 weeks and its got the very same possible side effects. Of course my husband is very unhappy too about the Humira because he has watched all the tv commercials about it. Bottom line, sometimes we have to take risks and if the medication helps us, its worth it.

You know you need to quit beating yourself up over your health problems,.Its not like you have done this to yourself or caused all of these problems. Your are putting a lot of guilt on yourself and it is over something you have no control over. I am putting up with auto-immune diseases on top of CP, I have to live it one day at a time,sometimes it feels like an hour at a time.

Take care....Susie
Posted 10/21/2012 6:08 AM (GMT 0)
Hey everyone:

Sorry I haven't posted sooner, this drug has totally knocked me flat on my rear end. I have spent everyday since Tuesday, feeling like I have been run over by a train.

I spent all of yesterday in bed sleeping. Wouldn't you know insomnia has now kicked in. It's almost 2AM EST and I am up posting, hubby says I'm being naughty for not coming to bed. So now I am in bed typing on the IPAD. Still not feeling sleepy.

My pain has been through the roof and I really don't know what to do about it. Earlier, I asked hubby to rub lotion on my back, and he said, "what's this on your back"? Well I couldn't see it in the mirror in the bathroom, so he took a digital photo.

It looks like I've got a lemon in the center of my back under the skin. At first I thought maybe it's a pocket of fat that has redistributed in my back, from all my steroid use. The more I look at the photo though, the more I think there's something seriously wrong there. If I can manage to sleep a bit tonight I may go to the ER and have it looked at in the AM.

Sorry, I'm making this so long, I'm just so SICK AND TIRED OF BEING SICK AND TIRED. I just feel like giving up and letting nature take its course and having my agony end.

As for my in laws and travel plans for Thanksgiving, well I have been told in no uncertain terms that, NO I CAN NOT TRAVEL, per Dr's orders. So now it's an issue of trying to talk hubby into going w/o me. Our daughter will be off on the Wednesday before Thanksgiving, and yes she can stay with me, while her Dad goes to his parents for the holiday.

That being said, she is only comfortable being left alone with me if I'm doing okay. The shape I am currently in she is AFRAID, to be left alone with me. She found me in June 2011, unresponsive and slowly dying before her very eyes. It has left a HUGE impact on her.

Hubby and I don't feel that it's fair to her to say, "well you stay and watch your Mom, and don't let her die while I'm gone". That's a major responsibility for a kid that isn't even 20 yet. So the jury is still out if hubby will go or not and if my in laws will be upset and blame me, if hubby doesn't go. I get my next infusion on the 29th of October so I guess we will do this one day at a time. Thanks for letting me vent.

Hugs,
Barbara
Posted 10/21/2012 5:07 PM (GMT 0)
Barbara if you go to ER today, please come back and tell us what you found out.....Susie
Posted 10/23/2012 2:29 AM (GMT 0)
Is the lump still around?
Posted 10/23/2012 3:04 AM (GMT 0)
Hey Susie and Lynn:

Thanks for asking about me. I haven't gone to the ER at all today. I just am so so wiped out, I just don't understand why. So yes, the lump is still there.

I have an appointment to see the Endocrinologist tomorrow. I will show it to him and if he feels it's something bad I will have him contact my PCP.

I really am struggling and don't know why. All I know is I'm fed up with it all. I just can't seem to ever get a break. My pain levels are sky high and I have tried everything.

Thanks for asking tho it does make me feel wanted and cared about. Hope you both are having a good night. Will give an update once I've seen the Dr tomorrow.

Hugs,
Barbara
Posted 10/23/2012 3:13 AM (GMT 0)
Prayers for you and I hope things go good and that your endocrin doc can give you some answers...posts after your visit, we will be thinking of you.
Posted 10/23/2012 3:45 AM (GMT 0)
Hey Chart:

Thanks for taking the time to respond. I appreciate it. How are things going you for? I have seen in your posts that they've put you thru he!! and back. I'm sorry that you need another Emg, I think you said. I hope it goes well and they figure out something.

How is your family doing. I believe your daughter should be a senior by now. They sure grow up quick, mine is a sophomore this year. She's hoping that we will allow another study of broad this year. I think she thinks there is a money tree out back LOL.

Anyway, hang in there and I hope they can help you soon.

Hugs,
Barbara
Posted 10/23/2012 3:55 AM (GMT 0)
Hi Barbara

 

That lump on your back sounds worrisome, Please keep us posted on how you are doing. You know when you got married it was for better or worse, I do not blame your husband a bit for wanting to stay with you and not go to his family over Thanksgiving! I am sure you might feel bad about that, but accept his giving heart with joy, you are indeed fortunate to have him. And I think for him to have you. So spend Thanksgiving together, and enjoy the holiday, as the family that you and your husband are! Don't have regrets for him, just accept and appreciate him for what he is to you!

 

White Beard

Posted 10/23/2012 4:26 AM (GMT 0)
Hey White Beard:

I will keep you updated on the lump, I will show the Dr tomorrow. I know I have a great hubby, he's stuck around and done things a lot of men wouldn't do for their wives.

He provides for me and our daughter, keeps a roof over my head, heat or a/c as needed, and food in my belly. He is a great guy, except he doesn't always express or provide the emotional support I need at times.

I know that his family is that way, and doing 20 plus years on active duty in the military, with combat camera, it's kinda hardened him a bit. I know deep down he loves me and worries about me. Tonight, is a prime example. I have felt so bad the past few days, I haven't had the strength to shower and wash my hair. He willingly gave me a shower and washed my hair.

He has had to wet/dry pack open wounds on me. I can puke all over him and he doesn't bat an eye. Because he's so good to me, is what makes me feel guilty, that he feels like he can't leave me. Both my parents are dead and I know how much I miss them. Hubby's parents are getting up there in age and I don't want him to have regrets that he didn't see them more.

I understand his concern about leaving me alone, and I understand that we can't put my safety and well being on our 19 yr old daughter. I just really hope I can improve enough in time for him to be able to join his family. I know I shouldn't let what others think bother me so much, but I just want everyone to be happy.

Thanks for reminding me that he's willing to stay with me and our daughter out of love. Hope you have a good night.

Hugs,
Barbara
Posted 10/23/2012 7:32 PM (GMT 0)
Barbara, From everything you have said about your husband, it sure sounds like loves you very much, and would do anything for you! You know he would not do all that stuff if he didn't want to, you said he was some what hardened from being a military combat photographer, well I am sure he had seen allot, and it does harden you to some extent. I spent my first eight years in the Air Force in photography and I know just from that experience how much one sees that most people don't.  It does harden and change you in one way, but also softens you in another! It just about sounds like he would make a good nurse! Anyway value and cherish what you have, and hopefully you will get better and in the future you can show him your love and appreciation in being able to do more stuff for and with him, ie going with him to see his family and such.

I do wish both of you well!

White Beard

Posted 10/24/2012 4:13 PM (GMT 0)
Hi Barbara, Just wondering how the appointment went. Update us when you feel up to it.

I wanted to ask, and please forgive me if I'm out of line, but would it be possible for his family to travel to you?

I'll be thinking and praying for you.
Posted 10/25/2012 4:30 AM (GMT 0)
Hi Barbara,
I am also concerned about the lump on your spine. Please let us know how you are doing. I was concerned about your cymbalta because it can cause suicidal thoughts. My PCP dc'd my cymbalta after I told him I wanted to beat my head against a wall. Regarding your sister in law, since she is giving free advice, give her some educational information from American Academy of Pain management. http://www.painmed.org/files/definitions-related-to-opioid-treatment-for-pain.pdf.
Posted 10/25/2012 8:44 PM (GMT 0)
Hi Barbara,

I was hoping you would update us. I'm worried about you. I hope you are feeling better and just taking some time to rest.

Please know we are thinking of you.
Posted 10/25/2012 9:39 PM (GMT 0)
How are you doing Barbara? Hope you're ok.

Suzane

Posted 10/25/2012 10:44 PM (GMT 0)
Hi sorry it's taken me so long to post, I have been so so tired, all I seem to do is sleep. My appointment on Tuesday was canceled. So I haven't had my lump looked at yet. I will see my cardiologist tomorrow at 12:30. I will show it to him then.

I was thinking that part of why I may feel so tired is that my Dr doubled my dose of cymblata. I had a very hard time adjusting to 30mg before. At least that's what I am hoping it is.

I will get my next infusion of Benylsta on Monday. They say the second dose is the hardest one. I hope that's not the case. AuroraBlue, thanks for the info on cymblata, but actually I've done well with it. It's actually my Benylsta that has my Drs worried about. In the clinical trials of this drug 6 people committed suicide from this medication. I have to try this medication for at least 6 months. So my hubby and daughter are aware of what to watch for.

On a final note it was asked if the family could come to me. Well, there are 7 airplane tickets bought to go to my mother and father inlaws home already. I really don't have a issue of not being there. What does effect me, is my hubby not wanting to leave me and joining his family. Even, if I were well enough I wouldn't be up to having 12 people in my 3 bedroom home.

Even though we have been married almost 28 years, I am not close to hubby's family. My father passed away in May 2011, they never sent me a sympathy card or even called me. So, for me I don't mind not joining in, I just don't like the feeling that I'm keeping hubby away from his parents.

Hugs,
Barbara
Posted 10/25/2012 11:39 PM (GMT 0)
Barbara,
It's also your husbands desire to be with you, his family he can probably see anytime, so do not feel guilty about his decision, instead just take this year as a pass for the holidays and let everyone know you hope to make it next year, and that will have to due...no excuses just the simple truth and in my opinion they should be more caring and respectiful of you...I don't make it up to Michigan for the holidays due to weather related illness, I have asthma and cold air triggers it, so we go and visit in the Summers when we can....People should understand the same about you...We all do what we have to and nothing more or less is expected. You are a great and good person, remember that and don't worry about the Holidays...
Jasmine is doing good thanks for asking, she graduates Dec 2013.
Many Prayers on your 2nd infusion and keep us posted as we do truly care.
Prayers to you hun and know I do care and try not to worry too much over this family situation and holidays, things will work out...
✚ New Topic ✚ Reply
12