Remicade

Mani
0 Recommendations

Hi everyone,

I am hoping this email finds all of you having a good day....

As for me, not good today. Went to see my rhuematologist on Friday, the 7 months of 40 mg (tappered down to 0) essentially did nothing for me except leave me with 50 additonal pounds I didn't need or want!!!. I told her about my falling spells, weakness and severe pain in my legs and she mentioned avascular necrosis...."great I thought to myself, just what I needed". My husband is ready to "look outside our marriage" he says half jokingly because I just cant stand any physical contact and since the Prednisone the libido is totally gone. I know I love him, he is my high school sweetheart and we have two gorgeous teenage boys, but the thought of lovemaking is totally not on my "top ten" list for the day. I have been so depressed since coming of the Prednisone and trying to maintain a normal life with a demanding supervisory job, two active teenage boys a home and a husband. I wake up in pain and go to bed in pain and I hate it!!!!

Anyways, my rhuematologist sent me for x-rays of both knees, blood work and is booking an MRI scan for me for rule out asvascular necrosis. She also prescribed a new anti-inflammatory that just came out on the market (Prestix) not sure of the spelling.

She wants me to try Remicade because she just came back from a rheumatological conference and there was a doctor there who has had a lot of success with sarcoidosis and Remicade.

Can any one shed some light on this.

Thanks,

Mani

17 replies

neki

Hi Mani,

I was given remicade via I.V infusion, I had four infusions which i recieve every eight weeks in addition to 10mg of prednisone. I did very well with it. I regained my energy and most of the symptoms went away. It was shortlived because i had a severe anaphylactic reaction when i went for the fifth infusion so i had to stop.That is me, it could be differrent with you.

goodluck

Neki

anybuddyhere

Mani,
I saw your picture. Your husband must be something to behold if he thinks he can find something better out side of marriage. You are lookin' good girl for a mom of teenage boys.
I have been married for 50 years so I guess that isn't a big problem for us. I still considered myself lucky that he has Diabetes so he stopped before me.
It is very true that you can find everything you need without physical sex. I don't know if I thought that was true when I was your age. Someone suggested that you set aside a time where you could put the focus on him. I remember when I was working (my last job was a Director of Nursing) I was on call 24/7 and so we were lucky to have dinner together. I would suggest that since you are the one who isn't up to par that he take the lead and make it all about you. If you don't have to expend so much energy then you might be able to be there for him.
I don't know anything about Remicade. I am just about too scared to try any of the medications they prescribe.
I do wish you the very best.
Barb

Dawn1973

Hi Mani
Have you told your Hubby how much his comment about "looking outside the marriage" hurts you? I have to agree with Barb. I saw your picture. You are beautiful. Do not let anyone make you feel bad about yourself, or about having this illness.
I think those we care about, since they are not going through this themselves can sometimes be, no offense to them, my fiance included, Really Ignorant!! They have no idea how it feels to wake up from a full night of sleep and still feel exhausted, or be full of aches or pains or have difficulty breathing. They see us, and lets face it, most of us really do not look very sick even though on the inside our bodies can be completely out of control, so they think that we must be exaggerating. I know exactly how you feel.
Also, some of them just find it easier not to really try to imagine how we feel as they feel helpless because they can't fix us or make us better, so some just bury their heads in the sand and pretend it does not exist and then set unrealistic expectations on us.
My fiance and I had this very argument again the other night. I have been pretty sick lately. My blood calcium levels have been too high lately and I have been nauseated. I have lost 10 lbs in 2 weeks without trying though it does not look like it as I am bloated. My joints all ache especially my hips and this week, even the smallest activity like carrying a stupid laundry basket up the stairs makes my heart rate go crazy. I sleep alot these days as i am exhausted. That and I am still recovering from the 2 month round of dealing with the dead bone in my mouth. But I still look normal. So to him, how can I be that sick???? I finally got so mad at him the other night. I told him I was tired of him making me feel bad about feeling bad. I told him I hated to even go to the doctors because he would grumble about it. I told him I was tired of trying my best to please him even though I felt like something the cat dragged in just to have him complain more. Guess what? It worked. The next morning, he went to work and god forbid, I was in the shower and he called and I did not hear the phone ring...He started calling my cell phone and sending text messages wondering if I was ok. He was in a panic that something was wrong. When I called him back he was in a tizzy. LOL!! He demanded that I see the doctor that day. (which I should have anyways because of the crazy heart rate, so I did) But last night, I even got a back rub!!! Sometimes you have to tell them what is on YOUR mind for a change! He obviously wants to be with you as he is still there. Remind him of who you are and why he fell in love with you in the first place. It was not only about love making in the traditional sense.
I don't know anything about Remicade, but I have problems with both of my knees and when they get too bad I get Cortizine shots in them. It generally has them feeling almost as good as new by the next day. ask your rheumatologist about this. I like this better than pills as it is a local procedure as opposed to swallowing pills that can later effect other areas in your body.(and many of us take enough meds already, so why add more). Cortizone can only be done occasionally, but I find it works for extended periods of time and I do not usually find myself in pain before I can get another one. Also, Have you thought about accupuncture??? When I was pregnant with my 6 yr old daughter, my sciatic nerve was so bad I could barely get out of bed, and being pregnant all I could take was tylenol which did absoloutely nothing. I went to the accupuncturist a few times and have never had another problem and the procedure itself was painless. I would highly recommend this to anyone! Just make sure the accupuncturist is accredited and licensed. anyone can hang a sign on the door and claim that they are one. Make sure you see their license posted clearly on the wall.
Most important!!! Remember that you are beautiful. Do not let anyone make you feel bad. you are doing a great job working and raising your boys and providing for your family. You are entitled to have bad days along with the good. You are entitled to understanding! We are all here for you.
Good Luck and Be Well
Dawn

Mani

Dawn, Barb and Neki,

Thanks so much for your comments, you are all so kind....I don't want to give the wrong impression of my husband, but after reading my post, I figure I kind of did!.

My husband is supportive, but after 3 months of no intimacy, he is becoming frustrated, and I do understand. He is there for me with every other aspect of live, helping me clean, gardening, telling me to relax when I don't feel well. He is amazing, gorgeous and supportive. My life with him has been good, and he is everything I ever wanted in a man. That is why it makes it even more difficult for me not to have the desire to be intimate. I don't feel attractive and sarcoidosis is getting the best of my moods these days, thanks for the comments though, you are all so sweet. I am just waiting for approval on the Remicade and then will probably follow through with the treatment.

Hoping this email finds everyone having a fantastic day and that tomorrow will be a better day for me.

Mani

shelldonovan

Hi-

I am a Biochemist that works with Remicade. Currently the latest warning may not warrent taking the added risks. Also, I am not sure if there are indications for Remicade in treating sarcoid yet. However, you could try treating with Humira. It has been recommended to me for may illness and I believe it also has indications for treating sarcoid and no new warnings and it has been around longer than Remicade. In addition, I do not think Humira it is made using animal derived raw materials and some people have issues with that. I have not tried Humira because I have small children in day care and I do not think the severity of my ailments warrent the potential for me to catch every illness they may bring home. So far preds have been all I need. Humira is also self administered injectable and will not require you to have to get IV profusions. It is also well tollerated in most patients.

SharonLauger

On the prednisone I gained a hundred pounds, then had wt. loss surgery. Still have stretch marks, etc. In fact my body looked like a peppermint stick (a really thick peppermint stick!) for awhile. Maybe someday I will get some fix-me-up surgery! Anyway, I just want to encourage you about intimacy in your marriage. My good friend said that sometimes the roots grow deeper in a relationship and during these kinds of times, they can. My husband and I worked our way through it in ways that were creative and unique for us. I will say he is the soul of patience! and that he truly loves me. Like your husband Mani he does so much in supporting me and keeping our home running. This last weekend I read a great book, Men Are Easy, which talked about designing your own relationship. I thought that was a good message, and Lynn Rasmussen the author spurred a lot of creativity. If your guy is like mine, he likes creativity. But first I need rest and pain meds, etc. before any creative endeavor if you get my drift, and my guy gets that too.
All the best and take care,
Sharon

P.S. You might need some positive reflection on body image, and generally how to love and nurture your body. If you can't love your own body, it is hard to let someone else love it. I know I needed counselling for this.

Cathy5

Hi, I have had 3 infusions of Remicade. I had a flare up with the sarc. last Sept. which started me on Prednisone 40 mg. It seems as though I have had more problems since being on the steriods then anything. I finally went down to 5 mg. But since the beginning of April I have been having hives all over especially around my eyes. Plus deep chest pain. I went in for my 4th infusion and they would not give it to me and sent me to the ER. So back up on the steriods and off to an allergist. No one can explain what is happening which makes me so depressed. The steriods affect my moods terribly. I had hoped that the Remicade would be an answer but I do not know. If anyone has any answer or similar situations with the hives please give me any feedback you can. I can relate to the marriage problems also. I feel as though I will loose my husband. I wonder if it is me being paroinid. This disease is like a curse. No one can figure it out.

Dawn1973

Mani
Sorry if you took any offense to previous letter. I just feel that it is important that hubby knows that you do feel bad by what he says. I'm glad he helps you out and does things for you, as that is important, but right now it sounds like you need some help with your self esteem as we all sometimes do, and a comment like that won't work. Perhaps you guys need to have a night to get reaquainted with each other? A nice evening out, just the two of you? He sounds as though he cares for you very much, and perhaps did not know how much the comment hurt. Perhaps you should treat yourself to a relaxing day at a spa. Get your hair and nails done, buy a pretty new dress, put on some make up and the two of you go do something you both like to do together.
If you have now stopped the prednisone the extra 50 lbs you are worrying about should begin to go away. If the pic you have posted is you currently, you really do not have to worry. The most important thing is that you are beautiful inside too. (I know it is hard to feel that way right now, we have all been there).
Most importantly- be sure to talk to hubby and let him know what you are feeling. Let him know that you are working through it and that you do appreciate his support and let him know how much he does mean to you. Remind him that he is still very attractive to you and that you still love him and need him, but you are having a rough time right now. I find that communication does make a big difference. When I try to keep quiet around my fiance things always tend to go down hill. It usually takes a blow up to get things back on track so I guess keeping communication open instead of waiting and blowing up is probably the best way to go.
Perhaps it is time to talk to your doc about depression? Many of us with sarcoid have depression to go along with it. It is nothing to be ashamed of. Face it, we have a lot to deal with on top of the stress of every day life, and it can cause some depression and "get the best of our moods". There are anti-depressants out there with very low instances of sexual side effects as well, and that would be important to discuss with your doc as you would not want something to make you feel even less like being intimate. I take Prozac 20 mg daily and it works great for me. gives me the extra boost I need to get past the rough spots. It has made a huge difference for me.
I hope you start feeling better soon.
Be Well and keep us posted about the Remicade.
Dawn

Mani

Cathy, so sorry to hear you have been having a tough time with your flare-up.

I too am very scared about hurting my husband. I know how much he loves me and that he would have to be at his wits end to leave me or go outside our marriage, my fear is pushing him so far that he would.!

As women we want to be everything....Mom, wife/lover, sister, friend, great boss, great worker, but the reality of the situation is that when you are dealing with a chronic illness with an outside appearance of "looking great", we take too much on and people like our loved ones forget. Your not being paranoid, I think we all go through this, when I first joined this site, I was positive, determined to not let this disease get the best of me, and now....I found myself, down, overwhelmed and discouraged. I'm a trooper though and you are too, we will all be alright I hope and pray....

Mani

Brenay

Hi Mani,

Sorry for not answering you sooner, but I could not remember my password. Those of us with Sarcoid seem to forget and misplace things. Anyway:) I have been on Remicade for a couple of years and wanted you to know that it took me two years before I stablized with the inflammation of my body. I have one organ under control and now it keeps my eyes and joints under control. Without it I would not be able to move. It may work faster for you. My doctor gives me benadryal 50mgs 30 minutes before infustion for reactions. I take it every six weeks. Now after about a week of resting after I take it I am good to go for about four weeks then I can tell it is time for the infusion. I am also on Medrol which is a steriod, which works better for me then straight prednisone. I do not know why, but my mood swings and aggressiveness:) are not as bad. Hang in there. It is going to get better.
Brenda

julzcoop

Hi Brenda!

I'm interested in the Medrol... do you take it by mouth or is it an injection? I'm currently on 20mg of Prednisone daily and I'm not sure it's working. However, I did get two local injections of Medrol which seemed to help those sites by the next day. I wonder if switching to Medrol would be more helpful for me as well. Please let me know how it is taken. Thanks!
Julz

Brenay

Hi Julz,

I take it by mouth 4mg twice a day.

Take care.

Brenda

julzcoop

Hi Brenda,

Thanks for the info! I asked my pulmonologist about the Medrol and he told me that he usually only uses it with patients that have to be on it for a very long time. He's still hoping that he can get me off the prednisone, but said that if we find that I'm one of those people who has to be on it indefinately that we could try it. Thanks again!
Julz

Cathy5

Hi Mani, Sorry it has taken me so long to reply. Reading from others from this site has helped me at least feel as though it is not in my head. I am just getting so depressed. I went through all the effects from coming off Prednisone only to be back on it very quickly. It really messes with my head. I get paronoid, anzxious, irritable and depressed. I have been to every kind of doctor there is and still no better. I can't stop the hives around the eyes and the vision problem. And all day I have chest pain.They won't do the Remicade again until the hives are under control. I am on 15 mg. of prednisone, clarinex, zyrtec, prevacid, ambien, vytorin. I can't handle having to go up on the steriods again.. I went to an allergist who did alot of blood work. He might try me on Doxepin ( I can't spell). It is an antidepressant but has helped with hives. I know what this disease does to your mind and body. I understand what you say about us being women who feel we have to take care of everything and feel like a failure when we can't. I pray we all feel better soon. This is a living hell...Thanks for responding to me....Cathy

Gypsy

I was diagnosed with sarcoid in June 04.
After two years it seemed to go away. Then like so many of us, it came back with a vengence!!!
I was deep in despair. It was not only back, but the disease now spread to my lungs, lymph nodes, spleen, liver, sinuses, bones and skin. ( The sarcoid decided to reside in my insufficency fractures of my pelvis (from the steroids!) The docs were shaking their heads and looking away from me while they all said, "I'm sorry".

Now I am not a patient person and have an inquisitive mind. I could not believe that this would beat me. But I was also scared. I had a team of docs now - pulmonologist, rhuematologist, hematologist-oncologist, my PCP, cardiologist, general surgeon. The rhuematologist had just returned from a Fall meeting where the primary topic was the use of Remicade for treating sarcoid. Remicade had already been found to help in rhuematoid arthritis and chrohn's disease (which also has granulomas). Thoracic surgeons were taking Remicade a step farther and trying it successfully on sarcoid pts.

I felt like a guinea pig, but I was a desparate woman! I figured, what could it hurt??? I started in January and just had my first CT scan. After three doses (1 dose, 2 weeks later the second dose, and the third dose 4weeks later and 6 weeks later). My scan shows that I am "significantly improved". My lungs are much better, my spleen is back to normal size and white blood cells are normal, my liver is better and my bones are healing! I have more stamina. I have returned to three days of work a week. (12 hour shifts!) I'm not running out of breath nearly as often. The lesions (OK, I only had two,but one was a positve biopsy!) are going away. My arm pits don't hurt from the lymph nodes anymore!

Remicade is very expensive, but my insurance agreed to pay 80%. It's worth checking out. The article about the conference is on the sarcoid buddies web site if your docs are curious. I will keep you all posted on my progress and in my prayers. Part of my reasonning for trying this was that maybe I could help someone else. I go for my next dose of Remeicade Friday and I couldn't be happier. I hope this a break through for all of us!

In case you're curious - I tolerate the Remicade well, as do most. I have yet to be sick, ( I've had a little nausea, but no vomiting and you can get Zofran ODT from your doctor and it relieves the nausea in a couple minutes. Really!) and my hair has not fallen out. I don't know what the long term effects may be, but I know that I am grateful for every moment I feel good. And I feel good!!!
Unlike the steroids which have made me lose hair on my head, grow hair on my face, develope insuffiecency fractures in my pelvis, given me mood swings, sleepless nights, short term memory loss, and steroid rage, and added to sizes to me, to name a few things.

I wish we knew that this was a cure, but I know it has helped me. As a nurse, I ask you please, don't settle. Keep looking for the right Doc and the right treatment for you. Keep your options open. Keep the Faith! I've been blessed and I pray for you, too!

This is the post I made under treatments. And I still stand by the Remicade. I feel so muxh better and instead of dreading tomorrow, I look forward to how much better I will feel.

I understand about your husband. It takes an effort on both parts to makes this work. I hated my husband for complainig that I did nothing around the house but sleep ( It was all I could do to work!!! ) and have him pull food away from me when the steroids were 60mg a day. I don't like the way I look or feel with the steroids, but I made an effort to watch what I eat (especially around him!) and to try and get more activity everyday. It is very hard when you fractures in you pelvis and spine from steroids! SEX???? OUCH!!!! But coming off the prednisone will cause some increase in pain and then you will feel better. Really!

And talk with your doctor more about Remicade. There will always be people who are allergic to medicines, all medicines. But chances are you will not be. Have your doc find you the info from that conference or try sarcoid buddies. I know I found it there and should have copied it!
And together with your doc make an informed decision. I had nothing to lose and I've already gained a lot!!!

God bless you!
Mary

Raena

Hi Mani,
I know how you feel...you are in pain...you just don't want to be touched or have to do anything
for anyone...you would rather just be left alone...BUT, on the other hand, you are feeling kind of
guilty for thinking these kind of thoughts...this is your husband, and you love this guy, and you
know that you are suppose to be a wife to him and do these type of things for him because
you love him! You get so depressed and troubled and you are just so sick...and he just doesn't
understand you or what is happening to you and then problems set in for both of you. I can
understand, but Mani, sit down with him, please, and as long as the two of you have been
married, just talk to him and explain what you are going through and explain the pain you are in,
and that you love him and that you are trying so hard, but you need his support and love and
you need HIM and for him to just understand for both of you. If he loves you, he will understand.
But you need to talk it out and explain things to him that you are going through...DON'T ever
leave him out in the cold. My husband and I got married young and we have been married
now for 38 years. We have had many ups and downs, and I too have felt like I have been unfair
to him by being so sick all of the time...my aneurysm surgery, my grandmal seizure, the
strokes, the ups and downs of my diabetes, and now finding out I have sarcoidosis. I feel like
he could do better with a healthier wife and be happier with one, but he set me straight on
that one.....! I don't know what I would do without Randy, and he is so supportive of me. I
too, get so angry at times and just don't want him around me and just want to be left alone,
but I think we all get that way when we are in pain and he knows when I need to be left alone
and when I need that type of just "silence." We know each other and can read each other,
so even though it may make him a little angry when I do things or say things...it's the same
with him when he does or says things....that's just normal. Please enjoy those boys and
that husband and know that we are all in the same boat together. All of us have those same
feelings and that is just normal. Just keep up the faith and pray and look to God for your
strength. And please don't ever give up on yourself or that husband of yours, okay?
I love you, Raena

julzcoop

Hi,
What type of warnings have come out about Remicade? I haven't seen any, so could you elaborate or provide me with a website with this information? My doc has just suggested starting Remicade and I want to weigh all the risks before going ahead and starting it. Thanks!
Take Care,
Julz

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