[Rene]

Hello everyone,
I haven't been on the boards in a long time. I have been way to sick. For the last past year my life has been going from the recliner to the bed and being in pain just about all the time and sleeping when the meds kick in. Sorry to sound so depressing but I am just telling it like it is! Before Christmas my Rhemy told me that because I constantly have to go up on steroids(prednsone,most of the time on 10mg daily.That i would die in 10 years!!She said I would call her and be in terrible pain in my back or somewhere and she would send me for xrays and my bones would be broke. She said I had to start on rutuxan(chemo therapy) well I got a flu and cold and had to take antibiotics for 2 weeks. So I had to wait until I got better first. I finally took the chemo/rutuxan by IV for 6 hours for a day and then two weeks later again. Came home was ok because to premed they give you 60mg to 80mg of medrol in the Iv and benidryl. I actually was somewhat better except for ecessive sweatin!!Then a week and a half later I had a terrible terrible flare and had to go up on steriods 20mg I was in TERRIBLE PAIN!! just about all over my body. Finally got better in a few days and now it is prementral time and I had to go up to 30mg of steriods and I am still in pain and taking muscle relaxers and pain meds.SO it looks like the chemo is not working.:worried:So I said that to say this IM SCARED REALLY SCARED!!!! I have no life,I'm always sick or in pain!!and I have a husband who was very helpful at first but has now turned on me!! He treats me like this is my fault because I am always sick. I have cried my eyes out and poured my heart at to him and he verbally attacks me He said he doesn't want to hear anything I have to say at all. He doesn't care!!He gets me food and takes my son to school and picks him up and just because I am always in the chair he's mad at me. I am at witts end and i'm trying to deal with the dieing part. The only releif I get is from prednisone and pain meds but I suffer so much. I've put on 100 pounds. my hair is falling out. my teeth are chipping. I don't want pity,but a little compassion would be nice. Thanks for letting me vent.

 

[dixy]

hi Rene

OMG u remind me of myself the other year trying out all the meds and them not working. I too felt to awful for words to say. I slept a couple of years of my life away.

I too felt rituximab didnt work the first time i had it. Can take up to 3 months or more to work.Ive just had my 4th lot now and things r improving. Also im anemic so have b 12 jabs not so nice but they do seem to work.

Think when u feel so rotten its hard to tell if its the meds or the lupus making u feel so bad.

Hang in there things will improve just takes time this madness of lupus is hard to take in at times.

Sorry to here about your hubbys support of you, think its hard for the men they like to be able to fix things. Just give him time.

wishing you well Hoping they have the right meds sorted for you soon.

Do you take calcium for your bones and alondronate to build your bones up

Take care

dixy

 

[pollianna]

Rene, you must be pertified. I am so sorry to read that you are coping with this all by yourself. Being a mum and facing the prospect of your life ending whilst being emotionally isolated is waay too much to cope with alone.....

Can you find some form of therapy to help you deal with all of this. You need someone who is not connected to your family to listen to you, to be there just for you. As far as the prognosis the doctor gave you, of course I have few words but would say it's imperative that you have less stress to allow the meds at least the chance to work. I read a wonderful book by Dr Bernie segall. Love, medicine and miracles. He is an oncologist but the book does speak to everyone with a potentially life limiting illness. If you can read it, it might bring you some comfort, maybe some strength...it helped me an awful lot

I would avoid all confrontation with your husband if possible. It doesn't matter what is going through his mind at the moment. He should take responsibility for his emotions at this moment in time . No matter how much you love him you must take this time to be as good to yourself as possible to try and beat this thing.

Sending you the very warmest of hugs :hug:

 

[richrich5555]

you're not whining!

I have had almost the same year as you have and what scares me is I have to take so much more of the pain meds than prescribed. how am i going to survive through that?

 

[Katharine]

Hello Rene,

I'm afraid I don't really know you or your history but I have some worries about what your rheumy has been saying

There are many people who have had to take higher doses of steroids for a longer time and no-one told them they were going to die I'm afraid that just leaves me speechless. My Mum was one of those people and it is true that she was told that her illness (dermatomyositis) was fatal but that was about 25 years ago and it was from a doc who knew nothing about her disease!!! For info, Mum is a healthy 71 years old despite having stayed on prednisolone to this day.

Obviously high doses of steroids are not ideal and when possible docs will avoid it but sometimes they do, very literally, save lives.

I don't know much about rituxan so I'll let others reply on that one.

I don't know your rheumy history but would very much like to have a second opinion on what's going on with you health-wise at this time.

As for hubby... I don't know what to say. I know how hard these things are on all of us. If he was so supportive in the past, I'd say that he is simply as frustrated and scared as you are but it's all coming out in the wrong way...?

huge hugs :grouphug2:
Katharine

 

[lazylegs]

Hi Rene,

I am sorry to hear you have not been well. Hopefully the Rituxan will turn that around. The first time I had Rituxan it took almost 4 months to kick in. Not knowing exactly when you had the infusions I will say don't give up hope yet. It doesn't work for everyone though. In the event Rituxan does not work there may be other medications you have not tried.

Hearing the news the doctor gave you must have set off a storm of emotions. I think you should try to get some counceling to help you through this emotional time. It wouldn't necessarily have to be a psychologist. An elder of your church or a chronic disease support group might be able to help also.

Personally I wouldn't accept the doctor's prediction without getting other opinions first. I suggest you try one of the university hospitals before giving up entirely. They are usually up on the latest developments.

Take care,
Lazylegs

 

[KarenM]

Hi Rene

I am aghast reading your posting. I am so very sorry you are having such a dreadful time. I have no advice save to say, like has been said, I am speechless at what I consider to be a dreadful bedside manner from your consultant, and despite you probably using all your strength just to breathe right now, for me, an absolute priority would be to find another consultant, who can and will manage your condition in a proactive and constructive manner.

Remember the boards here, one is never alone when we come here.

 

[Fairy]

Hiya,
I just wanted to respond to the 'death by steroids' bit - I've been on them for 8 years, and I'm never likely to get off them (also average out at about 10mg, sometimes a lot higher). I'm 26, and fully plan on living till 100 Are you taking any kind of calcium for your bones? If you're not, then you should be! Also ask for DEXA scans - they check the density of your bones, and if they're too thin there's drugs available that can actually reverse the osteoporosis.

I've also had rituximab/rituxan and it definately hasn't been a miracle cure for me - the first dose didn't seem to work at all. Second time round I seem to be doing a little better (although I haven't dropped the steroids this time), but my kidneys are still leaking protein etc etc. I'm keeping my fingers crossed for the new drugs that we keep hearing about, and just taking each day as it comes.

Basically there's still hope - I'd be seriously angry if my doctor had said that to me, and I'd be looking for a new one...

Take care :hehe:

 

[KarolH]

Everyone here has given you great advice so there is not much I can add.

I do think moving forward you need to find another doctor that is qualified to treat you and RUN AS FAST AS YOU CAN for treatment. In my humble opinion your present doctor is out of line.

A local support group may be very helpful not only for you but your husband as well. A lot can be learned in these group settings when you sit and listen well.

I am so sorry your having such a tough time but we are here for each other so come when you need to vent, talk, cry or just get support. We really understand what your going through.

Gentle hugs to you.:wink2::wink2::wink2:

 

[onetay]

I wanted to say that none of this is your fault and you can't help being sick. With that being said, I used to in home health care and have seen this more than once. Everyone has a point of frastration and once they have reached it, a time out has to be taken or things just seem hopeless. It might help to have someone outside of the family come in and help you with things. It will help you to feel better(by releaving the stress) and your husband will have a chance to step back and see you again. That you are sick and that everything is being done that can to get you back to yourself.

I hope that this helps and that you give it a try. Everyone including you needs a break every now and than and this will give that to you. See if you are getting the best treatment that you can by talking with others in your area like the ladies that would come in and help you. I hope you feel better soon.