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Discussion Starter · #1 ·
In November a week before Thanksgiving, I went to see my GP and tell him I was feeling rather weak and even more tired then I have ever been in the 9 years I have had lupus. My blood pressure was lower than normal and my heart rate was kinda slow, so he sent me to the emergancy room. While there they naturally took blood and urine, next thing I know I am being put in ICU in renal failure and my potassum (spelling) was 6.9. The next day I went threw 4 1/2 hours of dialysis. I ended up being in ICU for 5 days,and the hospital a week.

They changed some of my meds, yet nothing they did would bring my blood pressure back up into a normal range. My creatinine was sitting at 6.9 as well, when I finally left the hospital it was down to 2.8. I was removed from taking my cyclesporin and placed on cellcept, they took me from 1000 mg a day slowly to 2000 mg a day to let my body get use too it. once I hit 2000 mg I was slowly removed from the 40 mg of steriods. My creatinine a week later was 1.1 and has remained at that. They said it was the cyclesporin but now I am staying in one flare up after another, I am in so much pain from my muscles and when my legs were swollen from the water gain I had, blistered and cracked, are now dried out like old burnt skin, the sores and cracks are not healing and I am in so much pain.

My legs from the knees down feel like they are on fire and several thousand needle pricks, they have me on lyrica 75 mg, which stops the pain somewhat, they also have me on laratab but I stopped taking it because it did nothing but make me even more tired. My joints are all sore and swollen, I am lucky I am able to type this right now because my hands and fingers are swollen and ache.

I have never ever felt like this since being told I have lupus. The doctors can not explain my legs, since the swellen has been gone since I left the hospital, they just look at it, agree it looks bad, agree that is has got to be painful one even said wow that looks yukky. I feel like the cellcept is not working, but I have been told that this is the last drug they can give me since I have tried all the others in the pass and they did not work. Well the cyclesporin worked except it was not kidney friendly. The other new rule all my meds have to be kidney friendly. They have mentioned Rituxin again but because the FDA still has not said it have been tested for lupus my insurance company will not cover the cost.

I feel like my hands are tied and I am at the end of my road. I continue taking the cellcept with hopes it will kick in again whille we battle FDA, state laws and insurance companies, and we all know that battle is lost before we even start it. The other option given to us is for us to move to a state that allows the use, so the insurance company will pay for it. Which means I give up my wonderful doctors here, my husband gives up his job he actually loves and we move possibly to a state that might ok it. But anyways this is why I have not been posting, kinda have my life in a free fall waiting for me to hit bottom. :eek:
 

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wow. big hugs to you sweetie. hang in there. it all seems so overwhelming i'm sure, but you have your husband with you, by your side every step of the way. biiiiiig huuuuuuug


carol
 

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Hello Mysticred and welcome back,

I'm so sorry to hear of all those troubles that have kept you away. You must feel so frustrated and fed up and I think rightly so.

sending you big hugs and lots of virtual Belgian chocolate :)
I hope that the cell cept starts to make a big difference soon,

Katharine
 

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I am so sorry to hear about all you're going through. What a terrible fright you must have got when you heard about your kidney failure:worried: I hope and pray that the Cellcept works for you. It sounds like you are in terrible pain and discomfort especially from your legs :sad:

I dont envy you the dilemmas of the Rituxan lottery. I hope you have a good advocate in your rheumy?

Im at a loss as to what to say. Im just very sorry that you are having such a hard time and that your treatment choices are diminishing.

Please let us know (when you're able) how you are and if there is any improvement at all.

Much love and strength to you
Joan:rose:
 

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Hi,

Sorry to hear that things have gone so bad for you lately.

Just to let you know the Rituxan trials are complete and the findings are to be released to the public in March. Shortly after it goes somewhere to have the proposal to the FDA written up. The researchers are hoping it will be on the fast track since it has already been approved for RA.

Don't give up on getting Rituxan. Being turned down by your insurance the first time isn't the end. Your doctor needs to be pushy and get to the top person making the decisions and prove it is a medical necessity. It may not work for you but it did for me the first time. My doctor bombarded them with all the journal articles showing the efficacy for the drug. If that doesn't work contact your employers HR department to see what they can do. The final fallback would be to appeal to the drug company itself. My doctor just had someone qualify to get it directly from the company. The only hitch there is getting a hospital to do it when they are not supplying the drug.

Take care,
Lazylegs
 

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Hello Mystic Red, I have nothing I can suggest being in the Uk and not knowing your Health System but am sending lots of love.
x Lola
 

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Discussion Starter · #7 ·
Thank you

I want to thank you all so much for posting to me. I can say I am not longer feeling sorry for myself and actually see some hope down the road. So thank you all so very much it means alot to me.
 

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I am sorry that you have been having so many health problems lately and are in so much pain. I hope the docs find something to get the pain other problems undercontrol.


BIG HUGS,
JEN
 

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Check out the NORD ( National Organization for Rare Disease) site
http://www.rarediseases.org/

and look under services. Look up orphan drugs ( or put into orphan drugs into the NORD search box) it might give you some leads to help pay for the Rituxin.
Joanne
 

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hi mysticred

I just want to say that I'm sorry you are going through so much at the moment :sad:

I hope you feel better soon & wish you lot's of luck with your treatment :luck: I'm sorry it has to be such a battle for you :worried:

take good care,try & stay strong & hopeful
please keep us updated
karen x :hug: :flowery:
 
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