Meds and energy level

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PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 6/11/2007 9:43 AM (GMT -7)   
My positive attitude is wavering and my frustration level is starting to slowly build and I need to get it under control. My rheumy was going to increase my CellCept from 2,000 mg to 3,000 a day because my symptoms had worsened, but when she saw my lab results, she decreased it by 50%. She thinks the CellCept is affecting my kidneys. In 3 weeks we'll redo the bloodwork and go from there. This wonderful drug is what finally turned the corner for me and gave me a wonderful boost of energy, cleared up my brain fog, and helped my joint pain. As could be expected, the fatigue is back and my joints are worse. I haven't noticed any brain fog but maybe that's because my brain is just one big old fog anyway. :)

Of course I'd certainly rather learn that the increase in creatine and bun levels are caused by the med rather than by lupus. And I don't want to increase the prednisone again. In fact when I even think about doing that I tear up. What experiences have you guys had with CellCept and have any of you had to substitute something else for it? I'll probably call my neuro but I hate to call on Monday morning when they're swamped, and I also hate to call every time I get a hick-up. What I really want to avoid is going into depression.

I really feel like venting, but instead I think I'm going to have a good cry. Then maybe I'll feel better and will call the doctor. Any suggestions you might have are welcome.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 6/11/2007 11:25 AM (GMT -7)   
Pat,
  I'm sorry your having such a rough time....((Hugs)). I think calling your doctor is a good idea. She needs to know how bad your feeling physically and emotionally. I hope things turn around for you soon. Hang in there and keep us updated. You are in my thoughts and prayers.
                                                               Babs
 
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/11/2007 11:33 AM (GMT -7)   
Hi Patty--
I haven't gotten on cellcept, but I'm planning on asking about it. I'm having real ut problems and my kidneys hurt all the time. The cat scan didn't show anything, but I've learned that it depends on who reads them. Once thing that might help would be to eliminate any other medicines that might be affecting your kidneys adversely, so you could tolerate the ones you really need. Also, did they check you for addison's disease? In that case, cortisone would provide much more relief probably than prednisone, maybe be easier to handle, I think they may use a combination of both. I know cortisone always helps me, prednisone works for two days, then I'm a mess for a month. I'm supposing they check your ACTH and cortisol regularly, my endo does, and it's always low, because the pred causes adrenal insufficiency and I probably had it anyway before that because of AI disease. Maybe there is something, like non-necessary that you could avoid, based on your doctors suggestions. I don't take a multivitamin high in vitamin c anymore because that vitamin is water soluable and increases the acid in my UT causing more problems. I would call the doctors office, even though it is busy, and talk to the nurse and leave a detailed note at least. You are on a lot of meds that are hard on your body. That way maybe you can stay on the meds that help you, or at least better tolerate a new med. I have to do that for my liver. Or switch your meds around to different types of meds to give your kidneys a break--that is the ones processed by the kidneys. I hope you feel better soon. I hate AI and endocrine diseases and I am so sorry you are suffering. I hope you feel better and you will be in my thoughts and prayers. Its so hard when you have endocrine stuff with the autoimmune disease too.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/11/2007 11:36 AM (GMT -7)   
Pat, I'm really really sorry this happened to you, especially when you were doing so well on the Cellcept and you were having some really good days. I really do think it's especially hard to start feeling bad after having a taste of what it's like to feel good again and getting your hopes up that it might last a while.

A call to your rheumy would probably be a good idea too, although I know you don't want to increase the prednisone. Maybe your rheumy would have some other options for you though.

I think you have every right to feel the way you do. I know you usually try very hard to stay positive, but we're all allowed some sadness and anger when this disease turns everything upside down. Maybe a vent and a cry will do you some good. I know if I hold it in too long, it just contributes even more to feelings of depression.

I pray that either the neuro or your rheumy can help you and give you some options as far as meds go. Feel free to vent anytime you need to - we're here for you through all of this. You are so good at offering support to others here, now it's your turn to get some support from us. Hang in there and take care.

(((((Hugs)))))
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/11/2007 12:06 PM (GMT -7)   
Thanks Babs, Marji, and Hippi for all your support. I've had some kind of tummy virus for the past few days which I know makes everything else appear to be worse than it is. What gets to me sometimes is the thought that this may be a picture of the rest of my life. Giving up is not an option, but as you guys know only too well, sometimes it's just harder than others. My mantra is "this too will pass.....this too will pass."

Marji, I learned a lot from your post. To my knowledge, I've not been tested for Addison's disease. I've never suddenly decreased my prednisone levels but always taper very slowly. I have had no decrease in appetite nor weight loss. What would prompt a doctor to test for it?

My hubby has urged me for some time to see an endo, and perhaps I should listen to him. He's going to Baylor at Houston for a neurological problem and one of his good friends who's a doctor suggested to him that since we're already going to be there, that I make an appt to be evaluated for my ai diseases. I'm not sure what they could do for me that my rheumy isn't already. The problem I have with these diagnostic centers (and I well may be misinformed) is that people are recommended to specific kinds of doctors, like neuro's or rheumy's etc. when the disease might actually fall under a different umbrella. My mother was sent to Mayo to see a neuro who found nothing other than frontal lobe encephalopathy, and I always wondered why she wasn't seen a rheumy or an endo, because we knew she had lupus. We never did find out why she was an invalid.

You guys are absolutely wonderful and always pick me up when I'm down.

Love,

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/11/2007 4:10 PM (GMT -7)   
Hi Patty--
Glad you are feeling better and sorry about the gi thing. I hate those. The reason I asked about Addisons disease is that I go to a thyroid site and since you are on synthroid and have had thyroid issues, alot of people with AI thyroid or hashis have adrenal gland insufficiency, which can turn into Addisons disease--where your adrenal glands don't work right. I think synthroid might be partially to blame, or maybe it is genetic, I don't know. Addisons wreaks havoc on your kidneys and I spoke with a woman whos mother died from it and she mentioned that she has it too and is not skinny doesn't have weight loss, that most docs are ill informed about that. It is a very very slowly progressing disease and they don't usually diagnose people until it is very late in the disease because it progresses so slow, though you may have been complaining for some time. Tests for ACTH and cortisol are the first tests then there are more. I was told that they did not want to put me on pred regularly because it can cause an addisonian crisis, adrenal failure. I can't imagine being on prednisone alot is really good for the adrenals, it's just a thought because I always thought people with Addisons had to be really thin and stuff and that's not the case at all, especially if you have other endocrine problems like hypothyroidism or are on other steroids like prednisone. This woman felt very strongly that people with hashis and other problems be tested once in a while to make sure that they aren't developing it. Addisons is also a progression of some types of polyglandular dysfunction. The thing is they can prevent the damage and spare your adrenals by giving you cortisone and I think they might give pred with it, not sure. Since your kidneys are bothering you it might be something to rule out. I know I'm really struggling to get tested because I have the hyperpigmentation and low ACTH and cortisol. Well, I'm glad you are doing better.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/11/2007 4:19 PM (GMT -7)   
Hi Marji,

That is all so very interesting and I'll be sure to mention it to my rheumy when I seen her three weeks. I never had thyroid problems until I developed thyroid cancer and I take synthroid because I had a thyroidectomy.

Probably the world's worse excuse for not going to a doctor is that "I'm tired of going to doctors because it seems that it's all I ever do" but I hate to admit that's most likely what keeps me from going to an endocronologist. Maybe this will get me off my skinny rear end (oh, it's not skinny anymore thanks to my good friend PREDNISONE!) and make an appointment to see someone. I'll be sure to give you a full report when that happens.

I appreciate the time you always take to answer questions we all pose here.

Love,

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 6/11/2007 7:04 PM (GMT -7)   
Pat,
  I hope you feel better soon. Just wanted to let you know your in my thoughts and prayers.....(((Hugs))).
                                                      Love and hugs, Babs
 
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/11/2007 8:17 PM (GMT -7)   
Oh ((((((pat))))), I'm sorry I just got to your post. I remember you replied to my post about feeling good and the fear of when it will end. You had told me you were feeling good too. Dog gone it! This disease really bites! I know absolutely nothing about cellcept I just wanted to let you know I understand how you feel and Just want you to know I'm keeping you in my thoughts and prayers. I'm glad however the your doctor is being cautious with your kidney's You don't need that on top of everything else. Hopfully they can find a way to work around it and get you back on the meds that make you feel human again.
Lots a love
carol
God Bless
 Lupus.Possible CREST,COPD, High B/P, Oteoporosis
xanax,triam , vicodin.5x3, Evista,. oxygen Plaquanil800mil, . effexor. spiriva, xopenex. pred.5.mil.
 
Come ye, all that are weary and heavy laden, and I will give you rest!
 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/12/2007 1:55 PM (GMT -7)   
Thanks Babs and Carol,

I feel better today. Go figure. I don't know why, but am so glad that I do. And I just stopped on my way home from the yarn store at a vegetable stand and bought the best fresh homegrown peaches, tomatoes and cucumbers, I came home and ate a peach and a tomato. If that won't make you feel good, what will!

I appreciate your sweet messages.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/12/2007 5:10 PM (GMT -7)   
Yay yeah yeah yeah    I'm so glad that things are looking up again.  Enjoy your fresh produce :-)
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/12/2007 8:52 PM (GMT -7)   
Thanks. It was great Hippi. I made cucumber onion tomato salad and what a reprieve from this heat! It was so good. My granddaughters ate peaches until I thought they'd be sick.

Funny how things can go up and down so fast! The next time I get down remind me how short lived it was.

Sleep tight.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


uckaren
Regular Member


Date Joined Jan 2006
Total Posts : 43
   Posted 7/2/2007 4:27 PM (GMT -7)   

Hi:

I do not have lupus, I am writing you about Cellcept.  I have hemlytic anemia and ulcerative colitis, both auto immune disorders and they feed off each other, when one acts up it seems to be a chain reacton.  Anywho... Cellcept has been suggested for me and I'm afraid of it, I'm on pred. now and have been on it almost a year different doses, I respond to it, it just takes time and then when I try to get off all havoc breaks loose.  I know Cellcept is not that old and hasn't really been tested much, but wondered how you came to the decision to go on it.  Don't you have to be on it for a long time?  Can you ever get off it?  Is it expensive? 

I know how you feel, I too am depressed now that my bloodwork is not good and I have to go on high doses of pred. again, my diseases really such too.

I'm sending you a hug and hope you will write me back, any info is appreciated.

Thanks.

Karen


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/2/2007 4:51 PM (GMT -7)   
Karen,

I can imagine how depressed you are if you're going to have to go on high doses of prednisone, and since you have had to do so in the past you are well aware of the pros and cons of the high doses. I've been on prednisone for about three years or so, but it wasn't until last year that my former rheumy put me on 60mg a day and kept me there for a couple of months. The side effects were horrible, as you know. My new rheumy knew that I couldn't tolerate methotrexate and that I was desperate to taper down from the higher doses of prednisone, but my labs still didn't look good, so she suggested CellCept. I had enough faith in her and felt so bad that I didn't investigate the drug, so I didn't know how new it was or what the side effects might be. As it turned out, it made me feel much better fairly quickly. As I mentioned in my original post, my brain fog decreased, my energy level improved immensely, and my joint pain improved. I was devastated when I had to decrease it to 1000 mgs a day.

Yes, it is very expensive - over $100 a month, but my insurance covers most of that. I have not asked my rheumy how long I should expect to take it, but I do know that unless it causes too much damage to my kidneys, I'll stay on it as long as it continues to make me feel better. I haven't noticed any side-effects whatsoever from it.

Your questions are some I should ask my doctor when I see her next week. I've been sick for over three years and was so anxious to try anything that would make me feel better that I went on blind faith.

To have hemolytic anemia and ulcerative colitis acting up at the same time must make you as anxious as I was to find something that helps. If you do try it, I hope you have as much success with it as I have.

Good luck.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


uckaren
Regular Member


Date Joined Jan 2006
Total Posts : 43
   Posted 7/2/2007 4:58 PM (GMT -7)   
Pat:
Thank you very much for the quick response. I'm glad to hear you don't have side effects on Cellcept, I hopefully will not either.
I will keep you posted. I just e-mailed the doc that wanted me to try cellcept, so we'll see what he says.
Thank you so much, your words are appreciated.
Hang in there..
Karen
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