Lowering one med and bump up another..

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Heidi55529
Regular Member


Date Joined Mar 2006
Total Posts : 147
   Posted 4/13/2007 6:15 PM (GMT -7)   
It seems like everytime I get to lower a medication, I also have to bump up another medication. So I always end up taking more then I did before.

So I had my routine rheumy appointment today and my labs are looking okay. I had some improvements and some set backs. My complement levels have always been somewhat low, but even lower this month. So I'm a little more anemic at the moment. Which could also be due to the fact that I'm on my menstrual cycle and it's been really heavy this past week.

And there was also something that I usually test positve for but it came back as negative this month. I forgot what test it was. But my doctor thought it was a little strange.

Overall, she said that I'm improving in some places but she's like to see more of an overall improvement and not just here and there. With other labs not looking to well. So she feels we're still going in the right direction in terms of medication and treatment.

So this month, I'm going to be lowering my prednisone from 10mg to 5mg a day and bumping up cellcept from 4 capsules twice a day to 5 capsules twice a day. Which brings me to 2500mg total of cellcept everyday, isn't that the max amount I can take?

I'm a bit nervous, since it's a big drop in the prednisone. But the rituxan infusions I had last month are kicking in and with bumping up the cellcept my doctor said I should be okay. 10mg is the lowest I've ever been and I haven't handled tapering too well in the past. So I'm keeping my fingers crossed, my doctor said try it for a few days and if I start feeling sick or tired then I can bump it back up to ten.
I was diagnosed with Lupus with Antiphospholipid syndrome in Nov 05.
Current list of medications includes:

Cellcept 250mg/4 capsules twice a day, Prilosec 20mg/1 capsule once a day, Plaquenil 200mg/one tablet twice a day, Metoprolol 25mg/half tablet twice a day, Prednisone 10mg/one tablet once a day, Coumadin as directed, Tetracycline 250mg/ two capsules twice a day

Avita cream, Clindamycin lotion, triamcinolone ointment daily to control skin rashes.

Rituxan infusions twice every six months


Heidi55529
Regular Member


Date Joined Mar 2006
Total Posts : 147
   Posted 4/13/2007 6:18 PM (GMT -7)   
Oops, I had one more question. What containers do you guys use to sort out your medications? I'm on so much stuff that they don't fit into my pill sorters anymore. Especially the capsules since they're bigger. Anyone have any suggestions on something I can use. I currently have these day ones that I got from the dollar store that has four slots and they've been working okay for me but with the added capsules they're pretty much full. So I might have to find something that's bigger to hold all my medications. Anyone that has a good link or suggestion on where I could buy one would be great.
I was diagnosed with Lupus with Antiphospholipid syndrome in Nov 05.
Current list of medications includes:

Cellcept 250mg/4 capsules twice a day, Prilosec 20mg/1 capsule once a day, Plaquenil 200mg/one tablet twice a day, Metoprolol 25mg/half tablet twice a day, Prednisone 10mg/one tablet once a day, Coumadin as directed, Tetracycline 250mg/ two capsules twice a day

Avita cream, Clindamycin lotion, triamcinolone ointment daily to control skin rashes.

Rituxan infusions twice every six months


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 4/13/2007 6:45 PM (GMT -7)   

Hi Heidi,

   It's good to hear your doctor thinks things are going in the right direction as far as are your medication and treatment. I hope you will see even better improvement soon with the change in meds. I think 3000mgs is the max dose of Cellcept. I'm sure the ones taking it will know better. Hopefully, this time tapering the pred will be easier for you.

   My pill box is the weekly one that has the day and night slots.  The slots on mine are pretty big but, I have to put my other meds that I take at different times right next to it so I will remember. I think it was Lynnwood that said she has 4 of the weekly ones to last her a whole month.

   Thanks for giving us an update. Please take care and keep us updated. You will be in my thoughts and prayers.

                                                   (((Hugs))) Babs


 Co-Mod: Lupus Forum
 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.


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 4/15/2007 9:31 AM (GMT -7)   
I actually now have 8 (yes, eight) of the weekly pill boxes with the giant daily containers. I use 4 of them for my morning meds, which just about uses all the space. I don't know quite what I'll do if the dr decides to increase my Cellcept, those capsules are big! Maybe move the multi-vitamin to the evening....

Since I started having to take 7 pills at night rather than 3, I've started using the pill boxes then, also. There is some room left in the night boxes...

I only count pills once a month. I've found that counting pills more often than that kinda presses on my "let's be depressed' button, and it's well worth the few dollars in pill boxes to avoid depression! (I do kinda' keep an eye on when my next dr appts are so that I don't count pills past the dr visit in case some change occurs....going back and re-counting is a *real* drag!

Take care, I'm interested to see if increasing cellcept allows you to drop the pred...I'd like to do that as soon as my body is ready for it! (Losing pred weight would be great!)

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Xanax, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
OTC Daily: Multivitamin, Calcium, B-12, C, D; As Needed: Ibuprofen, Tylenol Sinus

Allergies: All Sulfa-based medications; Levofloxacin,  Levaquin

DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 4/15/2007 9:59 AM (GMT -7)   
Heidi, I had a rough time tapering off my prednisone until I started CellCept. Now I'm down to alternating between 5mg and 2.5mg. My dr. is going to increase my cellcept next month (I'm on 2000 a day) and try getting me off prednisone. I've told her I'll do anything to get off prednisone, so my fingers are crossed. I hope you have the same luck with CellCept as I have. Good luck.

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


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 4/15/2007 10:11 AM (GMT -7)   
Heidi, I hope you are able to successfully taper of the prednisone. That does seem like a big drop initially, but maybe the infusion and the Cellcept will make it not too bad. It's really encouraging to read how much success a lot of you are having with Cellcept and that it is allowing you to get off of prednisone.

I really hope things continue to improve for you. I don't have any suggestions about the pill boxes except to try to find ones with really large compartments. I had to buy one with really big compartments. I like Lynnwood's idea of buying enough boxes to set up a month's worth of meds because it can be a bit of a downer setting up meds every week and thinking about doing it for the rest of your life.

Heidi, keep us updated on how the pred taper goes and how the increase in Cellcept is working.

Take care
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/

 

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Heidi55529
Regular Member


Date Joined Mar 2006
Total Posts : 147
   Posted 4/18/2007 10:49 PM (GMT -7)   
I don't think I'm handling the prednisone change to well. I woke up feeling completely sick today with a headache that made my whole left side throbe. I slept early last night because I was tired and didn't even wake up til 1:30 in the afternoon. I had to take my dog for a walk and I got a bit winded that we stopped and sat in the grass for a few minutes. When I got back inside my house I just laid down again.

Slept for a bit when I woke up to try and eat something, I barely ate half of a bagel and just couldn't eat anymore. So I took some tylenol hoping that it would help.

I woke up again around 6PM and decided to try and eat something, but took one bite and felt nauseated and had to spit it back out.

Back to laying down, and around 8PM it was time to take my meds so I drank a glass of water. Within a couple minutes that nauseating feeling came back and next thing I know I throw up. It was mostly just the water I drank because I didn't eat anything all day.

So that wasn't good, but my headache subsided a bit after I threw up. I sat down for a bit afterwards and I felt a bit better.

It's now 10:30pm and I just ate some applesauce and it's stayed down. My stomach still feels like it's churning so I don't think I'm going to eat anything else.

My temperature, heart rate, and blood pressure is normal. And I haven't felt sick like this in a long time and I certainly haven't thrown up in a long time either. So I'm not sure what caused it.

But I did leave a message for my doctor as well as an email for her to call me back. I just don't think I'm tapering very well and I think I need to bump back up to 10mg.
I was diagnosed with Lupus with Antiphospholipid syndrome in Nov 05.
Current list of medications includes:

Cellcept 250mg/4 capsules twice a day, Prilosec 20mg/1 capsule once a day, Plaquenil 200mg/one tablet twice a day, Metoprolol 25mg/half tablet twice a day, Prednisone 10mg/one tablet once a day, Coumadin as directed, Tetracycline 250mg/ two capsules twice a day

Avita cream, Clindamycin lotion, triamcinolone ointment daily to control skin rashes.

Rituxan infusions twice every six months


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 4/18/2007 11:45 PM (GMT -7)   
Heidi, you've really been having a rough time. I hope you have a doctor who is is responsive to your calls? I don't know what's worse....a bad headache or nausea. But both at the same time! I hope you get some relief real soon.

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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/19/2007 2:04 AM (GMT -7)   
Hi Heidi, I'm sorry you are having a tough time getting off the pred. It seems more people than not have this problem. Dropping from 10mg to 5mg all at once is a large drop. Maybe the doctor can bump you back upto at least 7.5 for awhile and see if that helps. I know I had a miserable time. In fact the doctor took me off of the pred all together. I was so sick I could barely get around. I went back on it again. I hope they can find the right combination for you and you start to feel better.

Hugs
carol
God Bless
Carol
 
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , Opana ER for pain, Evista for osteo,. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
 
Come ye, all that are weary and heavy laden, and I will give you rest!
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 4/19/2007 8:29 AM (GMT -7)   
((((Heidi)))) I'm so sorry the decrease in prednisone has been so hard on you. I agree with Carol that going from 10 to 5 is a big drop and hopefully your rheumy will bump it back up and have you taper more slowly. It sounds like you need a slower, more gradual taper. Hopefully you'll hear from the doctor soon and he'll help you get things under control.

Take care
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



Heidi55529
Regular Member


Date Joined Mar 2006
Total Posts : 147
   Posted 4/19/2007 11:49 AM (GMT -7)   
My rheumy is out of town for the week and won't be returning until Monday. But I spoke with the doctor that is covering for her at the moment and he said that I can go back up to 10mg of prednisone for a week to see how I feel and if I'm doing okay that I can try tapering again.

The weird thing is that I woke up this morning feeling completely fine. No headache and no joint pains like I had yesterday. So I don't know if it was a combination of the dosage change, or I was just having a horrible day.

But what I do know is that I do not want to feel like that again. Since I feel okay today, I think I'm going to try taking 7.5mg instead of the 10mg. I definately still want to try and taper the prednisone, but I just don't think I was ready for 5mg just yet. So I'll go with that and see how I respond. If it doesn't work out well then I will bump myself back up to 10mg.

It was just weird yesterday. I rarely ever get nauseated and for me to throw up is just strange because it never happens. I'm hoping it was just a fluke and I just had a bad day.

Thanks for the warm wishes everyone and I'll keep you updated on how I do.
I was diagnosed with Lupus with Antiphospholipid syndrome in Nov 05.
Current list of medications includes:

Cellcept 250mg/4 capsules twice a day, Prilosec 20mg/1 capsule once a day, Plaquenil 200mg/one tablet twice a day, Metoprolol 25mg/half tablet twice a day, Prednisone 10mg/one tablet once a day, Coumadin as directed, Tetracycline 250mg/ two capsules twice a day

Avita cream, Clindamycin lotion, triamcinolone ointment daily to control skin rashes.

Rituxan infusions twice every six months

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