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View Full Version : Another drug to add to the mix - feeling pretty toxic



Corella
09-26-2013, 04:46 AM
Hi everyone, hope you are all OK - havent posted in ages.

My Immunologist already has me on steroids, plaquenil, MTX injection and more recently - Endone for pain (taking .5mg every 2 to 3 days due to its addictive properties)

He is now thinking despite me only having a raised ANA and CRP, that as well as Sjogrens - he said I am just one criteria away from Lupus and is now treating it as such. I was off the MTX for just two weeks and my joints swelled up and I was really ill so back on that and yesterday was started on Cellcept as well as the MTX, it is hoped when I go back in 3 weeks - if I am tolerating the Cellcept, then he is going to take me off the MTX and then eventually the steroids.

Feeling pretty scared and rather 'toxic' with all these drugs. I had my second dose of Cellcept tonight, it said on the box you can get nausea and upset tummy, so praying I dont get that little delight.

All these drugs, they worry me - the side effects, I have been on MTX for almost a year and Plaquenil and steroids for a couple of years - and now I have even more. Doctor also said the increased risk of cervical cancer with the cellcept so I am having yearly PAP tests from now.

How are you all doing?

debbie-b
09-26-2013, 06:09 AM
Hi Corella,

I know what you mean, about feeling toxic. At one point I was on MTX, Mobic, Flexeril, Plaquenil, Medrol and Tramadol and just reading the side effects and possible long term effects, made me sick to my stomach.
Well the Plaquenil was stopped, because it didn't do anything for me. The MTX was stopped again, two weeks ago, because of liver problems. The Tramadol give me the itchy willies, can't take that. For a while I was trying Celebrex, got rapid heartbeat from it and dizzyness, had to stop IT.
Now I am only taking Mobic, Flexeril and a low dose of Medrol. But now I am in pain again. What a mess.
I hope evrything is working in your favor.

Debbie

SleepyInSeattle
09-26-2013, 08:31 AM
I think autoimmune diseases are a moving target...ya kinda gotta try stuff and see what works (and what doesn't). I think in some ways Rheumatologists are more like chefs than doctors - like we're a big pot of some complicated, difficult sauce, and they're standing over us stirring and seasoning - a pinch of this, a dash of that....no, still not right....okay, more salt, lower heat....keep stirring....no, still not right....maybe some of this seasoning or that one....LOL it goes on and on until HOPEFULLY eventually they come up with something halfway decent. But it can take a while and a lot of experimentation...more an art than an actual science. It's frustrating!

Anyway - sounds like at least your doc is talking about transitioning some things instead of just taking more and more stuff...that's good. Hopefully you fid the right balance and feel better soon.

In the meantime, DRINK LOTS OF WATER and eat healthy! : - )

Mica
09-26-2013, 01:44 PM
Yea I have been on that combination. The cellcept is very hard on your stomach so follow the directions exactly after a few years you get used to it and are able to fudge on the directions. I can't tell you how many times when I was on the mtx and cellcept because I had school in the morning I would think 30 minutes isn't going to make that much of a difference and eat but it does! Drink lots and lots of water when you take them and have a supply of popcicles on hand to help with the tummy aches.
BTW my last Rhuemy was useless because I have been on Cellcept for 7 years and this is the first time I heard that it can cervical cancer. BAHH no one tells me anything, thanks for sharing that because now I will be more active in finding a gynecologist.

Corella
09-26-2013, 08:52 PM
Yea I have been on that combination. The cellcept is very hard on your stomach so follow the directions exactly after a few years you get used to it and are able to fudge on the directions. I can't tell you how many times when I was on the mtx and cellcept because I had school in the morning I would think 30 minutes isn't going to make that much of a difference and eat but it does! Drink lots and lots of water when you take them and have a supply of popcicles on hand to help with the tummy aches.
BTW my last Rhuemy was useless because I have been on Cellcept for 7 years and this is the first time I heard that it can cervical cancer. BAHH no one tells me anything, thanks for sharing that because now I will be more active in finding a gynecologist.


I was told to take the cellcept at the same time as food but not with dairy products for two hours within taking it. I have had 3 doses, I take morning dose with my breakfast and my evening dose with my tea.

When will the tummy pains start? I have just checked my packet and it deffo says take with food, should I take it on an empty tummy?

Mica
09-26-2013, 11:25 PM
I was told to take the cellcept at the same time as food but not with dairy products for two hours within taking it. I have had 3 doses, I take morning dose with my breakfast and my evening dose with my tea.

When will the tummy pains start? I have just checked my packet and it deffo says take with food, should I take it on an empty tummy?

Went and checked my bottle to double check if I wasn't wrong and it is this the same said take on empty stomach, 1 hour before or 2 to 3 hours after meal. This is weird!!
I now eat with them but I used to not because it would make me throw up. You should ask your pharmacy or doctor to double check or something because I used to get my cellcept through the company for free too and thats the instructions that they provide and it's the same as the instructions my pharmacy provides too.

Corella
09-27-2013, 12:57 AM
Went and checked my bottle to double check if I wasn't wrong and it is this the same said take on empty stomach, 1 hour before or 2 to 3 hours after meal. This is weird!!
I now eat with them but I used to not because it would make me throw up. You should ask your pharmacy or doctor to double check or something because I used to get my cellcept through the company for free too and thats the instructions that they provide and it's the same as the instructions my pharmacy provides too.

Just checked with another chemist and they said I can deffo take with food and that often helps with the stomach ache.

Just found this link as well:

http://www.betterhealth.vic.gov.au/bhcv2/bhcmed.nsf/pages/roccpcts/$file/roccpcts.pdf

Mica
09-27-2013, 01:57 PM
Just checked with another chemist and they said I can deffo take with food and that often helps with the stomach ache.

Just found this link as well:

http://www.betterhealth.vic.gov.au/bhcv2/bhcmed.nsf/pages/roccpcts/$file/roccpcts.pdf

Hmmm this is weird maybe it's different for everyone?

Corella
09-27-2013, 06:56 PM
Im getting a bit worried, I double checked at the hospital that gave them to me and they said just not to have dairy 2 hours after taking the cellcept. All I know is that I have had no stomach ache or diarrhoea at all and I have had a few doses now. I have to double my dose in one week so perhaps it might kick in then.

I got excited last night, I had a sore throat, a really sore throat and I havent had a cold in over 2 years as my immune system is so 'super charged' according to my specialist, so you can imagine it was nice to feel 'normal' in terms of having a sore throat. I even had to miss my MTX injection and was ready to go to the doctors if I spiked a temperature.

But when I woke up this morning I had fought it off, I was so looking forward to being 'normal' and having a cold like everyone else (if that makes sense).

Oh well, I am having visions of my immune system dressed in a superman outfit and punching off viruses as they appear.

Abbyrition
09-28-2013, 10:33 PM
Lol I NOW have visions of my immune system dressed as Superman on crack :) He's knocked out viruses, but keeps knocking down my hands too.
Cellcept was just added to my cocktail. I haven't started it yet, but my Rheumy was clear that I should take it with food each time. I'm glad to hear you don't get an upset stomach when you take it with food!

n.mac
09-29-2013, 03:41 AM
I take 1500 mg cellcept twice daily due to an elevated anti ds-dna level which doesn't seem to care what meds or how much I take to control it.
As the cellcept does not seem to be having much effect my ruhemy questioned me at great length to insure I was taking my meds correctly.
According to him the warning/direction to take cellcept an hour before or 2 hours after eating has to do with proper absorption not concerns over possible upset stomach.
In other words if you don't follow the label directions it may not work as well or at all!

steve.b
09-29-2013, 03:48 AM
a few comment about food and medication ...

the main reason we take medication with food. is to reduce the side effects. (nausea)
when these medicines are mixed with our stomach acids..... there is a high possibility of reflux.

the reason we cannot take dairy with some medicines is again due to chemical reaction.
anyone on thyroid medicines also have to not have milk.
it is not unusual to have this type of instruction.

Corella
09-29-2013, 04:51 PM
Im so confused over this, I checked my label and it just has a warning about the dairy consumption but nothing about food. I double checked with the hospital pharmacist and then the consultant and they said I could.

However, I do like eggs for breakfast so have taken to getting up an hour earlier and taking it on an empty stomach. My dose gets doubled on Thursday so i shall see how it pans out.

But honestly, the only warning on the label is about not taking it with dairy produce. I am wondering if they are up to date with medicine info in Australia, because it does concern me that they said I could take it with food to reduce the risk of an upset tummy.

Barb R
09-29-2013, 08:05 PM
Hi,

I just found out I had Lupus today. And have done a lot of internet research today, to say the last! I agree with above-It appears to me that some of the drugs for treatment of lupus may have side effects that are worse than the symptom being treated. I plan on fighting this, and was wondering how long does everyone's remissions last, and are the flare ups longer than the remissions in general , or is everyone very different regarding times of flare ups and remissions.

Mica
09-29-2013, 09:43 PM
Im so confused over this, I checked my label and it just has a warning about the dairy consumption but nothing about food. I double checked with the hospital pharmacist and then the consultant and they said I could.

However, I do like eggs for breakfast so have taken to getting up an hour earlier and taking it on an empty stomach. My dose gets doubled on Thursday so i shall see how it pans out.

But honestly, the only warning on the label is about not taking it with dairy produce. I am wondering if they are up to date with medicine info in Australia, because it does concern me that they said I could take it with food to reduce the risk of an upset tummy.

You should contact the company that makes the medication. They should be able to tell you.

tgal
09-29-2013, 09:54 PM
Contacting the company is a great idea. Let's be honest, most of us have been to different rhuemys that told us different things. It is part of the problem with this disease (all AI diseases actually but especially this one). Since there is no actual test for it each doc makes the final decision on their own criteria and over time they tend to do the same with meds based on what their patients say. I have a seizure med that mixes badly with almost EVERYTHING but few of my docs have a clue which ones. I learned quickly to ask the pharmacist or call the drug company for info and/or special instructions. It really does help

Corella
09-29-2013, 10:11 PM
I had a good read of the printout that the hospital gave me about Cellcept, on the section on 'how to take your Cellcept', it states 'Cellcept can be taken with or without food'.

So I am going to go on that I think, especially as the specialist and pharmacist backed it up - perhaps things have changed, I dont know.

But what I do know is this morning when I took it on a completely empty stomach - I was in agony for hours afterwards and know for sure, I cannot take on an empty stomach again, it was like something ripped the lining off my stomach, it was awful.

It also said about spacing the dose exactly 12 hours apart, I am going to have another good read of the literature.

Thanks everyone xxxxx

tgal
09-29-2013, 10:14 PM
If the lit says it and it made you feel better then go for it! No need causing yourself more problems if not needed