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?
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.
I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).
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! : - )
Barb R (09-29-2013)
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?
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 found this link as well:
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.
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!