[TallDoode]

Hi everyone,
Have any of you had your Rheumy put you on CellCept as a "precaution"? I was diagnosed two months ago in the hospital and was put on Pred and Plaq. When I got in to see my Rheumy he wanted to put me on Imuran but changed his mind and decided on CellCept. My kidney functions are normal, my blood tests are normal, my UA is normal etc. When I asked him why he wanted me on either med he said he was concerned about my Platelete count dropping as I weaned off Pred so the CellCept was going to take care of that. My Platelete count is 267 and has been stable as I have been weaning off the Pred. and has actually been increasing (204 when i was on 60MG and up to 267 on 30MG).

I decided to seek a second opinion by a Rheumy recommended by some of the local members of the Lupus club. He was aghast at the fact I had been put on CellCept w/o kidney involvement or other indications that I had organ involvement due to the potential side effects of the CellCept. He stated "in 30 years of Rheumatology, I and my colleages have never used such a harsh drug to treat a condition prophylactively". He also stated CellCept and Imuran are typically used as a last ditch "save the kidneys" sort of effort.

Any thoughts on this? I am probably going to change to this new Rheumy as I feel he is more competent in treating Lupus rather than being a Rheumatoid Arthritis specialist who happnes to treat Lupus as well.

Thanks,

dave

 

[Katharine]

Hello Dave and welcome

Um, I would also agree (though I am not a doc and have not seen all your results) that putting you on cellcept seems rather hasty under these circumstances.

My understanding is that Cellcept would often preferred if there is some kidney involvment whereas Imuran may be of more help with things like joint-pain and general wellbeing. Imuran may be used when plaquenil is not sufficient and overall disease activity is not controlled. It helps reduce the need for steroids. I was put on it for that reason. I don't have kidney problems but had overall control problems including joint pain, neuro problems and bloods which were way out.

Either way, it seems premature to be putting you on either until they see how you react with the pred taper. You are also newly diagnosed so it would perhaps be preferrable that things stabilise BEFORE introducing a pred taper.

Another possibility that you may want to ask the doc about is whether plaquenil might be responsible for falling platelets. Apparently one of it's side-effects is thrombocytopenia, although not a very common one.

Katharine

 

[ROSJAC]

Hello Dave And Welcome, I was dx with lupus 11 years. I took Plaq. for a year with no results. I took Imuran for several years and did great, then out of nowhere, my liver enzymes rose to 250. 4 years ago I found out I have lupus involvement in lungs. Lost 40% lung function thus far. I was put on Cellcept about 5 months ago. Started at 1000mg. a day, now up to 1500mg. Cellcept does have a lot of scary possible side-effects. I do not understand your Rhumy putting you on this drug at this early stage of your Lupus. Could you share how many mg. you are taking. Glad you got a second opinion. SLE is just a frustrating, life changing disease. Good luck sorting all the conflict between doctors. Rosie

 

[sam101360]

Hi:

CellCept is a very strong medicine, and as the others have said is only used as a later resort if all milder options have not been effective.

I have mild kidney involvement, to keep it mild I am on 2000mg of cellcept a day, I went through methotrexate, imuran and arava before they went to the cellcept.

In situations where the organs are at risk, the benefits will outweigh the side effect possibilities, but no need to open yourself up for those side effects unless absolutely required.

I understand your rhumy wanting to switch to a steroid barring therapy, however there are many options. Plaquenil is usually the first line of defense and that medication can take quite a while to become effective.

I am glad you got a second opinion.

Hope you feel better soon - Stephanie

 

[TallDoode]

Hi,

Glad you mentioned that - the original dose was 1000mg and he wants me to bump to 1500mg "because I am a big guy" (6'5" and 250lbs). I have never, ever seen any documentation that states CellCept should be given based on body weight. The new Rheumy wants me off it but he is having me do some additional labs before he officially takes me off it including a redo of the ANA and a few others related to Lupus.

Hope the CellCept works for you Rosie.

Dave

 

[sam101360]

Dave:

Again, I have to wonder about your first Rhumy...you are very right that CellCept is not dosed based on weight, I am only 5'2" and 1230lbs, not a large girl by any stretch of the imagination. I started on 500 then to 1000. I stayed at 1000 for over a year before I started to break-through and had my doasage upped to 1500 then to 2000.

I am very glad that you have a new Rhumy who seems to understand what meds to use for what situations.

I hope things settle in soon.

Stephanie

 

[Clare.T]

Hello Dave
It is important to have confidence in one's doctor that's for sure.
You are the best judge of the overall confidence you feel both as to how well informed your doctor is, and general standard of care, but I would bet on a lupus specialist every time. Many rheumatologists know little or nothing about lupus.

I haven't taken Cellcept but I have been reading forums and lupus literature for a long time and have never come across an indication that weight is a consideration in dosing. I seem to recall coming across references to weight, or rather size, when these drugs are being used for cancer and transplant.
I also agree with the others that drugs are used according to indications. If it ain't bust don;t fix it! One aspect of indication apart from actual symptoms, is what sort of response there has been to the other drugs that have been tried.

The only drug I know that is recommended in part as prophylaxis is Plaquenil. A number of lupus doctors advise staying on a maintenance dose even when in remission from forms of lupus that have required 'big guns'. I would wonder why this rheumy thinks that prophyalaxis is necessary in your case. Why should he think your lupus is going to progress or regress if you did suffer from symptoms that required Cellcept.

However, Cellcept is proving to have many applications in lupus treatment other than kidney disease. The same is true of Imuran. So for a doctor to say that they would never use Cellcept except for kidney disease strikes me as almost as odd. It seems to me that Cellcept has a similar role these days to Imuran, only Imuran is older and I think much cheaper.
These drugs are in fact used when other meds have not been enough or have not been well tolerated often in low dose as part of a cocktail, with the notion that once the disease is under control or stable or there have been improvements you can wean off them.
I was even offered Cellcept to deal with my remaining skin problems.
I am just a bit concerned that newcomers who are not so familiar with the various uses of lupus meds, get wrong impressions and start thinking Yikes Cellcept! Yikes Imuran! I must be really ill.
Of course there is a progression of meds that's usually tried depending on what a doctor thinks is suitable for a particular case and their prescribing preferences. Cellcept seems to be used nowadays in a role that extends from being an alternative to other steroid sparing disease modifying drugs such as imuran and methotrexate, and also as an alternative in many cases to Cytoxan which is generally regarded as the top big gun.



Clare

 

[TallDoode]

Hi Claire, thanks for the reply.

His plan was to keep me on Plaq for the rest of my life pretty much. He said studies have shown that maintaining on Plaq can help keep Lupus out of the organs if it isnt already in there. My current Rhemy didnt give me a reason for the CellCept - that is the problem. He mentioned Imuran to keep my platelete count up as I came off the Pred, then changed his mind a few days later and called in CellCept to the pharmacy instead of Imuran. When I asked him why he sidestepped the question. So one of two things is happening - 1) he doesnt have a good reason or 2) he isnt willing to tell me something more "serious" is wrong with me. Either way, I need to find a Rheumy who will either tell me the truth about my condition or who will explain my treatment plan to me.

One way or another, CellCept is not really indicated until other meds have failed, or been tried, or whatever. It simply has too many negative side effects that are not warranted until needed. I am responding well to the Pred and Plaq. Labs are looking good, I am feeling good, facial rash is gone, etc. Since this is my first flare, my preferred course of treatment would be to do as little as possible and see how it goes. If there are problems, then lets bump up the treament. To me it is like the doctors who are over-prescribing anti-biotics.... or shooting sparrows with a bazooka . (I am not advocating killing birds, just making a point). To me, that indicates a doctor who doesnt really know what they are doing.

Anyway, have to go give blood today for new doc (8 vials... ugly). Tried yesterday spur of the moment but wasnt hydrated enough and he couldnt get a vein on me. I am a hard stick at the best of times.

I will update you all when I see my new Rheumy and get labs back.

Cheers,

dave

 

[ROSJAC]

Hi Dave, It's me again. Can't remember why, because it's been a few years, but I had to have A CT scan. When the report came back to my GP, It said my lungs showed something that began with glass...and my GP never heard of this terminology. He sent the report to my Rhumy and he confirmed Lupus had entered my lungs. That is when I started Imuran. I know the dosage for Cellcept is not based on weight. Also, it is very expensive. If I did not have a script plan, I would be paying over $1000.00 a month. My point is,have you recently had a Ct scan that might have indicated organ involvement? Cellcept is an immunosuppressant,primarily used after organ transplants and to treat other conditions determined by your Doctor. Your case has sparked my curiosity and I hope you soon get some answers. Rosie

 

[TallDoode]

Hi Rosie,

I had a CAT scan in the hospital two months ago that was clear. I also had a chest x-ray (know it is different but still shows chest) two weeks ago. Neither indicated lung involvement. Honestly, I would HOPE that any doctor who put you on a med would have the cajones to say "look, sorry to tell you this but ..... " rather than keeping it a secret. We are all educated patients and I have caught a number of drug interactions in the past few years. Recently my GP put me on Hydralazine for my blood pressure which actually states "If you have Lupus, do not use this drug". He didnt research it well enough before putting me on it. Once he prescribed it, I jumped onto Epocrates.com and looked it up. Called him the next day and asked for something else.

Guess I hope that I am not posting in a year saying "woe is me, I wish I would have stayed on the CellCept" but until someone shows me a lab/MRI/X-ray/CAT scan/VooDoo Doll that indicates I need to be on it, forget it. Lets see if the "standard" treatment of Pred and Plaq work and go from there.

I am down to 10mg Pred and 400mg Plaq and feel great. Have a bit of feet and hand neuropathy but that may be unrelated to the Lupus as it started in September and I didnt have Lupus symptoms till November/December. I may have hurt my back the end of September so I have an appt with a Neurologist to see if I have a slipped disk that could be causing it. Honestly though, since I got below 30mg Pred the neuropathy feels better so not sure if there is a coorelation.

Thanks again everyone,

dave