Hello everyone, I have a question in regards to meds for either SSJ or lupus. I've been taking cellcept for 4 mos. for the lupus to help with my kidney damage. Since AI suppressants are supposed to lower the immune system resulting in lower WBC, why would mine be steadily increasing (3 to 7). My GFR is also jumping around from 29 to 42, 36 and back up to 42. I've read that after stage 2 damage cannot be reversed and GFR will not improve but can help slow progression. My bloodwork also show high inflammation. My doc couldn't explain either only that he believes it's helping the kidney inflammation??? I'm going crazy trying to come up with an answer. Any comments anyone would have would be very helpful. Thx!
you did reply initially. I replied to you w/additional questions directed to anyone who could help. I would like to know why my WBC would be increasing if I'm taking an AI suppressant is supposed to lower your immune system. since my WBC has increased from 3-7 I've been experiencing wide-spread symptoms. Wondering if the increase in WBC could be the reason for the flare. some of the symptoms are SS and some Lupus. Thanks.
purplebutterfly said:
Hi maria
I thought I had left a comment I must have forgot to hit to post it.
I Have lupus also and just started Benlysta for it plus plaquinill and some others for arthritis and things.
My labs will be all over the boards when I am flaring. Do you see a kidney doctor?
My wbc will go up when I am flaring. Have you seen your GP
You may have an infection some where in your body any sign of fever cough stomach virus?
Our body reacts in such odd ways that some times they can not find out exactly why some thing is going on. Usually my doctor will do blood work every 3 months to see if it has changed any.
I wished i could be of more help hopefully some one will come along in a while that can help more.
I would see the doctor next week and have him/her give a better explanation and check for an infection since we are prone to having infections.
I don't really know anything about Al suppressants or GFR so I'm not much good to you for the information you're looking for. Sometimes not knowing or understanding what's going on is worse than the answers. I hope someone can help you find them.
Hi Maria, sorry you were kind of left hanging. I am in the same boat as Josh, where I truly had no clue how to answer. I do hope you are in good hands and your doc will continue actively looking to get to the bottom of things. Sending good thoughts.
Hi Maria,
I understand the whole up and down blood work stuff as well… It’s all over the place all the time unfortunetly from what i understand, us lupus and ss patients never much have the luck of straight on bloodwork numbers … Guess it’s all in what your body is reacting to at the moment of the blood draw ? Not sure myself… But u can try to ask more about it with your doctors… U know i see a hemo doctor too and maybe they could explain the blood thing a little more in depth? Idk… Good luck and keep ur head up as much as possible… We understand!
Hi Maria, i was on cellcept for 2 months, and suffered terribly from the side effects. I let my dr know, and was told oh no no, thats not from cellcept, you need to see a cardiologist! This coming from the one who answers the phone in the office! I was so upset. I ended up with all kinds of damage from the cellcept. From irregular heartbeat to protein in my urine. But will anyone blame the problems i suffered on the cellcept? Nope. Just to stop taking it, and lets see what we put you on now. I refuse to be a guinea pig anymore. Thank God for my couseling therapy. And finding a new pulmonologist who treats asthma patients who also have sjogrens. He promises to get to the bottom of my breathing problems, and get me the right kind of help. Of course this is just my story. I pray you do better than I did, as I know some people do well on cellcept. Im just not one of them.,
Kaz, I always learn so much from your posts!!! BTW…..thanks to your detailed explanation a while ago about D3, I took control of it myself, carefully of course. My latest set of bloodwork finally shows my D3 levels right where they should be and I actually have had a reduction in the severity of my nerve type issues. Yay and thank you.
Purplebutterfly, do you have any kidney disease? How do you know when having flares which one it is from--the lupus or or SS? Or does it even matter? I am not satisfied with the answers my doc had given me and then again
purplebutterfly said:
Hi maria
I thought I had left a comment I must have forgot to hit to post it.
I Have lupus also and just started Benlysta for it plus plaquinill and some others for arthritis and things.
My labs will be all over the boards when I am flaring. Do you see a kidney doctor?
That's fantastic EnjoyLife. I am so glad you have seen the difference. :-) Many people do not realise about the importance of getting vitamin D up to optimal level and disease activity. You just reminded me to take mine. I am now taking 50,000iu formula I bought from the US. I take it every 10 days, and it's keeping me at a good level. So much easier than taking 5,000iu daily (more in winter).
It may pay to link the vitamin D subject to here as this may also help Maria. Everyone with any autoimmune disease needs to ensure they get levels checked every 3 months. Also B12, as low levels of that will cause nuerological issues, as well as fatigue, cardiac, respiratory and muscle issues.
Gmabuster, I would recommend you try taking vitamin B12 (this is a water soluble vitamin so you will excrete any excess) and see if this helps to improve your breathing issues, as low levels can cause or add problems in this area.
I took B-12 a couple years ago when I was very ill and my WBC was 1. Cancer Center said my level was extremely low. Took the B-12 and it went back up. Also my magnesium level was low. I don't remember seeing B-12 or magnesium levels on the results of current bloodwork I had with my new rheumy. Or many they weren't flagged so I didn't take notice. All I know now is I'm in a major flare: mouth/tongue lesions back w/a vengeance, getting bumps all over that itch and leg/body twitching mostly at night, eyes acting up more than usual....
Kaz said:
That's fantastic EnjoyLife. I am so glad you have seen the difference. :-) Many people do not realise about the importance of getting vitamin D up to optimal level and disease activity. You just reminded me to take mine. I am now taking 50,000iu formula I bought from the US. I take it every 10 days, and it's keeping me at a good level. So much easier than taking 5,000iu daily (more in winter).
It may pay to link the vitamin D subject to here as this may also help Maria. Everyone with any autoimmune disease needs to ensure they get levels checked every 3 months. Also B12, as low levels of that will cause nuerological issues, as well as fatigue, cardiac, respiratory and muscle issues.
Gmabuster, I would recommend you try taking vitamin B12 (this is a water soluble vitamin so you will excrete any excess) and see if this helps to improve your breathing issues, as low levels can cause or add problems in this area.
gmabuster, so far no side effects from the cellcept after 4 mos.....THAT I KNOW. supposedly it is helping w/my kidney inflammation as my GFR for kidney got better and although my inflammation #'s are still flagged as "high" the number is lower than before. I still have numerous other problems because of the SS and I have other illnesses. I do have asthma that I've had for 22 years, including now all the severe dry issues and a host of other. So overwhelming and so hard to keep up with everything and know what is causing what since a lot of the symptoms overlap. My doc recently put me on Elavil for my fibro and Salagen for added moisture that the Elavil takes. Haven't taken either yet. I'm on numerous pills as is. Gotta try the natural way....
Sorry you experienced awful side effects. My experience is that most docs don't get it....so frustrating...
Good luck gmabuster said:
Hi Maria, i was on cellcept for 2 months, and suffered terribly from the side effects. I let my dr know, and was told oh no no, thats not from cellcept, you need to see a cardiologist! This coming from the one who answers the phone in the office! I was so upset. I ended up with all kinds of damage from the cellcept. From irregular heartbeat to protein in my urine. But will anyone blame the problems i suffered on the cellcept? Nope. Just to stop taking it, and lets see what we put you on now. I refuse to be a guinea pig anymore. Thank God for my couseling therapy. And finding a new pulmonologist who treats asthma patients who also have sjogrens. He promises to get to the bottom of my breathing problems, and get me the right kind of help. Of course this is just my story. I pray you do better than I did, as I know some people do well on cellcept. Im just not one of them.,
So right….my doc approved my being on Biotin and taking a multi-vitamin that has the B complex as well. It all makes such a difference. Anything that keeps the body running the way it should!!
About 5 years ago I started getting them and they lasted for 2 years-very very painful. It was awful and I was in tears all the time. I had difficulty swallowing and couldn't eat much because my tongue would brush up against my teeth and god forbid if I ate anything that wasn't soft. It was horrible. I would get the little red bumps on the tip of my tongue like when one eats too much salt, but much larger ones on both sides (oblong and puffy) and underneath my tongue and a bunch of big and little ones on the tongue nearest my throat. Also my tongue had slits all other it not to mention sometimes a thick coating on my tongue as well.
Now I know I was in a full blown lupus and SS flare. I was ill with something every week and was at my doctors office repeatedly. They were baffled. I had major joint and muscle pain and spasms constantly, chronic bronchitis, esophagus infection, eye infections, severe ankle infection, major dizziness, ill feeling, throwing up what looked like coffee grounds, stomach pain, blurred vision, then the dry stuff started. the list is endless. My bloodwork was all over the board and my WBC dipped to a 1. All the while, still dealing with the lesions.
My PCP sent me to the cancer center (bone marrow tests), nephrologist (kidney biopsy) and the ENT for the lesions. I had lupus (SLE), Kidney nephritis, sicca, scelerdoma, dry eye, raynauds, but they never mentioned SS. So I went to the Cleveland Clinic as they are one 1 of the top 10 hospitals nationwide. They confirmed all of the above illnesses and also threw in SS and connective tissue disease and a couple more. I switched stomach meds because the one I was on was known to cause the low WBC. Shortly after that my lesions lessened. Since 2012 I still get them but not nearly as severe and not as long. I probably have every connective tissue issue from both lupus and SSJ and most of the all of the symptoms. I can't keep track of them and don't know sometimes which symptom is from what illness. Very high maintenance and so overwhelming to keep up with everything.
I recently started getting them again. It's been a couple weeks. May be having another flare of some sort as I have a lot of crap going on again. Most recent is the leg and body twitches which feel like a bite or pinch. Also major skin issues with these little bumps all over my body. Some itch some are big some small some purple like dots. It just never ends.
Where is the nerve pain? On your tongue?
ask what your tongue lesions are like and how long they last for. I ask this as I had some very nasty tongue like ulcers that lasted for a few months and caused me great nerve pain.
Hi Josh, appreciate you're taking the time to leave a comment anyways. Have a great day.
joshedu said:
Maria,
I don't really know anything about Al suppressants or GFR so I'm not much good to you for the information you're looking for. Sometimes not knowing or understanding what's going on is worse than the answers. I hope someone can help you find them.
That's what I told my new rheumy---that I've been very symptomatic since my WBC has increased-be it SS or lupus,..who knows anymore. It gets so confusing keeping track....it seems all I do is read and while reading I come across something else that rings a bell and I read up on that. OMG really! This is my life. Sleep eat and breath these illnesses.
Anyways I stated last week with incredible itching (more than the norm) and breaking out in small bumps all over body, getting leg and body twitches, feels like pinching or biting. eyes and mouth are drier than usual, dizziness, optical migranes. Not that these are new, just flaring again and back with a vengence.
SO HOW DOES ONE KNOW WHAT IS CAUSING THE FLARES OR HOW TO PREVENT THEM....OR CANT YOU??
purplebutterfly said:
My wbc will go up when I am flaring. Have you seen your GP
You may have an infection some where in your body any sign of fever cough stomach virus?
Our body reacts in such odd ways that some times they can not find out exactly why some thing is going on. Usually my doctor will do blood work every 3 months to see if it has changed any.
I wished i could be of more help hopefully some one will come along in a while that can help more.
I would see the doctor next week and have him/her give a better explanation and check for an infection since we are prone to having infections.
Hi Kaz, wow thanks for all the info. Are you a nurse or in the medical field? No unusual symptoms just more than the norm. Its like a trade off I guess. Flare here of these symptoms, then months later those symptoms die down and then another flare of other symptoms. Right now its extreme dry mouth&eye, skin issues, tongue lesions, leg/body twitches. Doc did a CBC and diff w/platelets, Comp Metabolic panel and a urinalysis R&M. Many high and low flags. He told me not to worry about them...really???
Couldn't explain the increase in my GFR or WBC. All I know is that since my WBC has been increasing, I'm experiencing major flares and the increase started 1 mo after taking cellcept. You would think a doc from Pitts at the Lupus Center would know about leucytosis. No lymphoma issues. I read on that and asked him at my appt. to screen for that.
I wasn't aware of the 3 types of WBC. More research and reading :( I'll ask doc about that. I did have the urinalysis and know my protein and RBC levels in urine are over the top.
Thanks for all your information. You are a wealth of knowledge. I'm sure I'll be picking your brain again. lol
Thanks again!!! Kaz said:
Hi Maria, Are you experiencing any unusual symptoms? Fever, weight loss?
Cellcept has been closely associated with reactivation of viruses in the body, so if you've ever had epstein barr, or any other DNA type of virus there is the possibility of viruses reactivating - so I would be asking to be screened for viruses for a start. I am assuming your specialist did a full blood count?
In trials for cellcept, there were reported cases of leucytosis (increase in white cell count) around 2-4%. So you could be experiencing a rare adverse reaction.
However, cellcept has been linked to increasing one's chance of lymphoma. Given SJ also increases one risk for lymphoma, and now taking a drug that also has a slight risk of increase in this area, I think it would be pertinent to ensure you are screened thoroughly for lymphoma as early signs are increase in lymphocytes.
With white cell blood counts, they are broken into different types: neutrophils, lymphocytes, monocytes, eosinophils and basophils. Ask your doctor which ones where raised.
I would personally be asking to be screened for lymphoma as a precautionary measure.
In regards to your kidney issue, there is a condition called pyelonephritis which was associated with some patients in trials but classed as very rare .3%. It is a urinary tract infection in the upper part of the tract and can affect the kidneys. Fever is generally present. Urine tests would need to be performed. The dipstick leukocyte esterase test (LET) helps screen for pyuria. LET results have a sensitivity of 75-96% and a specificity of 94-98% for detecting more than 10 WBC/hpf. The nitrite production test (NPT) for bacteriuria has 92-100% sensitivity and 35-85% specificity.
I would be seeing your GP and asking for a full work-up to rule these things out. It could be that you are just experiencing rare adverse reactions, or it could be something more than that and the only true way to know is by asking for tests. Ensure you are screened for viruses as well, like epstein barr, zoster herpes etc.
Below is straight from MIMS which is what doctors access for information about drugs. To me it indicates you should be monitored closely. Use in patients with severe chronic renal impairment. Patients with severe chronic renal impairment (GFR < 25 mL/min/1.73 m2) who have received single doses of CellCept showed increased plasma AUCs of MPA and MPAG relative to patients with lesser degrees of renal impairment or normal healthy patients. Patients with severe chronic renal impairment should be carefully monitored and administration of doses of CellCept greater than 1 g bd should be avoided (see Dosage and Administration and Pharmacokinetics).
P.S. Anyone with known skin cancers, or history of skin cancers in their family need to be very careful using this medication. It also makes people with no known skin cancer link more vulnerable, so ensure you are sun smart when outside and have regular skin checks.
unfortunetly from what i understand, us lupus and ss patients never much have the luck of straight on bloodwork numbers … Guess it’s all in what your body is reacting to at the moment of the blood draw ? Not sure myself… But u can try to ask more about it with your doctors… U know i see a hemo doctor too and maybe they could explain the blood thing a little more in depth? Idk… Good luck and keep ur head up as much as possible… We understand!