Update on pberggren

[Sangye]

It might not be a flare, Phil. Maybe the rtx just isn't fully working yet? I hope whatever it is can be treated easily.

[Rose]

Those of you who have a GFR between 30 and 60 (Stage 3 Renal disease) which immunosuppressant do you take. I am on Cellcept 750mgs twice daily and I am fighting with insurance to pay for this. Am I right in saying that methotrexate should not be used when GFR is below 60?

[mishb]

Phil, fingers crossed that it is some crazy, weird symptom that means everything is on the improve.

No seriously, I hope it is not a flare and maybe just something from those stupid injections they made you have.....and it doesn't last very long.

I will keep you in my healing prayers.

As always

[RudiK]

Phil, I hope and pray that is not a flare up and that it will go away. Maybe just a reaction to injections.

[RudiK]

Rose, my eGFR is at 38 and I'm taking Sulfameth/Trimethoprim 800/160 three times a week.

[Trudy]

Those of you who have a GFR between 30 and 60 (Stage 3 Renal disease) which immunosuppressant do you take. I am on Cellcept 750mgs twice daily and I am fighting with insurance to pay for this. Am I right in saying that methotrexate should not be used when GFR is below 60?

Rose - The magic number listed for not taking Methotrexate is 50, I remember you are close to that. My eGFR is 46, so I can't take it and I am allergic to aspartame that is in Cellcept. Right now I take only 20mg Prednisone. My doctor wants to start immunosuppressant soon, but I have no idea what...maybe Rituxan. Why does your insurance not want to cover Cellcept?

Phil - have you gotten your ANCA results yet? Hope you feel better!

[Rose Cozzette]

just hang in there and will yourself better! these flares are the pits but look forward to improvement.doc said I could lower the cellcept to 500 daily but be very aware of symptoms. sigh... he cautioned me abt maybe having to stay on a small dose of preds, I sure hope I can get off.

[Rose]

My previous insurance paid after a few months of fighting with them. Then in October 2010 they went bankrupt which was also the month that my rheumatologist decided to move back to her native country. I was without a doctor or insurance. I soon found another rheumatologist who appears to be OK and I was taken on by another insurance company and had immediate cover as I have had insurance for over 30 years. I had to then re-apply for PMB benefits for chronic condition. They refused saying that Wegener's is not a PMB condition and so I was not eligible. I kept wondering why one insurance covered me but the other did not, I wrote a letter of complaint to government body which acts as a watchdog over the medical insurance schemes. i submitted to them my kidney biopsy results showing Pauci-immune segmental glomerulonephritis as well as blood test etc showing stage 3 kidney disease. They sided with the medical insurance company and stated that Wegener's is not a PMB condition even although my doctor pointed out that without cellcept I would go into end stage renal failure in his motivation.
In June, whilst reading an article on which conditions are PMB I discovered that Chronic Kidney Disease is a PMB regardless of the cause. I then wrote to council pointing this out to them and appealing their decision. I am still waiting for an appeal date but I have been told that I am right and that kidney disease is a PMB condition but was told that my case is complex. Just yesterday I phoned the medical insurance company as they did not respond to a motivation sent in August. I pointed out to them also that my kidney disease is a PMB condition. They finally agreed but told me that cellcept was 'off label' I explained that I could not take imuran or methotrexate. They said they would investigate further and come back to me ...waiting!!
Sorry that this is so long-winded but I feel so frustrated and depressed about the whole thing. I am so sick of fighting with them and my medical costs are just eating up all our retirement savings. I have enough worries without money worries going into retirement!
On a positive note my last GFR in August was 61 a big improvement from 41 in February. I am doing so well on cellcept

[drz]

Those of you who have a GFR between 30 and 60 (Stage 3 Renal disease) which immunosuppressant do you take. I am on Cellcept 750mgs twice daily and I am fighting with insurance to pay for this. Am I right in saying that methotrexate should not be used when GFR is below 60?

Started on RTX, went to CTX, then Azathioprine (now 175 mg). My doctors didn't like using MTX for me due to my kidney damage and my GFR now runs between 40-60 with ave around 50. Still waiting for last numbers from yesterday. I think azathioprine (Imuran) also tends to be a little more effective according to the research for people who can tolerate it. If you have liver issues its not good for you.

[Rose]

Rudik....Had to google sulphameth and was surprised to see that it is an antibiotic. Does this control your kidney function? I may have to take myself off to see a nephrologist to see what other options are open to me should my insurance not pay for cellcept I have had drug induced hepatitis twice since diagnosis and a severe reaction to Imuran. My GFR is usually between 40 and 50....this is the first time in over 3 years that it has been at 61