Good news from doc apt.

[kristina]

"But yes don't ever give up hope.  I would be one big blob of depression if I did. Maybe they can keep you where you are at for a long time. What course of treatment are you going through right now? And how long have you been doing it?"

Dear Manda thanks for your kind thoughts. I have been in a flare-up of MCTD/SLE for many years and through these years my Creatinine has gone up steadily (436) and my GFR has gone worse. I did have one course of Retuximab- and Metholprednisolone-Infusions which the Neph thought would stop my inflammation. This course of medication (infusions) did not stop my kidney decline and did not stop the flare-up dead in its trucks.
I wasn’t offered any more treatment and I still have flare-up symptoms and try very hard to find a specialist who might be able to bring the flare-up under control as I think this would stop my kidney deterioration. I find it impossible to find a doctor who can deal with the combination of my medical history and the complicated rare type of MCTD/SLE I suffer from and I was disappointed when the Mayo-Clinic declined to help me. This was quite a shock because I thought if there was some hope it might be with the Mayo-Clinic. I approached them even though I haven’t got any money but my hope was that they would take me on as they sometimes do with very rare cases using some philanthropic means. Thanks for your interest and good luck!! I do hope that you remain in remission for a very long time!!! Kind regards.

[wiltwom]

It's always great to hear some good news! Enjoy it...

[MandaMe1986]

Well I feel for you. For the longest time no one wanted to treat me because of the number of problems I have.  But I was really lucky a couple years ago to get a really good neph who was willing to treat my kidney stuff, and a romatology doc who was willing to over see my lupus. My Lupus is rare too cause it doesn't show up in lab work.  So it took them a really long time to even decide what it was I had that was killing off everything. So I do understand what you are going through.

Like I said just don't give up hope. If nothing else a little bit of faith makes going through all of this easier.  I do wish you the best of luck Kristina. 

[kristina]

Dear Manda, it seems we are in the same boat with regard to the diseases.
It will be very interesting to see how your kidney-function goes!
As you are in remission I wonder if the Creatinine-GFR-Urea will either remain static, slow down or even get better!
I keep my fingers crossed!
The trend of my Creatinine and GFR shows it to be getting worse,
the Urea-level seems to get up and down a bit, between 16 and 20, 
so I don’t know where this is going.
I haven’t got any disturbing symptoms yet like water-retention, sickness, itching,
sleep disturbance or going off my food, perhaps this comes later as the Urea creeps up.
How did you find your Neph and rheumatologist? Did you research? And if, how?
I have contacted many, many support groups for rare diseases and whilst they are very sympathetic,
they have no power or teeth to help/assist me find the type of neph and rheumatologist I need
who are familiar with MCTD/SLE/end-stage-renal failure.
Do you go to a special teaching hospital?
Twice I was sent abroad for diagnoses of MCTD/SLE
because it seems so complicated (1995-SLE-Lupus, 2003-MCTD etc.).
Like you nothing ever showed in the blood tests, so I had great difficulty.
Unfortunately, this option of being sent abroad does not exist any longer.
I feel strongly that I have a flare-up of MCTD/SLE destroying my kidneys and I
think that if it can be brought under control my kidney deterioration might be halted
or even get better again.
I agree with you, the people here at IHD are great and they support us
who are trying to stop the slide towards a dialysis.
I find this quite noble of them to be so honest!
If you can suggest anything further it would be very much appreciated.
All the best and keep flare-free!

[MandaMe1986]

It dose sound like we are in the same boat. The fact that you still haven't gotten any symptoms is a good thing. I think water retention is the worst the itching isn't that much better though.  You known I did end up switching hospitals. I wanted to go to a teaching hospital.  And I made an apt with the head of Rheumatolgy.  That was the first right move I made.  I figured the head had to be the best the hospital had to offer.  As for my Neph that was just luck.  He turned out to be a grate doctor.  But if you can I would research the theaching hospital near you, and find out who is the head of each department.  Then get a primary to give you referrals.  Once that is done call and make an apt with those docs. Tell them you don't want to see that doctor. Don't let them tell you they can't do it because of it being a teaching hospital. You can make an apt with them. If they give you to much trouble contact the hospitals patient advocate and let them know your situation.  They should be able tot get you an apt.  Best of luck to you sweetie. Keep me updated on how everything turns out.