Anti Factor H Antibodies

[Michele Haymes]

Hi Everyone,  I'm a new member in the group - my 5 year old son Jeremy was diagnosed with aHUS in September last year.  In January we were told that his condition had been narrowed down to Anti FH ab. 

Jeremy is now down to fortnightly Plasma Exchange coupled with immunosuppressants.  I'm keen to hear from anyone who also has this specific condition and learn about how they are being treated, any recurrent events etc. 

[Cheryl Biermann]

Hi, Welcome here. So glad to hear Jeremy is doing better.  Hugs for you too, it's not an easy disease to wrap your brain around!  Although I am not sure, I think this is something that can also be treated with the new treatment, Soliris.  1-888-soliris is the number for Alexion, makers of Soliris.  Although I knew this was one of the causes of aHUS, I just can't recall anything specific.  I'll check into it, in the mean time, you'll get faster answers by calling the number above.  Plasma Exchange has it's own drawbacks.

 

[Cheryl Biermann]

I googled the question and according to web sites, Soliris is effective in Factor H antibodies.

 

[Michele Haymes]

Thanks Cheryl. As you may know, Soliris is not approved in Australia and I understand that the cost to the hospitals for it's use is approx 200k. My Nephrologist is wanting to try Immunosuppressants but has now acknowledged that Soliris is a possible treatment pathway. Just not sure the hospital will pay for it. Jeremy has responded very positively to the Plasma Exchange therapy (36 sessions since September 3, 2011). While he lost the first CVC after 2.5 months due to clotting, the second CVC has been good - no infections etc and the PE alone brought Jeremy very close to normal ranges. Since commencing the Azathioprine and Prednisolone all his level are in the normal ranges. We were suppose to have PE today but it was cancelled due to his excellent blood work. I've got my fingers crossed for next weeks blood results as there will be three week between PE sessions. Will be good if the meds can maintain his levels without PE. We are very much looking forward to the day we can remove the CVC.

[Cheryl Biermann]

That's right, I remember Australia hasn't yet approved it.  We have a member on this site, Kerri Gray who is in Melbourne.  Maybe you would like to speak with her?  You can friend request her here and have private discussions.  Good luck, I hope he stays well!

[Svetlana Finley]

HI Michele

We just found out that Anna has the antibodies to factor H, my doctor wants us go with immunosuppressants before go with Soliris. Anna has episodes on and off, they were just beet treated with plasma exchange and her last episode was in 2010. right now she been off, but still has some blood and proteines in her urine. Does any one else replyed with what treatments they have for antibodies?

[Cheryl Biermann]

See above, I googled this question and it brought me To Alexion.  It is useful for anti-bodies.  I suspect the reason for wanting to try steroids first is the cost.  Please pursue the doctors and encourage them to contact U of I and Alexion. 

[Michele Haymes]

Hi Svetlana,

Sorry to hear your Anna has aHUS, but good news that they have now identified the exact sub-type. Nobody else responded with other treatment types aside from Soliris. After learning that my son had the FH Antibodies in January, we commenced Azathioprine and Prednisolone. Since moving to these medications, all his blood work markers have been normal and he had on one plasma exchange session (one week after meds started) post commencement of medications.

He continues to be stable and his doctors have also said his perma-cath can come out which we are VERY excited about. We have also begun tapering down the steroids to see how his body reacts. This week we sent more blood off to Paris for testing his antibody level so we have our fingers crossed for Jeremy that there are none or at least very little.

This is Jeremy's first episode so things will be tentative for a while, but I can say that the immunosuppressants have made a big impact for us in terms of getting his condition under control.

Good luck with Anna and your new medications.

Cheers,
Michele






Svetlana Finley said:

HI Michele

We just found out that Anna has the antibodies to factor H, my doctor wants us go with immunosuppressants before go with Soliris. Anna has episodes on and off, they were just beet treated with plasma exchange and her last episode was in 2010. right now she been off, but still has some blood and proteines in her urine. Does any one else replyed with what treatments they have for antibodies?

[Svetlana Finley]

Thanks for reply Michele, how offten he recived those medications?

[Michele Haymes]

Hi again,

Jeremy has both medications daily as oral liquids. Not sure how long he will be on these medications. I'm not happy with the Pred, as it has many side effects and Jeremy seems to have many of them. The problem we have is that it appears to be working so it is a difficult situation to be in. The doctors will start to reduce the dosage to see what level Jeremy needs to keep him stable.

I've read some clinical papers on FH antibodies by French cohorts published in 2010 and while the sample sizes are small, the most affective treatment appears to be Plasma Exchange plus Immunosuppressants.

Cheers,

[Svetlana Finley]

Anna used to take Pred, wile she was on Plasma exchange back in 2010 she didn't like it. We got her off as soon as she be eble too and yesterday I talked to her, she poor tears over and over. Looks lie it will be very tough to make start again, she does gymnastics and wants to stay there. With Pred. she gained so much weight and worked hard to ger back to gymnastics, oso I am guessing tomorrow if our dr bring that up again it will be major catastrophy. I will let u know what I will find out from Alexion today.
Also I looked up on Azathioprine do your doctors worry about side effect of that medication?

[Cheryl Biermann]

Svetlana,

 

Under dialysis, there is a very strict diet, even someone with no appetite like Natan had a hard time, but the nutritionist at the hospital is a great resource.  Maybe Anna should see your nutritionist if she goes back on Predisone, it may be she can eat more of less calloric meals, 6 little meals as opposed to 3 wih snacks or something that w ill help her keep her weight at gymnast weights?  I know Predisone was great for us because it stimulates appetite, but it makes it hard for those who already eat healthy.  Anna is old enough to have a say in how she approaches her treatment, she doesn't really have an option in what she takes but how she handles it.  I say make her a part of the solution and she will cooperate more...lots of these kids spit out their meds, we don't want that!  Let us know.  We're all praying you find a good solution.

 

[Michele Haymes]

Hi Everyone! I wanted to give an update on Jeremy. Last week we finally got the perma cath removed from his chest!!! It was almost 8 months to the day that it was put in. We are all so very exited for him and he is very much looking forward to going swimming, kicking a football and having playful wrestles with his friends. Things we took for granted before he was diagnosed with aHUS.

The decision to take it out was made a little easier as it became clotted in both lumens, but it hadn't been used for Plasma Exchange since the beginning of February. It is a real relief. The immunosuppressants are working well at maintaining excellent blood results. Since ceasing plasma exchange and commencing the meds, his blood work has been really good.

In April we sent a second batch of blood to a testing a lab in France. The results showed that his antibodies are higher than the December results, which was disappointing, but he looks and feels well, plus is routine blood work is good so we are trying not to focus on the France data at the moment.

Look forward to reading all your stories too.

Cheers,
Michele