Some news from German patient meeting

Any entries from our PH friends abroad are very welcome.

Some news from German patient meeting

Innlegg Ralf » 17 Nov 2013 14:59

Hi everybody,

I thought, that I send some informations from our German patient meeting, End of October in Frankfurt.

Prof. Grünig, Heidelberg,

showed some exciting informations about iron deficiency and IPAH.
He told us, that about 44% of IPAH patients have iron deficiency, and about 13% of them even have anemia.
He showed some charts, with survival curves of patients with -or without iron-deficiency, who were otherwise matched.
Patients with iron deficiency had a signifikant worse survival.
This is why he started to give all patients with iron deficiency, who visit his PH-center in Heidelberg, supplemental iron by infusion right while patients waiting for their turn.

He further told us, that iron uptake is often disturbed in patients with severe IPAH.
And that those patients won't take any profit from oral iron supplements.
Those would be recommended in early states, if ferritin (a iron sorage blood parameter) decreases, but before the iron really runs low.
Of couse an oral iron supplement should be tried first, but if it shouldnt work, he suggested Ferrlecit 1000mg iron infusion.

He told us, that patients with iron deficiency had about 70-80m lower distance in 6min walk test.
Ans that iron supplementation in those patients lowers pulse frequency and stamina.

Prof. Grünig mentionend a target of ferritn >= 40mg/dl.

Non the less, Prof. Ghofrani warned that the long term effects of IV iron supplementation wont be known in PAH and had to studies first.
Well, Prof. Grünig agreed with that.

My experience:
I had iron deciency and mild anemia and was unable to get enough iron by nutritien. Despite increasing red meat uptake o.s.v.
Getting iron supplementation with ferrlecit at my local doctors practice, improved my 6min-walk by ...120m !!!
And I had far better stamina.
One such infusion boosts the iron storage up to max, or even a little more.
And it takes about 4-6month, until they are up to running low again.

And I know 2 more patients, who experienced about the same.
One even went to his local doc AND his ph-center, both had no idea what it could be. And the ph-center said: PH-wise all equal to last check.
I suggested to have his iron checked and bingo!
He also improved dramatically.

So I can only suggest to have iron checked.

Another topic in Prof. Grünig's presentation was nutrition:
He pointed out, that anti-oxidants and flavonoids (as antioxidants) could help and he showed a list of foods:
green and black tea, cocoa, chocolate (specially dark or specially processed), grapes, oranges, apples, red win..

He also mentioned L-arginine

And the importance of supplemental O2 - if needed.
Recently there had been lots of studies that showed how bad oxidative stress by radical oxigene species is for PAH.
And that this oxidative stress is incresed by O2-deficiency.
By supplementing O2 it can be resolved.
The problem is, that meanwhile mechanism of action are well understood, that that O2-deficiency promotes acitivation of some key triggers of detoriation.
This has to be avoided.

O2 should be considered at pO2 <60mmHg or O2sat <90%.

Another point was dedicated PH-rehab.
It has been set to a Grade 1 recommendation on the big Nice PH-Conference in March, 2013 and will be added to the guide lines.
Prof. Grünig offers a dedicated rehab for PH-patients in Heidelberg, Königstuhl.
A second facility that works together with MH Hannover is located in Falling-Borstel, close to Hannover. Where Prof. Höper from Hannover is scientifically involved.
Hall told me, that you also have a rehab offer near Oslo.
I can really recommend to use this opportunity.

Diagnose 3/1996, Primær PAH
Brukerens avatar
Innlegg: 84
Registrert: 07 Mar 2008 22:46

Gå til English speakers

Hvem er i forumet

Brukere som leser i dette forumet: Ingen registrerte brukere og 1 gjest